I started my first period at age 10. Being only in year 4 it was extremely petrifying and what made it worse was that it was paired with a whole lot of pain. My mother told me that it was all part of being a woman.
2004 – 2008 were four years of heavy periods, days spent in bed, numerous days of school missed and pain that I couldn’t even begin to explain. Early in 2008 while at home with my sister I was struck down with what could only be described as the worst pain I had ever felt. My insides felt like they were constricted, my back as if it was being stepped on and crushed. I fell to the floor in the fetal position and cried. My parents rushed me to the hospital where I was pumped with morphine and waited 6 hours to see a physician.
When one finally saw me I was still doped up on pain killers, was overlooked and told to go home. Three days later an almost mirror attack happened and I ended up back in emergency. Three hours into my emergency visit and after numerous blood tests, ultra sounds and poking of my abdomen I was placed in a room with a psychiatrist who asked me if the pain I was experiencing was mental and not physical because there was nothing physically wrong with me. “are you possibly doing it to gain attention from your parents?” As a 13 year old this was the most distressing thing. Having this pain I couldn’t describe, that was being brushed off as attention seeking behaviour.
Eight hours into this second emergency visit they came to the conclusion it was my appendix and sent me in for my first laparoscopy to find evidence of that diagnosis and remove it. Waking up post-procedure my mother explained to me that they had found a large amount of blood in my abdomen that was due to a cyst on my ovaries bursting. I was placed on the pill and to everyone else my problem was solved. My pain and heavy periods still continued even though I was on the pill, I still had my off days or even weeks and continued to miss school but I lived with it.
2010 came around and I again had another attack that mirrored the first two, I tried so hard to over-come it, to not complain because of course it was just my PCOS. Almost twenty four hours and a whole lot of pain killers later I was still paralysed from my pain, nauseous and close to passing out. My parents took my back for my third emergency visit. After almost twelve hours of sitting in a waiting room hunched over in pain (because they were busy and I was not seen as a priority patient) I was taken in, doped up on morphine and asked once again “sweetheart are there any issues at home that may be causing this pain?” I was kept in over night and told to go home and see a gynaecologist. My mother took me to the nearest one. He was an older man who still to this day I despise. When he asked me about my pain on the worst days, I rated it at a 9-10; his response “I highly doubt it’s that bad, it’s just your period and I think it’s most likely a lot less than that.” My mother and I asked him to perform a laparoscopy to test for endometriosis because my aunty had been diagnosed with it a while back. His response was not comforting and very offensive. He made out that I was just another 16 year old who had normal period pain. Reluctantly he performed the laparoscopy and when it came up with nothing but healthy looking ovaries he told me I was fine and just had to build up a better pain tolerance. Needless to say I never saw him again.
Two more years passed. I continued to curl up in pain every month and cry myself to sleep feeling that this would be my life. When I became sexually active with my current long term partner it was a beyond painful experience to the point where neither of us wanted to continue because it was causing me so much discomfort.
The end of 2013 came around. I was finishing my first year of university and was learning to live with my pain. One night while driving home from dance rehearsals my abdomen began to cramp in a way I can only describe as my ovaries being pulled and twisted; my back felt like someone was constantly digging their knee into it and my entire body went into shock. I’m still unsure how I drove home that night. My dad carried me to the third level of our house into my sister’s room because I was unable to make it up one more flight of stairs to mine. I was always very secretive about my pain trying my best to not complain, but this was unbearable. I screamed and cried to the point where my parents were afraid and called an ambulance.
I lay in a hospital bed now onto my fourth emergency visit. The doctors told me it had to be my appendix this time and scheduled me urgently to have it removed. Within 2 hours I was counting back from 10 and asleep in an operating room. When I awoke the sweetest nurse I have ever had the pleasure of meeting was beside me. I am so thankful she was there; she reassured me that my mother was on her way and when I asked if it was my appendix she looked so very concerned. Holding my hand and bending down to my level she explained that even though my appendix was removed it was not the reason I was in pain. The surgeon had found endometriosis covering my uterus and my left ovary; he did his best at burning off what he could. I remember being still extremely groggy from the anesthetic, the news causing me to burst out crying. The tears were mixed. A part of me was so sad that endometriosis had now been confirmed and it was something I now was going to live with for the rest of my life and the other part of me was happy. Happy that I finally had a reason behind all this horrible pain I had endured and I could finally find a way to control it.
Nine years after my first period, four emergency room visits, three laparoscopies and one horrible gynaecologist later I had my diagnosis. I currently have an extremely great Gyno – Dr Kim Mathews – supporting me who has aided me in several different pain controlling methods. (She was the one that introduced me to this page). I’m learning to live with the pain which has calmed down since the last surgery and the insertion of the mirena implant.
For the most part I’m doing very well, the pain is still there and I continue to have days where it’s hard to handle. Even though we are only 21 my boyfriend and hope that when the time comes for children we will be okay, knowing that the medical world is forever changing. I now know how hard it is to diagnose endometriosis and I’m grateful that mine has been found. It’s something that still to this day is overlooked in the medical community and it saddens me that so many women are living with this everyday and have no idea what’s wrong with them.
James & Hitesha
“Culture and Pain: Growing up I’m quite sure my mother taught me about periods and the pain associated with it. I don’t really remember it. When it comes to women’s health, all I remember from my childhood was the first time a girl in my year six class explained to the whole class about her shocking first period.
I remember most of the boys, myself included, thinking it was some kind of practical joke. In time, I learnt to accept that periods were real. But, I never acknowledged the pains that women go through when it came to periods. I grew up seeing my mother carry around a hot water bottle and complaining about cramps every month while my father would say it was normal.
My father is not a bad man. He has always been a hard worker, good provider, loving husband and father. He taught me right from wrong, honour, respect and kindness. There just wasn’t a talk about the birds and the bees nor was there one about women’s health issues. Does culture play a part in the way we all view pain?
I would define culture as the influencing factors of who we are: the environment we grow up in, our education and our experiences. Mum, embarrassingly enough, did try to tell me about the birds and the bees but I probably did what I learnt best from dad and that was in one ear and out the other. Young boys do often try to be like their fathers and from my experience, picking up the bad habits first.
The way I used to look at pain associated with women’s health was a cultural thing, even if it was indirect. I chose to ignore it or mentally laugh it off as if to say “come on, you’ll be right, you just don’t want to (fill in the blank)”. Call me whatever you want but my thinking came from the fact that my mother worked hard through her pain.
So, I grew up thinking pain associated with periods was normal. When my wife decided to go public about her Endo, my mum told us that she had suffered from Endo as well and that she had miscarried once after me. My current environment of tending to my wife during her endo flare-ups, my education in learning about dealing with endo as well as the experiences (maybe I’ll GoPro it one day) is more than enough to make me understand that ignorance is certainly not bliss.
Culture has definitely played a part in how I view pain. How has your culture played a part on how you view pain?
My wife, Hitesha, an Indian who came to Australia 10 years ago explained to me that women’s health problems were never discussed at the dinner table. During menstruation, women are not even allowed to enter the temples. Women who have miscarried are not invited to see a pregnant woman in fear of casting an evil eye. Women who have health problems very often keep their issues to themselves in fear of looking weak or worthless to other family members. The mention of any health issues to a woman’s in-laws can even cause bad rumours or even threats from the husband’s family. I didn’t believe it until after going public we experienced it ourselves.
We went public about my wife’s problems to stop this exact thing. This stigma that surrounds women as the weaker vessel… Pain is something that can be treated or at least worked through. It takes a whole load of patience, love and care. Isn’t that what being human is about?”
For more info: https://theconversation.com/how-different-cultures-experience-and-talk-about-pain-49046
I’m 25 and have stage Four Endometriosis. At 14 years old I was the only one among my friends whom hadn’t started her period. I felt left out & like I was never going to become a woman; if only I could go back to my 14 year old self and let her know to enjoy the time without it because her life is about to become a massive rollercoaster ride! Doctors didn’t find anything wrong they said it would be at least 6 more months before my reproductive system would be mature enough.
A few weeks later I started experiencing the most horrid stomach pains and wasn’t able to stop throwing up. Thinking it was just a stomach bug I ran to the toilet and screamed in horror! Where had this blood come from? Am I dying? What is going on? My mum came rushing in not expecting the hallway floor and toilet floor to be covered in a trail of blood after a few minutes we realised this was my first menses & it was truly a horror scene.
For 12 days I was in agony, I couldn’t keep anything down, nothing was helping my pain or nausea, doctors and hospitals weren’t able to help other than tell me I was exaggerating or making it up. Over the next 18 months each period got worse and worse. I was missing so much school & it was affecting my complete immune system I would catch anything even if I didn’t get close to anyone sick.
The whole time my mum stuck by my side, she went to emergency with me every month and when I wasn’t sick she would be taking to me to any doctor we could get into. Unfortunately not 1 doctor believed what I was going through. My mum would sit there crying, begging them to do something to help me because she couldn’t watch me be so sick anymore. The only reasons they could give us was: I was young and will grow out of it, or: it’s all in my head, or: I’m exaggerating! My teachers started getting involved and worried especially after me fainting 7 times in 1 day from the intense pains. Even with their concern and involvement the best answer we got was I was severely anaemic! I accepted the fact that nothing was wrong and tried to live my life as best I could when I was well.
In October 2007 I met Morgan, now my husband. At first I kept my illness hidden from him, I refused to eat around him because eating caused my nausea and pain to become worse and I didn’t want him to see me like that. After moving in with him early Feb 2008 I wasn’t able to keep my illness hidden any longer. He didn’t understand what was wrong and would tell me there’s nothing wrong with me! How could he believe me if the doctors didn’t? Unfortunately this same month my mum was diagnosed with kidney cancer so my illness really didn’t matter anymore I just wanted my mum to get better.
I attempted all versions of the contraceptive pill hoping this would give me the relief I was needing to help get my mum better. After having her Kidney removed she was then diagnosed with lung cancer; she became so unwell she could no longer attend any of my appointments so I had to go by myself. The doctors where nasty when I was alone so I decided to stop all visits to any doctors until my mum would be able to take me again. from stopping my visits I ran out of the pill and noticed that being off the pill my pain was easier to deal with.
On 2nd of September 2008 at 09.40 in the morning my mother took her last struggled breath with me standing by her side. At just 17 I’d lost my rock, my believer, my supporter. I fell into a deep dark depression; I became angry and distant and didn’t want to continue with life. The only thing holding me together was Morgan.
Honestly the next few years became a blur, each emergency visit a new doctor would comment on what they thought was wrong and give me something different to trial, there were times I was like a walking zombie and others were my hormones where so out of control & cause more harm than good.
We were told having a child could help or at the least give me 9 months of relief, believing the doctors we decided to try having a baby. Not getting any better or getting pregnant we started visiting dozens and dozens of doctors again – from public to private any one that would see me we visited, none gave any real answers and didn’t give much time or effort into helping me. I started believing that it truly was in my head when one day my now Sister In Law experienced firsthand a major flare up – seeing me screaming in agony sitting on the toilet clutching my stomach with a bucket in my hand throwing up and even fainting; she was horrified and stated that it looked like I was in labour! Having kids already she was someone that would know what labour looks like and whether what I was going through is something normal for women. Hearing this gave me the strength to give a few more doctors a chance at helping!
Having actively trying for a baby for over 2 years a doctor finally agreed to send me for a laparoscopy because at my age it shouldn’t be taking this long to fall pregnant. He still didn’t care about my symptoms but I was willing to do anything to have some relief!! I sat on the waiting list for ages before I finally got my surgery date! 4th April 2012 finally came around, I had morning surgery and was let home the same day. They said they found mild endometriosis but had burnt anything they could see so I would have at least 2-4 years relief & would be my most fertile over the next 6 months.
It took around 6 weeks to heal properly because of infections and my cuts re opening. At my post op appointment I was told about endometriosis and given a ½ page of information on it. The first 3 months following surgery my periods seemed to be worse than they were prior to surgery but I put it down to healing and continued on with daily life. In 2013 I started working on my depression to see if that would help because doctors assured me I shouldn’t be experiencing any symptoms still. In December 2013 I started my weightloss journey in preparation for my wedding coming up in October 2014. Between planning my DIY wedding, home schooling my 16 year old brother & going to work I really didn’t have the time to be so unwell but my body was getting worse and worse as the weeks went on.
Morgan and I decided it was time to start researching ourselves – we learnt a little about endometriosis and Morgan became the supportive helpful person I needed to fight for me when I couldn’t fight for myself. After getting married 29th October 2014 we had a 2 week honeymoon in Bali. Half the honeymoon my husband spent caring for me. When we got home we started visiting doctors again. The new reasoning for my illness’s was now my weight after losing 30kgs that year. We knew that was ridiculous! In the end it was my weightloss doctor who sent me a referral to the hospital to be checked out again. Before attending my appointment a few people spoke to us and stressed that Morgan should go with me and he should describe how much I go through and how it was affecting him especially just being married. Surprisingly enough the appointment went well by following that advice; the doctor listened to him and agreed I definitely needed surgery to see if the endo was back.
22 July 2015 I went in for my 2nd laparoscopy, scheduled for a morning surgery. I was getting more and more nervous as the time ticked by…. 3pm hit and I was finally called in, I woke up in recovery and was transferred to a ward for the night, my surgeon came past and advised me there was a lot of endometriosis and it was extremely deep so she had to excise it rather than burn it out like normal. The next morning the surgeon came past again to discuss what was done along with excising the massive amount of endo she found she also had to release one of my ovaries which had become stuck.
I was now a stage 4 endometriosis battler and spent 3-4 days a week for the next 8-10 weeks in hospital. The days I wasn’t in hospital and managed to go to work were still no way to live a life! I was drugged up on so many pain meds! I could barely move and was struggling to function with the simplest of tasks. Whilst falling back into depression I decided enough was enough and intensely researched!
Every minute of every day that I was bed/hospital ridden I was watching every video, reading every article, joining every face book group I could find. After 3 months I’d learnt that everything I had known about endometriosis was either untrue or just the start of it! My next doctor’s appointment it was obvious they didn’t know anything about endometriosis! From my own research I had found a few things I wanted to trial to see if it would help, so November 2015 I started my endometriosis diet (Low Fodmap, lactose, gluten, dairy, soy, egg free. Meats – organic, hormone free & antibiotic free) within a few weeks I was working more than being in hospital.
I noticed if I attempted to eat anything not on my endo diet I would end up having a massive flare up that would take at least a week to recover from. December 2015 I received my MRI results (scan was 13 October) in the 3 months from op to scan they could already see that my endo was back. It was like a massive kick in the gut! I refused to have another surgery and instead decided I wanted to trial the new endometriosis pill Visanne along with my diet to see if this would help. Up to today besides the few side effects from the Visanne the combination has helped me get at least 50 % of my life back! I still have my flare ups and horrible days even the daily pain but most days I can handle not having a cocktail of meds! The Visanne has stopped my periods for now so we were hoping it would slow the regrowth.
However 29th February 2016 I had another scan which showed I have already got a 4cm chocolate cyst on my left ovary and that my right ovary is yet again stuck and also has a 4-5cm chocolate cyst. Whilst endometriosis seems to be winning atm I’m not giving up! I am an endo warrior and I will continue fighting this with my amazing support system around me! For now my endo diet & Visanne combo is working to improve my quality of life so I am opting to continue this path instead of more surgery anytime soon, after all this is my body and my life I’m taking control of it before I lose myself completely!
As for pregnancy, I never did fall pregnant which I’m thankful for because having a child just to relieve your symptoms is not a reason to have a baby! We accepted that we will never have biological kids and hope that one day I will be well enough so we get the chance to help innocent kids in the foster system. For now we are taking it day by day trying to find a permanent way to get my life back. Throughout my journey so far I have lost so many friends and family and dealt with so many judgemental people that I knew it was time to share my story so far because without awareness people will never understand what we go through and without that we will never get a cure! We may not be terminal but is being alive but incapable of living really living at all?
If you are struggling to get your family/partner to understand what you’re going through or are someone wanting to understand better I highly recommend looking up the blister explanation ( you will find this in the Endo Info section of this website) it’s the best description so that an everyday person including men can understand.
For all the women out there with endometriosis or even may have Endo I want you to know you are not alone! Find a support group! Start researching & please visit an endometriosis specialist!!! A specialist is someone who deals with the disease day in and day out not someone who sometimes deals with it! And most importantly:
Painful menses isn’t normal! A hysterectomy will not cure you!! Having a baby is not a cure!!! The only accurate way of diagnosis is through surgery!!!! There is no cure!!!!!
Charlotte PS the photo is of me and my mum before she got sick.
I was diagnosed with endometriosis at age 20 after suffering unbearable pain since I was 13. Doctors told me it was normal and always pushed painkillers on me that never did the job. During a trip to emergency a week before my 20th birthday three doctors told me I had pelvic inflammatory disease and that I would never had children. Needless to say I was distraught. I rang my mother and told her what happened and tried to accept I would never have kids.
After seeing another GP at a different centre I finally got the date for an explorative surgery. The surgeon told me afterwards that I had sparsely spread endo throughout my abdomen. 6 months later I had the op to remove the endo and had a mirena inserted. 6 months after that, still with constant pain, the mirena was removed. It had moved and started to grow into me.
At age 21 I found out I was pregnant after being told I’d never have children. I was over the moon. I was advised that being pregnant would help with the pain but instead I still had constant agony.
I’m now 25 and mother to a handsome little boy. I’ve miscarried this year and I’m still in constant pain. I have to force myself to get up most mornings to look after my son.
I have a follow-up appointment at the hospital in two weeks and am now considering giving up on the idea of having more kids and opting for a hysterectomy. I’m feeling helpless and lost and any opinions and advice would be greatly appreciated.
Thank you for taking the time to read.
I wanted to share my endo story. I don’t have any friends with it or anyone who understands. I got my period at 11, and bled 7 days straight. I was diagnosed with “precocious puberty”. I had injections once a month every month to slow down my puberty. But it didn’t help the bleeding or pain which lasted well into my teens.
I was in year 10 and I was 15. I remember clearly being in class and falling onto the floor in agony. I was so embarrassed and in the most horrific pain. The school called my mother and I went home. She was quite frustrated with me and we just put it down to bad periods.
At 18 they gave me an implanon in my arm and I bled for 6 months straight! Many of my clothes from that time I had to throw out they were stained so often. My favourite pair of grey jeans were simply ruined. I was so sick but it wasn’t until I was 19 and visiting
Perth that I had my first lap. They found endometriosis! Finally an answer! But nothing changed. The pain and heavy bleeding for days didn’t stop. At 22, the pain was unbearable. My periods were 8 days straight. Such heavy bleeding that I’d go through packets of tampons and pads. I’d leak every night. Luckily I was still able to work and the company was very understanding with my need to take sick leave.
In the end I had to move back home with my parents in Brisbane. My GP referred me to another gyno and I had another 2 laps only 12 months apart.
In the second one they found Endo covering my bladder, ovaries and my appendix was covered completely. Also I had appendicitis but hadn’t even felt the symptoms because my Endo was so bad. My sugeon did all he could. He removed my appendix and he told me “Jess, your endometriosis is bad. You might not be able to have children. So don’t wait!!” When we left his office my Mum apologized as she hadn’t realized all those years how bad it had been for me.
I became very depressed then because I didn’t even have a partner and I was supposed to have a baby asap. However I did meet someone and as I wasn’t on the pill I got pregnant. The relationship eventually broke down. My family was very supportive and Mum and my auntie were there at the birth of my beautiful daughter a few months later. But 12 months after that my endo was back!! Again I was in so much pain and those dreaded periods! There was nothing that helped.
I had a new partner by now and we decided to try for another baby. I was lucky – I fell pregnant. At my 3 month scan they noted a cyst on my right ovary. By 32 weeks, I couldn’t walk, I couldn’t sit down, the pain was so bad, I fell to the floor crying and couldn’t get up! I was rushed to hospital, they did an ultra sound to find a 7cm cyst twisting my ovary and cutting off blood supply. It’s called taunting.
I was prepared for surgery and given four rounds of steroids in case my baby was born while I was in surgery. I was taken into theatre so scared for my baby and for the operation and what they would find! When I woke up I was in labour! I had 22 stitches down my stomach and I was contracting. The pain was worse than anything I’ve ever experienced in my life! I yelled at the nurse: I’m contracting! They raced me into the birthing suite and all I can remember as I was so groggy from just coming out of surgery was wanting my mum and my fiancé!
There were 5 doctors and nurses trying to stop the labour, monitor the baby and make sure I was ok. They gave me medication through my drip to stop the contractions and calm the baby and me. I was kept in the birthing suite overnight with a midwife on watch 24hrs with me in the room. I couldn’t believe what just happened!
The doctors finally got to tell me what they found. They had to cut down my stomach as they couldn’t get the cyst. I had a laparotomy at 32 weeks pregnant. They found a 7cm cyst, an endometrioma. I was lucky to go on to have a healthy baby girl eight weeks later at full term.
2015: 27 years old and the pain is still no better. My periods are the same, 8 days long, huge clots. I’m anaemic because I bleed so much and I take daily iron tablets. I get low blood pressure and dizzy when I have a period.
I fell pregnant again in November 2015. I was shocked and knew something wasn’t right. I had several scans and the baby wasn’t growing and I had a 3cm cyst. By 8 weeks the baby had no heart beat. It was still the size of a five week foetus. So I prepared for a D&C. The cyst was now 3.6 cm. I had the D&C and went home to rest. By Monday I was in horrible pain, I was sweating and felt really sick. I tried to ignore it as it was Christmas week, my children and family needed me.
The next day, two days before Xmas, I sat on the couch after feeding my children and had a sudden pain so bad I stood up and blood gushed down my legs! And mango sized clots. My children were screaming I started to feel faint. I rang my cousin to come help me. At hospital they took me straight in for ultra sound and blood. I was losing so much they put me on a drip and antibiotics and prepared me for surgery. Apparently the D&C the week before had been incomplete and I had an infection.
I prayed. I was so scared and in so much pain. They gave me morphine. Another surgery, another lap and hysteroscopy. They found a punctured uterus from the botched D&C, as well as endometriosis covering my uterus, fallopian tube and ovary. An endometrioma cyst burst that morning. I was now diagnosed with stage four Endometriosis. They could barely get into my stomach to perform the surgery due to all the scar tissue from previous ops.
Now I have a blood test every two months to check my anaemia. I suffer from horrific pain every month. There is nothing they can do for me now unless I have more surgeries.
I can’t do this any more. No one understands the pain, the tiredness, the struggle!! I know when I’m ovulating because the pain is so bad it pierces my stomach and down into my legs. I find it hard to be a mum to my young daughters (2 and 4) when I’m hurting so bad inside. But I have to be strong, they need me! I pray that I can have one more child, then after that I will consider a hysterectomy for my own health.
I hope one day they find a cure, for all us sufferers.
I’ve had 2 surgeries this year. I saw my first ever gyno in January this year. I opted for one that I could get into rather than the long wait to see Dr Evans. I’d already had vaginal ultrasounds (2 prior to seeing the gyno). Nothing remarkable was shown – lots of follicles in ovaries. At the time I’d gone back on to Qlaira after seeing GP#1 and trying implanon, Zoelly, Qlaira earlier in the year. Mostly I was trying to manage migraines, ovulation pain and general yuckyness when I would get my period. However, I still got migraines with the OCPs and Implanon made me feel like crap.
I told GP#2, who specialises in women’s health that the headaches on Qlaira and Zoelly felt hormonal and she said they can’t be you’re on the pill. So the gyno suggested I have a D&C and get a Mirena. I thought ok lets do this . She didn’t think a Lap was necessary despite the pain I had explained to her. I also said I’d read a bit about diet and she just laughed and said diet wont fix Endo.
So I thought ok I’ll stop trying to eat healthy and eat what I like since the gyno said it doesn’t relate. This gyno said Qlaira is no good for me and put me on Levelen before putting the Mirena in. I was supposed to be off work just a couple days in Feb after the procedure – I was out for nearly 2 weeks! I felt like crap and had bad headaches.
My mental function deteriorated and my memory was bad. I decided to take control and had it removed. That was hell in itself because try and get one removed on a Saturday in Adelaide is no small exercise. I rang a private clinic on Friday night and they said they couldn’t do and to go to Women’s and Children’s hospital. I rang the WCH and they said just come in first thing in the morning. I didn’t think to ring my Gyno because I didn’t want to be talked out of it or be made to feel it wasn’t my decision and I wanted it done right away.
So it took 6hrs to get the thing out at WCH. There was just me and one other in the waiting room.. then I had to see a nurse then student doctors. This student dr couldn’t get it out, then he got a midwife to try, she couldn’t get it out and then finally the Dr on the wards came down and got it out. Talk about painful! They also seemed more worried about the Gyno being angry at them for removing it. I felt like crap and so angry. Had driven myself there thinking this will be simple in and out procedure. I was so wrecked by the time they got it out that I couldn’t even use the vending machine and someone was so kind to put $ in for me. Amazing how such a gesture can lift you after terrible experience.
So then it was back to my GP (well this is GP # 3) who’d arranged the ultrasounds and suggested I see a Gyno. I was experiencing terrible pains, looking very sick. At my worst (and even before the first surgery), I was taking temazepan (very low dose and infrequent) when the pain was really bad so I could sleep. I wasn’t on any OCP and feeling like crap. The GP offered me no help. She said she I was very complex and she was sorry there was nothing she could do for me and asked me “have you read this book on pain?”. I wanted to hit her in the head with that book.
Later that day I still felt so sick I rang the a/h of the gyno I’d seen in Feb and was in tears. In the end she agreed to do a laparoscopy which I waited 4 weeks for. During the 4weeks I was in pain sitting at work (thankfully I only work 3 days week in an office and the other days I’m home in my studio painting or resting). I had an understanding employer so that helped and a team of women at work that supported me.
The night before my surgery was horrific – the bowel prep and I had a PMT migraine. I rang the hospital to find out what drugs I could take – I think I took ½ temazepan. My surgery was delayed because I was so dehydrated and my head still hurt. The pre op nurse gave me Panadol. Then the anaesthetist saw me and said oh you could’ve had panadeine.
They put me on a drip before doing the surgery. I had the lap in June and yes lo and behold got a phone call the next day in hospital from the Gyno (she didn’t come see me) to say yes you had mild endo and she removed it. It wasn’t until my follow up appt a few weeks later she gave me the photos and said oh yes and you had tubal adhesion on one side and tubal cyst on the other side. She was quite dismissive of them and said you’ve probably had one of those since birth. And that was it… I was off on my own…. Nothing to manage future periods and no explanation that Endo can come back!
Recovery from the lap was hard and slow and most people just expected me to be all better. And I think I expected it too. To be honest since having the surgery the pain is pretty much gone. But having a period knocks me about. I think I tried to go on minipill after but didn’t agree with me. I tried to go back on Qlaira last week and gave me headaches and I felt angry/grumpy. I’m very sensitive to drugs. Unfortunately I came off and then got a period in a couple days and then a virus that knocked me about this week which meant two periods in a couple weeks.
I wasn’t satisfied with leaving things as they were after the surgery. I was under quite a bit of stress in the job I was in and have since moved jobs. The same time I started to see a new Dr in a new practice in August. He ran tests that other Drs hadn’t and stressed to me the importance of some of the results I had – No Progesterone, Iron deficient, Vit D deficient, B12 deficient, low DHEA. This is when I started on the Vitamin D, Liquid Iron, Profeme, DHEA.
I’ve had a number of follow ups with him since just trying to get levels right. My iron had gone down not up so that’s still a mystery. We also then got the results of the MTHR test which showed I had an AMH level of 58.6 indicating possibility of PCOS. For years I’ve had elevated liver enzymes but I don’t drink heavily. I saw a liver specialist 5yrs ago who said its fatty liver. I’ve since read there is connection with PCOS and Fatty Liver.
I’m booked to see Susan Evans in February.
One thing I’ll add is that I started doing Pilates this year and its helped on a number of levels. When I was struggling the most I was using an app called Headspace for nightly meditation. And at least now when I get my period I don’t have heart palpitations – I still have lots of other horrible side effects like headaches, diarrhea, nausea, bloating, cramping.
(The attached photo was taken at an exhibition opening a couple weeks ago – I was having my period and felt like throwing up. Seeing the photo I couldn’t believe how well I looked on the outside knowing how horrible I felt on the inside! No wonder people without endo don’t get it.)
Over the past week I watched the EndoActive conference dvds “Shared Perspectives on Endometriosis”. Very powerful information and to be honest more useful than the Drs I’ve seen to date. To not feel alone and to be empowered with information is an amazing gift you’ve given so many women. A MASSIVE THANK YOU! Also I have to say I cried through the personal stories – especially yours Syl as you get it!
I‘m a 32 year old Mum. Both my 26 year old sister and I have always had painful periods and used many forms of pain medications to control our pain. Endo does run in the family: both my Mum’s Mother (my grandmother) & my Mum’s Sister (my aunty) had it. Not sure what management was used in my Grandmother’s treatment but I do know that my Aunty has had a hysterectomy after failed attempts at other forms of management. My sister’s pain sometimes gets so bad she has passed out and has had to take time off school or work. We are not sure exactly what causes my sister’s pain but she can manage it with diet and we think she may have issues with things such as gluten and yeast which seem to be the biggest culprits for her pain. I suspect that she may also have issues with Endo. My periods were always very painful and heavy. We thought that was normal.
I fell pregnant with my son (now 9 years old) when I was 22 – it was a difficult pregnancy and birth which took me 6 months to recover from. When my son was two his father and I parted ways.
I was diagnosed with Endo in 2015 after a couple of months of increasing pain around the time I changed the birth control pill I was taking. I had such excruciating pain that my partner took me to hospital to seek help. They gave me strong pain medication and sent me home saying that I should get better within 24 hours. Not to be. My pain continued to get worse over the course of a few months; several trips back to the doctors and stronger pain medication. At one point I was taking 1 x 20/10mg of Targin in the morning and at night, 6 x 5mg of Endone per day and 8 paracetamol tablets per day to try and numb the pain. I was virtually a legalised junkie and I couldn’t drive or work.
My partner would have to help shower me and I would often collapse in pain on the shower floor. I pushed to see specialists and got in surprisingly quickly to a Gynecologist who tried to convince me to try the Mirena first to see if that helped my pain. I said no because we planned to try for a baby at the end of the year and I am not keen on having the Mirena anyway (personal preference). So with a little convincing she agreed that they would do a laparoscopy and investigate the cause of my pain.
About a month later I went under the knife. The operation was a success – what did they find? Yep it was Endo. Only several small patches of it (probably what you would class as stage 1, I suppose) however it was enough to cause excruciating pain. What a relief to have a diagnosis.
After that I continued to take the pill for one more month and then as a couple we made the decision that there was a good chance that my body actually has issues with the pill and I came off it. We thought that due to the trauma my body would not be ready to bear life for several months but we didn’t care if it happened earlier. I had a perfect relatively pain free 28 day cycle after coming off the pill. About a week later the 5th of July 2015 we got married and on the 18th of July I had another relatively pain free cycle. This felt awesome. My operation had been a success and although I still had some pain it was nowhere near as bad.
After we got married I suffered several bad colds and when my next period was due I felt pretty miserable. 28 days came & went. At 35 days into the cycle I was getting pains like I was about to get my period and feeling miserable I went to the doctor who said that I was suffering from a viral thing and bed rest was best. He also promptly sent me off for blood tests to check for pregnancy. I got impatient because I knew I had to wait a day to get the results back from the blood test so I bought myself a home pregnancy test. It came up with two blue lines – a positive – which the doctor confirmed.
I had an Ultrasound at 6 weeks pregnant to ensure that the baby wasn’t growing in one of my tubes; apparently there is an increased risk of this after Endo. It showed that baby was in the right spot. After a bleed scare at 8 weeks and then again at nearly 10 weeks another Ultrasound showed baby was doing just fine and they could find no reason for the bleeds. I have since had 2 more Ultrasounds one at 12 weeks & then the 20 week Morphology Scan which confirmed we were having a girl.
It certainly hasn’t been easy: barely recovering from the laproscopy, falling pregnant, having terrible morning sickness (all day sickness), experiencing extreme baby-brain and fatigue, major mood swings and then being diagnosed with Pelvic Instability at around 12 weeks and experiencing terrible pain through my lower back and hips. I have also copped pre-natal depression. It has been one hell of a year and I am thankful for three things: that my Endo was caught early & treated, that I have a healthy baby girl growing inside me and for my incredibly supportive husband who hasn’t walked away despite all the challenges that we have faced. And one more thing: a great support group in EndoActive.
Thank you for allowing me to share my story.
UPDATE: My husband and I delivered a healthy baby girl at 37 weeks & 3 days gestation on the first week of April 2016 via a planned C Section. Her name is Franca she weighed 3.63kgs (8 pounds) & was 50cms long. After my Endo complications last year I suffered terribly throughout my pregnancy & threatened pre-term labour at 30 weeks. Turns out that I have an Irritable Uterus so was put on medication and requested a C Section. We are home now and on the mend. Lori-Anne
I was diagnosed with Endo at age 20. I also have PCOS, adenomyosis and pre-cancerous uterus cells. I’ve had around 11 surgeries since I was diagnosed and have tried every treatment, pill and herbal remedy available. The first specialist I saw at first denied I could ever have Endo because I was “only 20”. After being admitted to emergency twice because of the pain he finally agreed to exploratory surgery and low and behold it was Endo, classified as severe.
I only have one ovary due to PCOS. After it was removed my specialist recommended that I do IVF after harvesting my remaining eggs and then have a hysterectomy to manage the Endo and other things. I went along with this, trusting him.
I found out all about IVF and how an unfertilized, frozen egg only has a 20% chance of success on thawing compared with fertilized eggs. My specialist recommended that I consider getting donor sperm to fertilize my eggs and freeze the embryo if I wanted a better chance of success later on. At 24, I wasn’t really comfortable with doing this and the whole thing didn’t sit well with me. But I booked in to harvest and freeze my eggs and I also booked in for the full hysterectomy (which would have put me into early menopause). I was due to start the process in 10 days. Then, just on a whim, I decided to go and meet with another specialist.
She almost fell over when I showed her all my results and explained the treatment I had been recommended. Apparently it was all totally unnecessary based on my results and egg count. She told me that my other specialist “had a reputation for recommending unnecessary surgery “. (Who knows why? Perhaps he gets a cut from the IVF clinic?). This naturally totally shocked me. I decided to get a third opinion from another specialist – who said the same thing.
Unnecessary surgery! I nearly put my body through the stress (not to mention the cost) of harvesting my eggs and then having MY ENTIRE UTERUS AND LAST OVARY REMOVED and I’m only 24!!!!!!
I’m now holding somewhat steady with a treatment of The Pill and two Mirena IUD’s inserted.
I’ve always put so much trust in doctors and specialists and I just want people to know that sometimes they get it wrong. There are some absolutely amazing specialists out there, like my current one, and then there are some truly shit ones too. I want everyone on EndoActive to know how important a second opinion is when it comes to their health and potentially having a hysterectomy.
I’m 24 and it has been 15 months since my lap confirming my diagnosis of Endometriosis. When I was 14 years old I began experiencing a sharp pain a little to the right of my belly button that would last for up to 5 days and start roughly 3-4 days before my period. The first time this happened I was kept in hospital overnight while they did a million tests and were certain it was appendicitis – except it wasn’t. They concluded that it was nothing serious and without any diagnosis at all they sent me home.
When I was 16 my periods became extremely heavy, the cramps were so painful they would sometimes make me vomit and I bled from my bowels every month. I saw 2 doctors that gave me the “it’s normal, all women deal with it” speech and made me feel like I was just weak because I couldn’t handle it. For almost 6 years I lived with the pain in complete silence.
When I was 22 the pain near my belly button had ….. evolved. It felt deeper, stuck around longer and started mid cycle instead of at the end. I went to a clinic close to my work (I was very fit and healthy and hadn’t needed a GP since moving to Australia from NZ 4 years prior) the doctor who saw me decided to do every possible test to find the reason for the pain, this led to a Pap smear which came back positive for extreme grade 3 precancerous cells. I was advised that it was not the cause of my pain but it would have to take priority, part of my cervix would need to be removed asap- within the next six weeks – then we can get back to the matter of the pain.
Unfortunately due to an incompetent head gynaecologist at the hospital I had been referred to, the operation was delayed by 6 months. In the meantime, the increasing abdominal pain meant I was unable to fulfil my duties at work and I agreed to step down and take a part time position that was a little under half of what I was previously earning, on the assumption that I would have the operation and get it all sorted out in a couple of months.
When I did finally have the operation they decided to also insert a Mirena to help with my periods. Unfortunately (I know, this word comes up A LOT) after the procedure I found that the pain had tripled- no, quadrupled at least! I couldn’t stand for more than a few minutes at a time. I couldn’t think straight, my entire stomach was swollen and sore yet once again not only did the hospital refuse to see me, they refused to prescribe any pain relief and told me it was simply a minor operation and there is no way I could be in as much pain as I was describing.
4 weeks and 8 doctors later, all with the same opinion, telling me to take some panadeine extra and “walk it off”, I finally found one who immediately checked my cervix, removed the Mirena and started me on antibiotics to clear the infection in my uterus. Within days I was back to normal but I had already lost my job completely, was 2 weeks behind on rent, had bills out the wazoo and the nightmare was just starting.
During this visit, Dr D listened to the symptoms I’d been experiencing for the past 8 years and that was when I learned of endometriosis.
He sent a referral straight away to schedule me for a laparoscopy but due to my financial situation and the public health system in QLD it was another 9 months before I actually had the procedure. Luckily in this time I got a job in an office where I was able to sit down all day which helped with my symptoms considerably.
I started planning for my future again. The doctors at the hospital explained to me that during the lap if they foundd any endo they would take it out and then *poof!* I’ll be all better again! Seriously, that’s what they said accompanied by a bit of “there’s only a 5% chance of the endo growing back”.
After the op I did feel better, maybe it was positive thinking? As soon as the 4 week mark hit I signed back up to the gym and started looking at where I might want to buy a house before I go travelling overseas. At 10 weeks it was all over.
The fatigue hit first. I was sleeping through my alarm and finding it almost impossible to get to the gym; if I did I would be so tired I would be forced to leave work early. Then my period started. Every step I took felt like I was having contractions. My pain was at a constant 8-9 for 3 days straight but it was a type of pain I had never felt before. The hospital gave me one endone and sent me home. That’s when my research started. Since then I looked into all of my options and found the best for me would be to move to Melbourne to be treated by Prof Maher.
Unfortunately I had to leave my job in Brisbane sooner than I wanted to due to my deteriorating health and though I had organised a part time job for when I settled into Melbourne, it soon became clear that due to my severe fatigue and pain it is not a possibility.
And so here we are. My poor mum has been trying to support me from across the country for the past 6 months as I am unable to receive any assistance here. I do aqua physio twice a week, I’ve been attending a pain clinic and working with a sleep specialist to try and manage my fatigue but I’ve got a long way to go and at least 6-8 months before I have my next lap.
Honestly, it’s tough. I’m doing all I can for my physical health but mentally it is so hard not knowing if I can scrape together even the $6.10 for my prescriptions. I hate watching my loved ones go into debt because of me. The few times I’ve asked for help elsewhere I’ve been shot down in the worst ways because of their ignorance about Endo and what it can do.
I need help and I just don’t know where to turn.
I’m 24 years old originally from Queensland. Since the first time I had got my period when I was 13 they have always been irregular heavy and painful and my periods would last 7-9 days. I thought it was normal as I never heard of Endometriosis until I was 20. My mum seeing the pain I would go through first thought it was just a normal period and I was overacting but finally when I turned 16 she took me to the doctors to find out what could be done for me. The doctor simply told me my body is still going through and adjusting to puberty so he put me on the pill to help regulate my period. I had put up with the pain and heavy periods thinking it was just normal.
When I turned 18 I noticed that when my chick mates had their period they weren’t curled up in bed from pain, didn’t have heat packs on their tummys, didn’t find it hard to move around without dropping to the floor curling up waiting for the sharp pains to stop or taking panadol every 4 hrs like I did. So I went back to the doctors and asked what could help me with the pain I go through. I saw about 5 doctors over 2 years who just told me it’s normal and to take panadol for the pain.
Finally I found a doctor who explained Endometriosis to me and that I could possibly have it and because I was on the pill I could have my period every 3 months instead of every month so I wouldn’t be in so much pain. For 2 yrs I had tried different pain relief medications prescribed by my doctor. But nothing worked no matter how strong the medication was it didn’t help me at all. He had me on blood thinners to try and help the heavy bleeding, he put me on muscle relaxers to see if the pain would calm down if my muscles were relaxed. I lost count of all the ultrasounds external and internal ones I had to have, all the blood tests I had to go for. I felt like a pin cushion.
At the end of 2013 I was referred to the hospital to see a gynaecologist. I waited 5-6 months for an appointment. I waited another 4 and a half months for my surgery. The Gyny told me I had 5 spots of Endometriosis in-between my uterus and bladder. After they burnt those parts off they put a camera in my uterus to have a look at my tubes then put a mirena in. He then told me with Endometriosis there is no cure. Surgery is a temporary thing which means I will get it back maybe in 6 days or a couple of weeks or months or even years.
In the first 2 months I noticed I had gained 13.5kgs and I felt ok. The pain wasn’t as bad. The mirena helped with the heavy periods. I thought it wasn’t too bad until one day I got the excruciating pain back which made me drop to the floor crying waiting for the pain to ease a little so I could go lay in bed. I lay on the kitchen floor 15 minutes before I could get up. I knew right then it was back.
The next week was my follow up appointment with the gynaecologist. I told him what had happened but he really didn’t seem that worried about it just prescribed me more pain relief that didn’t help and told me the weight gain was me eating to much and referred me to a dietician.
The next month I was under stress due to a family matter which caused me to get my period. I bled for 9 and half weeks straight. It was out of control. Around the 6th week I had another appointment with the gynaecologist and I told him I wanted the mirena out. 2 weeks later I had it removed and went back on the pill. My doctor told me the pain I experienced 2 months after my surgery means my Endometriosis is back but I wont be able to have another surgery for at least 2 years.
I am back on the pill and I have my period every 3 months like before my surgery. I have had really bad migraines unusual spotting and pains when I’m on my active pill. I never had this before my surgery.
I am now living in a new town where my new doctor is really good. I had to tell him about my Endometriosis. He hasn’t had a patient with this before so he wanted to know what it is that I am going through and ways he can help me out. I have a diary where I keep note of my pain and periods. I started this after I had my surgery.
I have been referred to the hospital to have another surgery. The doctor got me to go back for more ultrasounds, blood tests and all of that to send with the referral to the hospital. In one of the ultrasounds he found out that I now have a hernia as well which could have been caused from my first surgery so now I’m waiting for 2 surgeries instead of one.
I have battled with depression for 12 years. When I was told about Endometriosis and that I may not be able to have kids I felt like my world had disappeared. It came crashing down in front of my eyes. I’ve always wanted to have a family. But I have read letters from other girls and they have had children so I know its not 100% I can’t have any.
I just want other girls to know you can’t give up on hope. You always need hope in your life. Life can be a bitch butI will never lose hope. Endometriosis can KISS MY ASS lol. Thank you for reading. Sorry it’s so long.
Tina moved from Melbourne to Toronto 2 years ago and she wrote to us asking if we knew of any support groups over there. (We found one!) We are delighted to publish Tina’s Endo Story: Guilt is the worst part.
Hi Ladies, I follow this Facebook page and Syl’s blog and I remember last year reading an article about how Syl went to a family wedding and her Mum had to pick her up off the floor in the bathroom. It resonated with me because it reminded me a lot of myself and my Mum. Since then I have kept up with Syl’s story over social media and the news and have always thought about how awesome it is that she has spoken so publicly about Endometriosis and what a huge support system her Mum is. So I thought I would share my story.
I’m 27 (turning 28 soon). Ever since I can remember I have known what Endometriosis was. My Mum had Endometriosis (she had a hysterectomy when she was 42) and I remember that when I was a little girl she was very open with me and my sister about it and we both knew that it was hereditary. I kind of accepted the fact that I would probably have it when I got older but I brushed it off thinking it only meant I would have more painful periods than most girls.
From the age of thirteen my periods were really painful but I still went to school and went on with daily life because Mum had set such a great example and I thought it must not have been so bad since she never really complained about it. It wasn’t until I was twenty that I noticed my pain becoming severe. I remember once being in the kitchen and collapsing on the tile floor partly because of the crippling pain, partly because I was going to faint and vomit. I was calling out to Mum who was in the other room and she didn’t hear me. I remember she walked into the kitchen and had to pick me up off the floor. That’s when it set in that Endometriosis was a serious illness and it was going to affect me for the rest of my life.
I decided to see a new doctor after the incident. I’d had years of hearing “you’ll be fine just take some Nurofen”. I stopped having periods and put on a ton of weight. After some testing I found out I had PCOS and that I most likely had Endometriosis but I couldn’t be given a definite answer until I had a laparoscopy. I remember telling Mum and the look of guilt in her eyes killed me, it was as though she thought it was all her fault. I hid a lot of my symptoms and suffering from her after that because I didn’t want her beating herself up over a disease nobody has any control over.
When I was twenty four I had a Laparoscopy, Hysteroscopy, D+C. I didn’t have private health care. I was living in constant pain; lower back ache, heavy aching in my uterus, extreme tiredness and sex so painful that I would cry into my pillow afterwards so that my boyfriend didn’t know how much it hurt. My parents helped me pay for my surgery which was over $6,000 and I’m still paying off the debt I owe them. I feel guilt over it most days.
I often heard from doctors that I should start trying to have babies as soon as possible and that after the age of 28 it was very unlikely I would be able to have children. My 28th birthday is less than a month away now and I know I’m not financially secure or mature enough to have children. I’ve been with my amazing boyfriend for 6 months. I know that he isn’t bothered about children right now but it’s always in the back of my mind that one day he will want them and I won’t be able to give them to him and that he will leave me. I’m worried I won’t ever find someone who wants to be with a woman who is “barren”. I also feel guilty that I will probably never give my parents any grandchildren. But most of all I feel guilty that deep down I’m not sure if I even want children and that this makes me less of a woman.
To top off this guilt in the last six months I’ve noticed my daily symptoms returning in full force. Yesterday I had to take my first day off work because of Endo since I had my first operation three years ago. I wasn’t on my period it was just a normal day mid cycle but the pain in my back and uterus was so bad I couldn’t stand up.
Now I’m in constant pain; my back aches, my uterus hurts and I’m so, so tired. This is what I live with everyday not just when I have my period. I don’t bother telling people I have Endo anymore or trying to explain to them what it is because I can’t be bothered with their stupid replies or the lack of interest in their face. I know people don’t think it’s a real disease and that I’m just a whinger who just can’t handle period cramps.
I mostly just want to say thank you because reading your posts have helped me so much. When I asked for a support group in Canada Lesley and Syl were so quick to reply, I almost cried they were both so kind. I’m going to my first support group meeting this week and I’m really excited!
Endometriosis isn’t curable and I know it will only get worse as I get older but knowing that I have some support and that there are other women going through the same thing really helps.
Thank you. Love, Tina xx
For 3 years, I have been in Pelvic Floor Physiotherapy every fortnight due to my over active pelvic floor. This occurred due to the extreme pain I was experiencing from my Endometriosis and chronic pelvic pain that had been going on likely from the age of 8 years old.
Walking had become difficult, my pelvic floor constantly went into spasm, my legs would twitch and I felt a constant heaviness in my pelvis, so I was happy that I could work with someone to help improve all this. I was making progress and the twitching stopped, the spasms slowed down and walking became a bit more comfortable for me but I still had a long way to go. Each time my Endo flared up, I took a big step back in the progress I had been making in down training my pelvic floor. It was frustrating to say the least. But I carried on because if I went longer than 2 weeks between appointments, I would be in agony.
2 years went by and I felt like I wasn’t making near as much progress as I had been. My pelvic floor wasn’t improving but I had to keep up with the physio as otherwise it would worsen. It was around then that I learnt about the use of Botox in the pelvic floor from my physio. However it wasn’t available in Queensland yet.
About 6 months later, I was at the Endo Active Conference in Sydney where I leant that the pelvic floor Botox procedure was coming to Queensland. I felt so much happiness that I could possibly get more long term relief from the pain my pelvic floor was causing me.
So at the end of July, I had pelvic floor Botox done in theatre with a general anaesthetic. Waking up in recovery, I felt like some of the heaviness had gone but that night as the local anaesthetic wore off, I started to feel very different. I can’t really describe it, but it was definitely a good different. I got up for small walks frequently and noticed small improvements each time in how my pelvic floor felt. I was shocked by how noticeable and quick the difference in my pelvic floor came. My balance was quite off, so I did have to be rather careful and take things slowly. I wasn’t experiencing intense pelvic floor spasms as I was walking which was a huge change for me. The twitching had completely stopped and sitting and laying down was so much more comfortable. Once I was able to get home, little by little, each few days, I was noticing improvements in how I felt and what I was able to now do.
I am now 4 weeks post op and I am so happy that I went through with this procedure. Pelvic floor Botox will not make any improvement to my Endo, but it has made the pain I experience from that so much more tolerable as when I cramp or feel pulling up my right side of my stomach, my pelvic floor no longer goes into a spasm from that pain. My wonderful team of Dr’s and health professionals are really happy with the progress I have made. I have really enjoyed being able to sit through a movie, go for a beach walk, spend a few afternoons shopping with friends and family, return to my studies and sit, lay down and walk so much more comfortably.
It is likely that I will have to have pelvic floor Botox done a few times to get a more permanent result but we hope it will be at least 6 months away. And I will keep up with seeing my pelvic floor physio but just not every fortnight now! I am hoping to be able to go 4 weeks comfortably at least between each appointment. I urge anyone who thinks they may be experiencing anything similar to speak with their specialist and see what options are available.
You don’t have to put up with pelvic floor pain.
I’m 49 now but I’ve battled with Endo for years. I had ‘suffered in silence’ for years thinking ‘Well, this is something most women have & I shouldn’t complain.’ I’d been admitted to hospital in my 20’s (I turned 49 in August) with non-specific abdominal pain and told by doctors back then that it was ‘mittel-schmertz’ i.e. mid cycle egg release pain. They gave me fluids and an NSAID.
Being a registered nurse in the UK and then mainly in the US, I’d always had pretty good access to healthcare, had a regular GYN yet like so many that care for others I’ve often neglected myself.
I was ‘officially’ diagnosed with stage III endometriosis following a laproscopic tubal ligation in 2005.
After my diagnosis my doctor wanted to start me on Lupron shots and I went home and researched (thanks to the internet!) this medication. I was horrified to read many women’s accounts of the crippling side effects of Lupron. I decided against this treatment and plough on in to more natural & holistic ways, maintaining a healthy diet and best of all…exercise. I would swim everyday, jog, lift weights and play tennis. I avoided medications, especially opiates which aggravate the symptoms of bloating, constipation & irritability (although they do relieve pain when used judiciously).
Following a job relocation to San Francisco in early 2006, my new GYN wanted to place me on Prozac in short bursts to help me with the depression but I was already taking Wellbutrin (an odd antidepressant that increases irritability & caused insomnia and negative thoughts). I knew that a hysterectomy was probably in my near future but I had legitimate concerns regarding any surgery.
I started running a lot. Sometimes 5 miles twice a day and I’d include the Pacific Heights Hill just to increase my work out, plus the view is nothing short of magnificent! I thought I had a handle on things but my mood swings, pelvic pain and agitation worsened. I worked night shift and often kept on going for long periods in a stressful environment on very little sleep.
Then something bizarre happened and I can’t contribute this solely to endometriosis (and then maybe I can): I sought out heroin on the street. I’d found something that totally took the pain away! At least at first, and then amazing quickly I found myself heavily addicted. Jim Carroll (The Basketball Diaries) writes about the ‘flip of a switch’ when this happens in some people and I could absolutely relate. I ‘circled the drain’ on heroin for 2 1/2 years and completely destroyed my career, many relationships and my home life.
Wow…I landed smack dab in the world of homelessness with a massive bump! I felt dazed & wondered ‘How did this happen?’ It became increasingly difficult to access medical care and if I was able to see a doctor, I invariably could not afford the prescriptions. I quit heroin cold turkey in November 2010 yet struggled for a couple more years and did wind up on Methadone which helps pain post addiction but carries the weight of many untoward effects too. My depression, bi-weekly menstrual episodes worsened and I continued to shrug off the God awful symptoms thinking ‘Don’t complain, Helen, there’s always someone far worse off than you!’ I found some help in Nashville at the Mental Health Co-op but all they wanted to do was keep prescribing and increasing doses of anti-depressants.
Then, miraculously, a friend gave me some Gabapentin, a non-narcotic medication that has quite frankly changed my life yet the doctors refused to listen to me and it took me a while to get it prescribed. One doctor even scolded me for taking it!
On Gabapentin, I quit Methadone, all the anti-depressants and moved to Austin, Texas. My pain is considerably eased these days. I worry much less and feel in control of a healthier lifestyle. The state of Texas has a comprehensive medical access program for low income and homeless people, with very little or no co-pay for care & medications.
Next week, I have a surgical/gyn appointment. It has been such a long time coming! Thanks to the people & state of Austin, Texas I’m receiving excellent care even though I’m penniless. And despite lingering concerns about surgery, and possible complications, I’m pretty excited at the possibility of this part of my journey being over. No more to counting on just one hand, the good days I experience once a month!
Better time spent too, with my dedicated and devoted partner, Vernon Rust who through learning, understands how I feel and because of him, I found your organization at Endoactive Aus/NZ.
Here is my blog: www.helenbirdart.wordpress.com
I am truly blessed! Thx for getting the word out. Strength through understanding.
Sometimes it helps to write your own story down – you can see the big picture more clearly. And it helps to be supported by women who understand what you’ve been through.
Emily shares her story:
Writing about my journey has been something I have wanted to do for years so thank you for asking me to write a bit about my journey with endo. It seems to have consumed so much of my life so far so it only seems right that I write down all of what it has taken away from me but also what it has given me. This may be the best therapy I will ever have.
I remember when I was at school and got my period. I remember thinking about how weak I must be compared to everyone else. I remember literally that feeling of the first drip of blood and how instantly my pelvis would go into this intense cramping. I remember I would lay in my side and cycle my legs around on the bed. Round and round as it seemed to help. I remember fainting, I remember vomiting. I remember knowing it was coming, like listening to a storm in the background coming your way. I would feel it coming and that is when I knew I had to take pain relief because if it came and I hadn’t taken it, it was so much worse. Unbearable. I clench my knees together just thinking about it.
I don’t remember talking about it much as I just thought that was normal and I must have a low pain threshold.
I remember going to my specialist because mum didn’t think it was normal. I remember him saying that the only way to check was to have the operation. I didn’t know my grandma had it. After the operation my doctor told me that he had never seen it that bad in anyone my age before (19). He said it was everywhere. Very inflamed and horrible looking. As most people say I was almost relieved that I had the right to acknowledge my pain and I wasn’t a hypochondriac after all. After the fist op I got the details of what endometriosis was but to be honest I still didn’t understand it. I was given the news about not leaving having kids for too long and was sent on my way.
After that I think it was about six months later I was camping with friends. In terrible pain, it honestly felt like I had eaten something bad. It was Easter and we were at Brunswick Heads, everyone was having a great time. I tried to drink and pretend I was fine but I just couldn’t. I started vomiting bile. I was so unwell. I can’t believe I didn’t listen to my body but I didn’t think it would be related to Endo. The ambulance came and I was taken to a nearby hospital. They said I had a stomach bug and sent me back to camp. I slept all night but was so sick when I woke up. I was covered in sweat and was so dizzy and nauseous. I got driven to another hospital where my parents met me and there we found out a cyst had ruptured on my right ovary and attached to my appendix. They operated and removed my appendix and a lot of my ovary.
The next operation was in Melbourne. This time symptoms were much the same. Swelling and IBS symptoms took over my life for a good couple of months before I went in again. I actually had a colonoscopy done first to rule out anything relating to the bowel. This time he said my Endo was not too bad. Adhesions were the main problem this time. He said everything was stuck together and it looked like a big cobweb. He then treated the adhesions with a spray and my whole right side blew up and was like I had an allergic reaction. It was so strange. Also he suspected adenoymyosis. They can’t confirm this until it’s out and sent away but he was pretty sure that was another problem I should be aware of.
After that we decided we would go off the pill and not exactly try to conceive as such because we weren’t really ready for kids but we were happy for things to happen naturally. If it happened we were ok with that too. Trouble was that as soon as I went off the pill I would develop cysts on my ovaries and a lot of times they would rupture and blood would be left sitting in my pelvis. This was so painful. Also another problem of going off the pill was the pain of ovulation. By this stage my period pain was not as bad but the new pain of ovulation was so painful. The last thing I felt like doing was having sex. At 19 being told I may not be able to have kids was definitely something that really played on my mind. I understand the need to tell people that but I think it sent me a bit crazy too. It was a big stress in my life as I was definitely someone who had always wanted children.
A year and a half later I needed another op and we were keen to start IVF as being off the pill was very painful. So we did IVF. It failed. I went on zoladex for four months to try and clear up the Endo that had been produced from the IVF process. This was my third time on zoladex. He had given me the injections for two rounds in previous years. These were horrible. I gained weight, was a moody bitch, dry vagina… all the great stuff. However I must say the pain was a lot better after each round. A round was either three or four injections, one per month.
After the first failed IVF I discussed putting two embryos back in. My doctor doesn’t usually unless you are over 40 but was happy to in my case because of my situation. We then put two frozen embryos in and the scientist told us that we will have twins. We were happy with that because the stress of doing it all again would be gone. We had twins in March 2012. A boy and a girl. So happy, I felt like something had finally gone right for me.
I had a glimmer of hope as a lot of people said after kids your symptoms can be gone or at least decrease. Nope. Having pain when you can just lie there is hard work; having pain when you have to run after two toddlers was indescribable. I was breaking. I felt like I could not handle this pain anymore. I had to rely on my mum. I felt like the worst mum. I was so unhappy and in so much pain.
I walked into my doctors office and before I said anything he looked at me and said “it’s time isn’t it?”. He was talking about hysterectomy. I wanted it then and there. I didn’t know how I was going to do another day without losing my shit. It was taking over my mental health and I was not coping at all. Every movement I made was painful. My left hip was particularly painful. I told him about my hip and the doctor said it wasn’t related.
I had thought so long and hard about a hysterectomy and read all the blogs that had said it might not cure Endo. I had nothing else left to try. My doctor had said in my last operation that to touch my uterus it would just bleed. It was just all so angry looking and red. I wanted it done and I wanted my ovaries out too.
So in October 2014 I had a complete hysterectomy. I was 29 and it was a little bit devastating. After the operation I was fine. It was fine to recover from physically. Doctor reported that the whole pelvis was red, angry and very stuck down. He said removing my ovaries was like chipping away at concrete and something that should have taken ten minutes took an hour. He was very worried about my urethra as that was the area where he had to chip away.
I had read that people often felt a sense of loss after a hysterectomy. I didn’t really understand that as I didn’t want any more children and I don’t really see myself as just a uterus. However I did feel a sense of loss. I felt a grief that I don’t think I realised at the time but I think it was grief of the last 10 years and what I had gone through. It was also anger at my body, anger at people who have a great body that doesn’t give them pain. I felt guilt. Guilt that my husband had married a dud. Married someone that has problem after problem and is terrible at anything in the bedroom because of the pain. Guilt that this is something that I might pass onto my kids. Frustration that people think I am fine because I look fine. Frustration that I was getting fatter by the second and wasn’t able to complete the exercise I wanted to. When you are constantly bombarded by pictures of hot women with slogans sayings “no excuses” bla bla it’s hard not to get down about what your body can do. Or can’t do.
I started HRT straight away. A few months after my hysterectomy I got a blood test as I was crying at the drop of a hat, feeling very emotional and just not quite right. Blood test showed that I had way too much estrogen for somebody with no ovaries. They were a bit baffled and said that perhaps I have a third ovary hidden somewhere!
It’s now 18 months since my hysterectomy. Although a good chunk of that has been without pain I haven’t felt good. My weight gain gets me down a lot. Today my tummy is so swollen I literally look pregnant. My son asked me if I am having a baby this morning. I am back to having so much pain. My thighs are hurting. My hip is so painful again. It hurt to wee in the morning.
I’m going back to my doctor on Thursday. Will find out more then.
In high school, my monthly period pain slowly became a daily pain. A constant dull, dragging, aching pain in my pelvic area. Imagine the pelvis is like a bowl. The muscle and bones make the bowl and the pelvic organs are inside the bowl. For me – it was mainly what was in the bowl that hurt, but eventually the whole pelvic area hurt too. In the 1990s when I stated clearly to the doctors that I had this constant pain, I was told that “it was in my head not my pelvis” and “here – have some anti depressants”. My mum tried her best helping me through the pain but because we both listened to the doctors we were both made to feel that I was “going on about nothing”. It is very sad that girls are still being told this rubbish today.
I left high school in 1994. It was 13 years later that I was formally diagnosed with endometriosis after having a laparoscopy with Dr Michael Cooper – despite having endo symptoms that whole time. Had I been taken seriously about my pain at high school – I might have been given a better road map regarding how to navigate this exhausting condition. It would have been great if the following pain management strategies had been implemented: Learn about which family of pain medications I should and shouldn’t mix, be sent to a pain specialist counsellor, and a pelvic floor physio-therapist who specialises in reducing pelvic pain, and an endometriosis surgeon who does excision surgery. Perhaps I could have been encouraged to pick a career with low stress and flexible working hours for when I was unwell and to start trying for a family earlier rather than later because many women with endo have fertility issues.
Finally, at 38 years old, I have beaten infertility and have twin girls thanks to ivf. Hopefully by the time they get their period there will be a simple saliva, pee or blood test to screen for endo so that they can enter this disease platform prepared.
Now I’m working with a multidisciplinary pain team to keep my pain in check and have learnt that the “healthy person goals” I always strived for have to be tweaked in order to be “endo friendly” and allow me to have a more realistic framework. It is also helpful to have a sensitive partner and friends who understand that you are not faking the pain and who can help support your journey with this disease.
I encourage anyone who thinks or knows they have endo to buy the EndoActive DVD because if I’d had access to this 22 years ago I would have navigated my life in a much more endo-friendly way.
It seems strange to write about my ‘journey’ with Endometriosis. Like I’m Huckleberry Finn or Frodo Baggins setting out on a great adventure (HA). There are so many women with similar or much, much worse stories out there. I wasn’t sure it would be worth the keystrokes.
The thing of it is it took me 12 years of active symptoms to get diagnosed. It took being told by an Endometriosis Specialist that I probably had psychological issues, as I definitely didn’t have Endo. It took losing my faith in medicine and myself and finally most of my right ovary before I was diagnosed.
To be fair, in that time I’ve moved repeatedly from Melbourne where I was born, to Auckland, Brisbane, Sydney and back to Auckland again. The “average” diagnosis time for Endo is 8 years. I wonder if I hadn’t moved would I have been diagnosed sooner?
I’d never heard of Endometriosis as a teenager, nor in my 20’s. I didn’t come across the term until I was 37. And the symptoms sounded so, SO much like my life I was SURE I had it.
But back at the age of 27 my biggest problem was digestion. It seemed I started having trouble digesting wheat. My GP tested me and I didn’t have Celiac disease so I was probably just “sensitive”. My digestive issues slowly escalated over the years. I went to dietitians and naturopaths and GPs. I was told I was allergic to everything and nothing. I went vegan on the advice of a naturopath and I looked amazing. But I was suffering hideous stomach pains and I was starting to suffer horrible vulva pains as well. Strangely it took me several years to realise that the two issues weren’t separate.
Some time around then I started having pain with sex and slowly over the years my periods got heavier and heavier. I remember being at work one day. I had just changed my “over night” pad (tampons were far too painful). As I was leaving the bathroom a rush of blood left my new pad full and blood splashing down my legs onto the floor. It honestly looked like a scene out of Carrie. I was SO glad no one else saw this and also lucky I had my gym clothes with me. I pretended I spilled coffee on my skirt. I had several more accidents after that although never quite as bad. I was now terrified of being in public when I had my period.
During this time I can’t tell you how many GP visits I made. Nor how many swabs I had for thrush or bacterial infections. They all came back negative but I was sure I was somehow “unclean” due to the vulva pain I was suffering. I found the pain was worse before and after my period.. I was POSITIVE I had some kind of hideous infection. My GP told me it was probably just the soap I was using.
I was now living in Brisbane and I started a round of gynecologist, dermatologist, GP and naturopath visits in a desperate effort to figure out why I had such bad digestive and vulva pain (I still didn’t think they were related). I even went so far as to hold vials of “allergens” while getting magnetised to “cure” my stomach pains… seriously, no matter how desperate you are, don’t do that, it doesn’t work!
My Gynecolgist told me there was physically ‘no cause’ for my vulva pain. Although I had developed Lichen Simplex as a result of it. It was likely psychological, possibly the misfiring of pain messages from my brain. I was put on an anti-depressant (Endep) that would suppress nerve pain. Shockingly (to me) it worked and I was so relieved. You can imagine my devastation when, after upping the dose repeatedly, the medication stopped working after only a few months. My Gynecologist at this point felt it was psychological or environmental and as I was moving to Sydney we parted ways.
In Sydney I went to see an amazing dermatologist, Gayle Fischer, to see about my newly diagnosed Lichen Simplex and my ongoing pain. Gayle specialises in vulvovaginal skin diseases. Instead of seeing what wasn’t there, Gayle felt if I had LS it was mild. After asking me a few questions about my pain levels and symptoms she identified the pain as being of physical origin not brain misfires or skin irritants. And she referred me on to an equally amazing physio.
Liz Joyce was my first proper ray of sunshine. She’s not just a pelvic floor physio but pioneers a method of internal organ manipulation. I can honestly say the level of relief she bought me was nothing short of magic. But we realised the relief only ever lasted a few hours. After treating me for a few months Liz figured out my intestines were twisting in reaction to what I was eating. This twisting was putting pressure on my uterus and in turn twisting the nerve endings in my vaginal walls causing the vulva pain. I got angry and told her I’d been tested for every allergy under the sun and stopped eating every food imaginable to no effect. She suggested I go to a food-chemical dietitian attached to the Royal Prince Alfred Hospital in Sydney.
What a revelation! I had no idea food “chemicals” could cause allergies. I got online and found a North Shore Dietitian who specialised in food chemicals. She mis-diagnosed me as Salicylate intolerant.
I feel the need to defend this dietitian even though the misdiagnosis caused me three years of continuing pain. By the time I saw her my food problems had evolved to the point that I could barely walk from the pain I was in. Every small move was agony. I suspect that going on the extremely limited Salicylate diet eased some of my symptoms by dint of removing many foods from my plate. And the RPAH Elimination diet did not at that time actually cover the food chemicals I AM allergic to (FODMAPs). Something I was not to find out for 3 more years.
But I mistakenly believed the diagnosis was correct because with Salicylate there is an expectation of discomfort with all foods ingested. I was now managing my pain by restricting my diet to the lowest salicylate foods. A list of about 20 edible items that still caused me pain on a daily basis.
Around about now I was 10 years into trying to solve my gynecological pains and heavy periods. I’ve had a series of mis-diagnosis, shrugged shoulders, painful wrong treatments, and being repeatedly told by GP’s, Gynos and Naturopaths that it may all just be in my head. My food allergies are only part of the equations so I was still seeking answers and doing my own research. I was on a forum for vulva pain (www.vulvodyniasupport.forumotion.net) when I read the word Endometriosis for the first time. I looked up everything I can find on it. I’m terrified because it sounds like an awful disease… and it sounds like exactly what I live with.
My GP and I are no longer on good terms. I had asked her for a bunch of blood tests requested by a naturopath I was seeing. She yelled at me for 5 minutes about how she was sick of people like me trying to self diagnose, going to non-medical professionals when I should trust modern medicine and qualified Doctors.
Trust the people who repeatedly told me it was all in my head? Who’d told me there was nothing more to be done? I left my GPs office feeling humiliated and more than a little spanked for my failure to “trust” modern medicine. I also left without the tests I requested. She refused to do them. Looking back I like to think she was having a bad week. People self diagnosing off the internet must drive doctors nuts.
However as a consequence of my GP’s tirade I was too chicken to ask for a referral. So I decided to refer myself to the best endometriosis specialist I could find online.
I was nervous the day I saw her. I was SO sure I had Endo it felt like a foregone conclusion. The Dr did a gentle pelvic exam. Then she got the “speculum of doom” and did an internal exam. This was incredibly painful (I cried) and left me bleeding for two weeks after. Once she’d completed my exam, taken my medical history and asked me about the state of my relationship and personal life (dire and stressful thank you) she very gently and kindly told me there was no way I had Endo. That it was likely a psychological issue and she felt I should make an appointment to talk to someone.
This was worse than my GP yelling at me. She was so kind and gentle I was left feeling like a complete fool. I left her office. Walked to a park over the road and cried for an hour.
In the proceeding weeks I decided she and every doctor I had ever talked to was right. It WAS all in my head. I was a terrible hypochondriac. I was a self centered, pathetic and revolting human being. I was nothing better than an attention seeker. I’d blown tens of thousands of dollars in service to my own mental illness. I should toughen up and live with my “pain”. Clearly it wasn’t lethal and I had a host of medical professionals backing this up.
Over the next two years I didn’t see a single doctor. No GP’s, Gynos, Dietitians, Naturopaths. Not one. I felt I didn’t deserve them. It was a waste of money and everyone’s time.
My partner and I moved back to Auckland. My health slowly got worse. I was now 30kg overweight. I couldn’t exercise as it caused too much pain. I was down to eating rice noodles with a stock cube most days as everything I ate caused me agony. Often around the time of my period my bowel movements caused me scream. By the end of two years I could barely walk up the street. I tore my calf muscle and ended up on crutches. Begrudgingly I saw a physio.
The remedial pelvic exercises he gave me to strengthen my walking muscles caused me to bleed vaginally. I stubbornly refused to believe this was a problem. Any GP I went to would just tell me it’s all in my head right? I figured the exercises were just too hard for unfit me! (I’m sure you can appreciate my self delusion here). I went to a great pelvic floor physio called Jill Wood to get “easier” exercises. She told me she thought I might have Endometriosis. I laughed and told her I’d already seen a specialist. I was just unfit thank you.
By now I was in so much pain I spent most of my non-working hours on a couch with a hot water bottle and pain killers. I had a persistently recurring deep ache in my right hip. Walking hurt, sitting hurt, eating hurt, I was tired all the time and I was horribly embarrassed about my weight. I could now hold my own stomach in my lap like a basketball. Look out modeling world here I come!
Finally I decided to “hedge” and treat the “least” of my symptoms by seeing another food chemical specialist. I wanted to know why my food intolerance was deteriorating so badly.
Anna Richards is an amazing Dietitian in Auckland. She figured out I’d been misdiagnosed and told me I was FODMAP intolerant. She also told me that women with FODMAP food intolerance often had PCOS or Endometriosis. I laughed and told her it wasn’t possible as I’d already seen a specialist for that. My problem was just food thank you very much.
I went home and tried the FODMAP diet. I was pleasantly surprised at the lessening of my symptoms. I was still in a lot of pain. But I was used to that. I figured this would be as good as it got.
Two weeks later I was screaming at the top of my lungs on the bathroom floor begging for help (or to die). When I could catch my breath between waves of pain that is. My terrified partner got me an ambulance to the hospital. The ER doctors kept me overnight. Did tests. I told them there was something terribly wrong with my digestion, something I ate caused this.
The ER doctors nodded their heads. Told me that twisted ovaries could cause this pain but it didn’t seem to be the case with me. “Oh and by the way” I seem to have a cyst on my ovary. My blood test indicates it “could” be cancer or endometriosis. How about I come back in three months to find out?
I was terribly confused. I had no idea what caused all that pain. But coincidentally I had a cyst on my ovary? Big deal! It certainly couldn’t be Endo. I’d been told I didn’t have it. Still the experience was scary and “could” be cancer. So I put on some emotional armor and found a Gynecologist with experience in cancer, cysts and endo.
A week later Dr Hii (also in Auckland) had me booked in for a laparoscopy. She told me she was 99% positive I had a chocolate endometrial cyst on my right ovary which had burst and there was no doubt, based on my symptoms and history, I had Endometriosis. Because I’ve never been particularly maternal we decided placing an IUD to manage my Endo would be a smart move. Strangely I wasn’t surprised by all this. Just pissed at myself for being a self willed moron for two years.
I had a 3 hour surgery. Lost ¾ of my right ovary to a chocolate endometrial cyst, both of my ovaries were stuck to my abdomen wall by adhesions. I had endometrial adhesions removed from my intestines, which needed to be separated having been stuck together by the endo. My Gyno wasn’t sure she removed all the adhesions from my intestines. She says this is a hard and delicate job to do. They also found but left two uterine fibroids likely responsible for my heavy bleeding and placed an IUD to “manage” my endo. I’m told my Endometriosis is classified as “mild” (good lord)!
I’m turning 40 this year.
My rage, my devastation, my fury is beyond mere anger. It’s beyond tears. It’s not aimed at my maiming or illness. It’s 12 years of misery and mis-diagnosis. It’s the host of specialists who shrugged their shoulders. It’s the Gynecologists who never even mentioned the WORD Endometriosis. It’s the Psychologist who told me my relationship problems were my own fault for being frigid. It’s the Endometriosis specialist who finally, kindly, convinced me I was a hypochondriac. It’s the tens of thousands of dollars lost on specialists that just didn’t know.
It’s my high school health-ed class that taught me how to put a condom on a banana but never mentioned that one out of every ten of us would suffer debilitating period pain (and I went to an all girls school). It’s the fact that I had to self-educate to get a diagnosis. It’s the fact that my own diagnosis was right but experts convinced me I was wrong.
I ask myself why it’s not mandatory in the medical profession to be educated about Endometriosis? Imagine all the specialists I saw? GP’s, Gynos, Dermatologists, Physios, Dietitians. Alternative Medicine Practitioners. And only two frikin specialists in 12 YEARS said I might have Endometriosis? And sadly that was 11.5 years and a whole bunch of psychological damage too late for me to believe them. It took an exploding ovary to sell me on the idea.
For 12 years I’ve hated myself, hated my body, hated my genetics, hated my mind, my ethics, my intelligence, my femininity. I hate my own reflection not just for how I look but for who I thought I was. Even today, knowing I have Endo. I will put up with high levels of pain because I don’t want to be seen as a hypochondriac. My Gyno calls me “stoic”.
And I’m not alone in my suffering. My partner has suffered silently along with me. My physical ailments and inability to live a normal life have vastly damaged him also. The uncertainty of my sickness being real or imagined has caused us both deep angst. The fact that he still loves me, sees my soul first and still says I’m beautiful is a gift I don’t fail to cherish. I’m so sorry he’s had to suffer with me.
I’m now seven weeks out of surgery. Dr Hii and the team that helped me were amazing. I won’t lie to you. It HURT! The morphine afterwards made me sick to my stomach. And the IUD does NOT want to be in there. I’ve re-dubbed my nethers “The Angry Snatch”. Once home I found that the Gabapentin, Ponstan and Panadol did not help with the agonising uterine contractions the IUD was causing.
While flat on my back I read a pile books on Endo, Pelvic Floor Pain and Diet. I’ve watched the conference DVD put out by EndoActive (awesome work ladies!). I started looking at natural pain control as I didn’t like the packets of pain killers I was consuming. Much to my immense surprise Golden Tea (made from Ginger and Tumeric root) along with Magnesium Chloride Oil (rubbed on offending stomach) actually make a difference. Which got me thinking about diet.
After my search for answers I now believe that women with Endo are more Natures Children than Children of the Industrial Age. It seems our bodies are incapable of dealing with the chemical overload that modern living places on us. The fallout of which is inflammatory disease.
In combining the FODMAP diet with the Endo diet I’ve arrived at something quite similar to Paleo. I’ve also added in two days of fasting a week after reading about the health benefits of the 5:2 diet via Dr Michael Mosley. Fasting may sound hideous but after the first few weeks it’s really not bad (perhaps avoided when menstruating). If you’re curious I now have zero digestive pain for the first time in 12 years. My vulvadynia symptoms are also gone.
In the 7 weeks since surgery I’ve only been able to exercise for the last 3. Yet in that time (flat on my back on the couch) I’ve lost the first 8kg of what I hope will be many to come.
Three weeks ago I started walking again. When I made it to the top of my street I could hear Rocky music in my head and nearly did a little dance. I don’t think you can understand that joy unless you’ve lost your mobility and believed you’d never have it back 🙂
This week I started walking on a treadmill at the gym. My brain literally CAN NOT get over the surreal fact that I can swing my hips in a full range of motion without (major) pain or restriction. I’m not sure how long this will last. If and when the Endo will come back. But right now I’m happy and hopeful.
Finding the medical knowledge relating to Endometriosis is like chasing shipping containers floating in a dark ocean while blindfolded. Little bites of knowledge that sufferers need to tie together on their own. We are our own university. Our own test tubes. And being diagnosed is only half the battle.
I’m scared of my future. 10% of all women suffer from Endometriosis. Misinformation and lack of education about Endo are rampant even in the medical profession. And to date there is no prescribed cure dietary or medical. Although I see hints of hope for management and even prevention through diet that have not been sufficiently explored.
If we continue to suffer silently embarrassed by our symptoms why should anyone bother to help us? I can’t bear the thought of another young woman suffering needlessly for 12 years. That’s why I’ve decided to share. Well worth the key-strokes.