This Is Endo
By Alice Ayling
This is Endo
I’m lying in bed, one heat pack held against my abdomen, the other behind my back. I’ve taken Ibuprofen and Panadeine Forte but neither have changed the pain. I’m crying. Frustrated. Exhausted. I’ve got Mum guilt because my husband has to take care of my two children while I can’t.
I’ve thrown up twice already today. My tummy is nauseous. The pain is so excruciating that my bowels and bladder are going haywire and I have to keep getting up to go to the toilet. I’m trying to be brave so my 3 year old doesn’t know I’m struggling.
My back is killing me. I have a towel underneath me in case of any leakage, which is inevitable. I’m wearing period undies underneath a massive maternity pad that will need changing every 30 minutes or so at this rate. If I had to guess, I’d say I’ve already lost a litre of period blood and it’s only Day 6. Yes - I still have several days of this hell left - often it lasts ten days or longer.
I just want it to end. This is not normal.
The problem is, this IS normal for me.
I’ve known that I have endometriosis since I was 15, when the severe pain and heavy periods really kicked off. Since my first period at 11 yrs old, the pain had become unbearable and I knew that my periods were different to my friends’, different to my sister’s.
By 18, I’ve tried everything I can think of, researched like crazy, and seen several gynaecologists with my Mum. I’ve been through humiliating moments at school and with friends, including ruining clothes and furniture with my heavy period blood leaking everywhere, and having to miss days of school or important social events.
A new gyno finally agrees to investigate with a laparoscopy. He says it is the only way to diagnose it.
He is rough, and shoves his pelvic ultrasound inside me even though I am nervous and scared. I’m still a virgin and no other man has seen that part of my body. I can tell that he thinks I’m a hysterical teenage girl.
After the surgery is complete and the gynaecologist is back for a follow up, he tells my Mum that he didn’t find any endometriosis, that the pathology was inconclusive. Mum asks him what else could be causing my issues, and he just says dismissively “I don’t know, but it’s not that..” I take that to mean that it must be in my head.
It’s not endometriosis.
Now I spend the next twelve years of my life assuming that I am overreacting to my symptoms. I see several doctors and gynaecologists in this time, but because it has been confirmed that I don’t have endometriosis, they can only treat the symptoms. One doctor recommends that I skip my periods using the pill, so that I can live a more normal life. So I do. I skip periods for almost two decades, only breaking every 6 months or so to let my body reset.
Over the twelve years since that first surgery I experience all kinds of crazy pain, including from a cyst on my ovary, a burst follicle, severe mid cycle pain (Mittelschmerz), and my left ovary gets stuck to other organs and stops ovulating.
Even though I’m skipping most periods, I start having period pain all the time. I end up in hospital on multiple occasions, with “suspected endometriosis” or “unexplained pelvic pain” as my discharge diagnosis. The hospital doctors don’t know what to do other than prescribe strong painkillers and send me home.
I start telling health professionals, colleagues and friends that I have endometriosis. It’s easier to explain why I’m in so much pain, and why I have to cancel plans or take sick days.
At the age of 31, my husband and I are married and start trying to have children. This means going off the pill. I’m terrified of what will happen, but I’m determined to get pregnant and have a family. We try for six months, and my periods are horrendous. I now have pain in my abdomen almost full time.
I’ve finally had enough and I’m exhausted, so I go and see a new female GP.
She listens to me and my whole story. She recommends that I don’t mess around any longer with doctors who can’t help me, and she refers me to an endometriosis expert and excision specialist in Brisbane: Dr Michael Wynn-Williams. She says that he’s the best of the best. I call and make an appointment.
On the day of my appointment, I take a page of handwritten notes and all of my medical documents - I’ve tried to think of all of my symptoms and past medical history, tests, doctors visits, anything at all. He asks me why I’m there and I explain that I believe that I have endometriosis and that I want a diagnosis. I read my full page of notes to him while he listens. Then he turns to me and says “yes, you have endometriosis. There is no doubt in my mind. Let’s book the surgery and remove it.”
I can’t explain to you that feeling...it’s indescribable relief.
He books in my surgery at a private hospital for the following month and I pay upfront because the public waiting list is over twelve months. I don’t care about the money at this point, I just want help.
Dr Wynn-Williams performs my surgery and visits me in hospital that afternoon. He tells me that he found a substantial amount of endometriosis all around my uterus and ovaries. He says I have some around my bowel but it’s too dangerous to remove without damaging my bowels. He shows me pictures of where the endo was and what he was removed.
He provides a formal diagnosis of Stage 3 Endometriosis (Moderate). He says that the endo has likely been there for a very long time, and that the first gynaecologist probably missed it, as many often do, especially if it’s not their area of expertise. I feel validated, finally.
He also says that the surgery might help me to fall pregnant now, because my body is finally free of most of the endo, and the hormonal changes could boost my fertility.
I’m 32 - and I have a diagnosis. It’s been 17 years of suffering from something that I can’t articulate. Now I can.
Endometriosis, Stage 3.
I fall pregnant within 3 months of the surgery, and give birth to a healthy baby boy in 2017.
I’m able to write “Endometriosis” on medical forms that ask for any existing conditions now.
I can explain to colleagues, friends and family why I need to take a day off, miss a social event or why I’m “not quite myself”.
I am now covered by private health for my endo, and for any future surgeries that may be required.
My condition helps to explain our fertility issues when we decide to try for a second child.
My egg reserves were dangerously low when I had an AMH blood test in 2019, and my fertility specialist tells me that it will be very hard to fall pregnant, and that it is too late to try IVF because there are not enough eggs left. I am premenopausal at the age of 36. My endo has destroyed my eggs. I am furious that doctors have never offered me this blood test before, because I would have frozen my eggs when I still could.
Despite the chances (and because I don’t give up easily!), we decide to try to get pregnant naturally anyway, and I book in for hormone injections and another endo surgery.
Three months after the most recent surgery (where my specialist removed a large amount of endo that had grown back), I fall pregnant with our baby girl. My specialist and GP are shocked, but are happy to be wrong. They say she must have come from one of the few viable eggs still left - she is a miracle, a medical marvel.
I am now 36 years old, with two beautiful children who make all of this suffering worthwhile.
I am back on the pill, and hoping to start skipping periods again. I’ve asked my obstetrician and gynaecologist about permanent solutions to my endo symptoms, including a hysterectomy, but they are reluctant to try until I’m at least 40 years old. Plus, it may not help anyway since there is no cure for endometriosis and it may continue to grow back for the rest of my life. They offer me a few different medications to try, including drugs that can help to slow the heaviness during my period, (no one has ever told me about this before!)
This latest period is my fourth since giving birth almost 5 months ago. After the birth of both of my children, my periods came back almost immediately, despite exclusive breastfeeding.
I’m anaemic and dizzy from all of the blood loss this month, and might require another iron infusion soon. My skin is paler than ever.
My weight is all over the place, and is so hard to control with the constant hormone changes my body goes through. I had just started running again to get my fitness back on track but I’ve had to stop during my period because it’s too painful.
I don’t really have a definitive cycle - I’ve had two periods within one week of each other, and I’ve also gone two months without one before. I have spent hours crouched on the ground screaming in pain. I once left a work Christmas party early because I had blood gushing down my leg under my cocktail dress. I only wear dark coloured underwear - I’ve never worn white pants. In fact, most of my clothes are dark colours out of habit now.
I keep all of my medical records in a display folder ready for any new healthcare providers. I have my “period kit” - a box that contains all of the supplies that I need during an endo flare up, including medications, natural remedies, heat packs, essential oils, a TENS machine, sanitary products and things that cheer me up. I’ve tried changing my diet, and I avoid things like alcohol that I know will make the symptoms worse. This is how I survive it.
I’m sure that I’ll need another surgery in the next few years, and possibly every few years for the rest of my life. Endometriosis grows back.
I have endo tissue on my bowels that cannot be removed, and will always cause bowel problems.
I will always have chronic abdominal pain.
There is no cure.
I try to stay positive. I have my gorgeous babies. I have a loving husband who has done countless late night chemist or hospital runs, has seen me through my worst moments, and brings me heat packs or chocolate when they're needed. I am lucky.
Thinking of all of the amazingly strong people suffering daily from this disease. You are warriors.