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Why being diagnosed with endometriosis was one of the happiest days of my life

Thu 5th March, 2020


Every year, March is Endometriosis Awareness Month. Endometriosis is a common and painful condition that affects 1 in 10 Australian women – but more awareness and research is needed. Symptoms vary and can impact fertility, with it often affecting the reproductive organs but also, in some cases, the bowel and bladder.

This month, Tidings is focusing in on endometriosis: why it happens, how it happens, the impact it has on women and society, and what we can do about it.

You can find out more about endometriosis here, or read our extensive guide on it here.

Going in for my ​laparoscopy​ in January, I felt the familiar sinking feeling in my stomach. The procedure involved keyhole surgery, multiple small incisions, inflating my entire torso with gas, and then looking around at my insides with tiny cameras. All of this in some desperate attempt to confirm what I suspected – and what I hoped doctors would soon confirm: I have endometriosis.

“They’re not going to find anything,” I thought, trying to prepare myself for the moment when the doctor would enter after surgery and assure me, once again, that it was a ​good thing​ that they hadn’t found anything wrong with me.

After nine-and-a-half years of dealing with chronic pain following a 2010 appendectomy that left me with chronic nerve pain and IBS, I’ve had my fair share of these conversations.

I’ve had a hysteroscopy, two endoscopies, and two colonoscopies done over the years, along with a slew of scans, blood tests, ultrasounds, and various other medical tests. With a few very minor exceptions, the results from these tests have always been overwhelmingly positive: Nothing to see here! Isn’t that great?! Off you go!

Most of the time, I’d be discharged from hospital with nothing to show for it but the gaping hole in my bank account.

Last year, I moved back to Adelaide after five years in Sydney, during which time my pain had spread, evolved, and worsened significantly.

I visited over a dozen specialists, many of whom were supposed to be well-versed in women’s health and complex chronic pain problems. And yet, the pain persisted.

Before Sydney, before my pain worsened, and before I moved back home to Adelaide, I was younger and more willing to listen to any health professional that gave me advice. It was then that my gynaecologist had said in passing that we ​could​ do a laparoscopy to check for endometriosis. She told me she’d be “surprised” if they didn’t find any. However, with my nerve pain as it was, the potential for harm at the time seemed to outweigh any potential benefit, so we put it on the backburner and focused on my vulvodynia, the main cause of concern at the time.

Most of the time, I’d be discharged from hospital with nothing to show for it but the gaping hole in my bank account.

Over the years, I mentioned this comment to my specialists, and out of all of the health professionals I’d seen it was only a chiropractor who suggested that I follow it up and get the laparoscopy. She explained I should’ve made more progress in the time that I’d been seeing her. There was something else going on that she couldn’t figure out. It’s kind of ironic, given that over the years, I had many physios, doctors, an osteopath, and an acupuncturist all completely disregard the usefulness of chiropractors, a profession they tend not to take seriously.

Last year, I followed this up and approached my new gynaecologist – part of ​SA’s Pelvic Pain Network​ – stating on the very first form I filled out that I was looking for her to perform a laparoscopy for endometriosis and any other adhesions. She agreed, and by the end of the appointment, I was booked in.

On a sunny morning on January 13 I was admitted to hospital, anxious that this would all be for nothing. I was convinced that that they wouldn’t find anything and that I’d feel like a fool for even hoping that they’d find something. I wanted so desperately to have a reason for all of my pain and suffering, and I agonised over the possibility that there was actually no rhyme or reason for the sickness I had felt for such a long time. Thankfully, that’s not what happened.

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Today in #365daysofpain: Pain: idek tbh lmao Ways I was well: I feel FUCKING VINDICATED! This morning’s surgery proved that not only do I have #endometriosis, but according to my gynaecologist, it’s “quite severe”, stage three endo (of four). Although it’s quite significant, I’m just so thankful to FINALLY have any kind of definitive cause or contributing factor to the last NINE YEARS that I’ve spent in pain. So when I say I love this for me, I really do fucking love. This. For. Me. I was so, so worried that I was going to come out of this with no answers, no nothing, and I would be just so frustrated to have spent this time and money to have put my health and pain on the line again, to not see any kind of result. So, I’m happy in my sickness, I guess??? Ways I was sick: well I mean, the four keyhole cuts are a good start. My throat hurts from the tube they shoved down there while I was asleep. My neck and shoulders keep cramping, which happens as a result of keyhole surgery?! Because the cuts are small, they use gas to blow up your torso so they can see around inside, and idk why but that gas then creates neck and torso pain once they’re done and you’re back in one piece. According to my gyno, they excision surgery was quite successful, there are still a few gnarly bits that are fused to my rectum, which could explain why I’ve had such viscous lower back pain over the years, especially around my period. She left those bits because when I was signing the paperwork she remembered that I had “expressly told her not to puncture my bowel” lmao. So, she played it safe and we’re going to see how it goes now that I have a zoladex implant, which effectively puts me into chemical menopause. She’s hoping this will mean less pain and less #pmdd, which would be a huge improvement, and if not, then there are specialist surgeons she works with, who specifically do excision of endo on the bowels. So, we’ll see how it goes! I’m grateful that after NINE YEARS, I finally have one of the many answers I’ve been searching for. I’m also so extremely grateful for all the wonderful people who have sent well wishes and checked in today, over the past few days + over the years ♥️🙏🏻

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After waking up from surgery and being wheeled back to my room, my gynaecologist and surgeon came to visit me.

“There was tons of endo,” she said, telling me that I had “quite severe” stage three endometriosis.

I was elated. After years of searching for answers and only being given ​diagnoses of elimination like IBS and vulvodynia, I finally had concrete confirmation. It was nearly unbelievable, like a sudden rain shower in the middle of a 40 degree day, but it was happening all the same.

Now I knew I hadn’t been overreacting when I was in pain. I knew that my long pursuit hadn’t been in vain. I knew that I wasn’t stupid to keep searching.

Although it’s only one contributing factor to my chronic pain, it was there all along, just waiting for someone to find. It was overwhelming. I knew going in that if they didn’t find anything my pain would still be real and valid – my GP and gyno had both said as much to me, preparing me for the worst case scenario – but to have someone finally confirm that yes, there was a problem visible to others, was a moment I’ll never forget.

Doctors told me they had excised as much of the endometriosis as they could, leaving only some parts that were embedded deep into my bowel.

I needed these procedures – and sorry, reader, if this is too much information – because I was shitting blood.

While my case should be the exception to the rule, ​Endometriosis Australia​ reports that it takes most women between seven and ten years to be diagnosed with endometriosis, despite it being recognised as one of the ​20 most painful conditions​ to live with.

This delay is partially due to women and doctors normalising symptoms, and also due to a lack of awareness about what is and isn’t normal when it comes to menstrual health.

Recently I had a conversation with Jayashri Kulkarni, a Professor of Psychiatry at Monash University who works in women's mental health. While the topic of our conversation was pre-menstrual dysphoric disorder, one of her comments stuck out to me.

“There are different specialties and they won’t talk to each other,” she said, noting that it was always women who suffer when doctors don’t have a holistic approach to managing what the problem is.

Thinking about this, I recalled my last endoscopy and colonoscopy that had been performed by a gastroenterologist. I needed these procedures – and sorry, reader, if this is too much information – because I was shitting blood.

Although the gastroenterologist was aware of my long history with chronic pain, he simply looked at the results and said that he couldn’t see anything that was causing it.

Perhaps if he’d taken more time, or looked more closely at my medical history, it would’ve occurred to him that there was a ton of endometrial tissue all over my bowel, and that ​having blood in your stool is a symptom of endo​. But whatever! I’m not bitter!!!

Of course, this is all just one piece of the complex jigsaw puzzle that is my chronic pain.

I’m still in pain. I’m in pain as I write this! But for the first time in close to a decade, I ​know​ that my pain is real.

I know that I have endometriosis. I can hold the report that states as much whenever my anxiety tells me that I’m being dramatic, or lazy, or that I should be able to “just power through”.

I know that my illnesses and my pain would’ve been real whether they’d found endometriosis or not. My gynaecologist and GP said as much when I voiced my fears prior to the surgery.

But damn, it feels good to have an answer.


Resources (in order of appearance)

https://www.thewomens.org.au/health-information/periods/endometriosis/laparoscopy-and-endometriosis

https://www.adelaidepelvicpainnetwork.org/