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.