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 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.