The Many Faces of Endometriosis: Stefanie's Journey to Diagnosis
By Stefanie Valakas
I am one of the 1 in 10 Australian women who are diagnosed with endometriosis. Endometriosis is a chronic inflammatory condition of the reproductive system and other parts of the body where endometrium-like tissue grows outside the uterus in cysts, patches or lesions causing pain, heavy or painful periods or ovulation, pain with urination, defecation or sexual intercourse, bleeding during or after sexual intercourse and other common symptoms of fatigue, bloating and nausea.
Now, it wasn't a simple or easy path to being diagnosed but I wanted to walk you through my story and how I worked out that something wasn't right and that it could be endometriosis.
Please remember, this is not personal medical advice, please speak to your GP and health care team about your individual care needs.
I want to try and follow as much of a logical flow of events as possible, but if you know me, my conversations are full of tangents, so if I go off track - please forgive me!
To be completely honest, it is hard to know when my symptoms started.
I never had super painful or heavy periods as a teenager, I had a couple of bad episodes of vomiting with pain and cramps but literally once or twice. My periods started when I was 13 years old.
I had been to the GP as a teen a few times as my periods were quite irregular, they thought I had PCOS and was screened appropriately with an ultrasound and told it was all good and it takes a while to become regular, at this stage I was 16 nearly 17, so thought things would be pretty regular by now.
When I was about 19 years old and learning all about human physiology and embryology at University and at the peak of my acne breakouts, I decided to go on the oral contraceptive pill. So I took myself off to the GP once again, and got a script for the pill to help with my skin.
Things were going pretty smoothly until about a 9 months in, when I had a dance performance that I was in, I asked my GP whether I could "skip" my period using the pill as it would be easier to not have to deal with aunt flow whilst doing cartwheels. They said go on ahead, and so I did, but to no avail, my period showed up anyway, I was so confused! Isn't this meant to just WORK?!
I then just went back to normal the following months but the spotting would not STOP, weeks on end of spotting despite taking the active pill. My GP then changed my pill and things were fine again for another 3 or so years, before the same pattern would emerge again about 2 weeks before the sugar pill week, I would get "break through bleeding: that wouldn't stop until I finished all my sugar pills. With all this spotting, I became repeatedly iron deficient, which eventually required a quick iron infusion to help me feel human again.
It was about 3 years ago when things really escalated, and I was in bed in absolute AGONY (not on my period), in my R lower side, it was a Sunday so I called the nurse hotline and asked what I should do. They suspected appendicitis, and I should get to my GP ASAP, or go to emergency, I felt that emergency was a bit "overkill" and headed off to another GP the next morning.
This GP ordered another ultrasound to check for appendicitis and for any cysts around my ovaries that may be bursting, all was clear once again on the ultrasound, but old Wanda on my right side was causing 10/10 pain to the point of tears. This new GP said "you have R ovarian pain, with no known cause, come back next month if you're in pain again", I came back two days later, still in pain demanding that other aspects of my anatomy be investigated like my bowels and checking for kidney stones. I couldn't even think straight on my dietetic placements the pain was that horrendous, I was shocked it wasn't my appendix.
I got an abdominal X-ray done and it showed bad constipation, another confusing finding because I was going pretty regularly, nonetheless I started a course of laxatives after my GP giving me a line of questioning about my fibre and fluid intake, which at the time I found hilarious, but now realise is just being thorough! It was assumed my pain would go when my bowels were pretty much empty.
Whilst it definitely reduced the intensity of the pain, a dull constant ache remained which was definitely worse after a big meal!
I decided to go back to my regular GP and ask for a referral to a gastroenterologist, his guesses were perhaps I had a kind of inflammatory bowel disease like Crohn's disease or perhaps it was gynaecological in nature. The only way to find out is to do a colonoscopy. I got onto the public waitlist for a scope, which is where you take strong laxatives to evacuate your bowels and a camera is passed up your bum to see what's going on inside the bowel. I realised my symptoms had improved a lot once I finished my studies and decided to cancel the scope as I realised stress was a big trigger for my symptoms, but after they came back with a vengeance I got back onto the list.
So we are now in July 2018, I get the scope done and they find an ulcer in my terminal ileum, and for the non-anatomy buffs, this is the very end of the small intestine that joins up to the large intestine located on the R lower side, hence explaining the pain! They couldn't remove it or have any treatment but that was my answer! The rest of my symptoms were down to irritable bowel syndrome or IBS.
Great! No Crohn's disease, IBS and an ulcer I couldn't do anything about. I decided to start the low FODMAP diet to see if it could help me, I identified my food triggers and limit a few key foods (rather than lots of foods) that trigger symptoms for me.
I continued on my merry way, still experiencing the spotting with my period despite taking the pill. I found a new GP earlier this year and explained what was going on, symptoms were getting worse and more unusual things were happening. She took a new pap smear, and ran some tests, nothing out of the ordinary to explain what was happening.
We looked at the options and decided to try a higher oestrogen pill, within 2 months my skin was worse than ever and my mood was completely irrational, so I decided to stop it all together, and went back to discuss my options.
The best option we decided was an IUD, the Mirena, as it didn't contain any oestrogen, but rather a synthetic form of progesterone known as progestin and it lasts for 5 years - sounds good!
I was sent to family planning for a consult for Mirena insertion, I talked about my journey so far and what was happening and they flagged me for an urgent visit with their doctor. After seeing the doctor and doing a whole new range of tests and questions, I was sent to a gynaecologist for further testing.
This is when I started to really think about endometriosis, it had been a question I had posed to one of my GPs years ago. Could this be endometriosis and the pill is masking the symptoms? The answer I got was "No, you'd have painful periods despite that and you'd definitely KNOW if you had endo". I trusted her opinion and dismissed it.
I thought to myself, my ultrasounds are always clear having 4 done since a teenager including a recent one, my X-ray/CT scans are clear, my colonoscopy was basically clear, there's only one more place to look, directly in my abdomen between all my organs to see if they can find the source of the pain.
Off the pill, my periods were what I thought were heavy, I was told they weren't that heavy, but here I was leaking everywhere I planted my butt on day 1 of my period and I noticed a definite increase in period pains compared to being on the pill, I thought to myself that's normal, right? To be expected. Each month got a little bit worse, with my bowels going funky the days leading up to it. Again, I thought, normal, loads of my clients complain about these symptoms, right?
I was not in excruciating debilitating pain, I wasn't having to avoid work or uni due to my periods, I wasn't even needing to take pain relief for my period. But I continued to have sharp pains between cycles, erratic bowels and other symptoms consistent with endometriosis, but they were so INCONSISTENT, it was difficult to prove my case.
I got to the gynaecologist and worked up the courage and asked, do you think I should get a laparoscopy done? Do you think all these symptoms could be endometriosis?
He was happy to do it, but not sure even he was convinced I would be a candidate for endometriosis.
I took the time to think about whether I wanted to do the surgery, the cost, the time off work as a business owner is a big hit, potentially finding nothing, creating scar tissue if nothing is there which could affect my fertility, the thoughts just ran on a loop.
I went into research mode, how many laparoscopies didn't find anything, only 30%, okay that's a good start. I asked colleagues and friends, and even clients how they found the surgery and recovery experience. Could I just be thinking I have something because I help women with this condition and am just experiencing a confirmation bias like we do with zodiac signs?
It was a particular week I had in clinic that made my mind up once and for all, a string of women all diagnosed with endometriosis with laparoscopic surgery who had symptoms like me, not the intense painful periods associated with the endo diagnosis, but something that was less obvious. I sat there and heard the stories of these women, and thought holy crap, this is me, I need to get this sorted out.
Like my boyfriend said, I wasn't going to cope with not knowing, so I might as well find out once and for all!
It probably took 3 years to get to a diagnosis and have my endometriosis removed. I woke up from surgery oddly calm (I am a cryer people!) and felt weirdly lighter, I could hear the nurses saying I had five incision sites and a catheter in, which meant they definitely found something because the surgeon told me the standard was 4 incisions.
I waited for the doctor to come and see me, and he confirmed I had endometriosis and it was all removed, and it was quite extensive. I cried, tears of joy. He asked if I was upset, I simply told him, I feel so validated, that I am not crazy, that I didn't make this up.
I don't know how many different medical professionals and doctors I saw over the years complaining of different issues and this was never even mentioned, it was through my own education and awareness that I put the pieces of the puzzle together and proposed it to my medical team, who I am so grateful listened.
We know the average is 7-12 years before women are diagnosed with endometriosis. A condition that loses women their jobs, relationships, with no cure - not even surgery or even a hysterectomy can "cure" endo. There are management strategies ranging from natural therapies such as acupuncture, chinese medicine, diet, pelvic floor physiotherapy to hormone treatments to pain management medications and strategies to of course, surgery. But for 40-80% of women the pains will be back within a few years of surgery, meaning multiple surgeries are likely to lie ahead in my future.
A condition that is more than just heavy and painful periods but is chronic in nature affecting so many different aspects of function. Recent evidence suggests an increase risk of other chronic conditions which are autoimmune in nature such as rheumatoid arthritis, inflammatory bowel disease, coeliac disease, lupus and multiple sclerosis.
Despite my journey, I am SO grateful at the age of 24 years old, I have been diagnosed, many women do not find out until they are trying to conceive and are struggling. 50% of women presenting for fertility help have endometriosis.
There are steps being taken with amazing organisations like QENDO, who are advocating for the implementation of the National Action Plan for Endometriosis, a disease that costs women and society $30,000 per year per sufferer.
I am not sharing this for pity, or sympathy, but for awareness, I study this stuff for my clients daily, have a science degree, I see these women all the time, hear their stories and even then I doubted what was happening in my body despite being so in tune with it usually. I almost feel like a fraud, hearing the stories of immense pain women go through and not having the same experience, but I wanted to bust the myth that you have to be in agony to have endometriosis, this is true for some, but not all women.
Stefanie is an accredited practicing dietician, nutritionist and director of her business The Dietologist. You can follow her on Instagram here and check out her website thedietologist.com.au
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