The Knowing And Not Knowing Of It All
Updated: Nov 25, 2025
I have endometriosis. I didn't always know. But I knew something was off.
I always had painful periods. I have had horrible cramps, horrible draining cycles, and later, experienced multiple miscarriages. Before I solved the riddle of my reproductive body, I was told by my ObGyn that I 'might' have adenomysosis but that there was no way to confirm that without a hysterectomy and a biopsy afterwards. This was back in 2008. I was told I didn't have endometriosis after an exploratory laparoscopy that same year. At the time I was relieved and didn't think very much of these words, because I received a Crohn's diagnosis that same year, but I baffled my gastroenterologists because their treatments worked on my Crohn's ulcers, so why was there continued monthly flaring pain in the same lower right quad areas? I didn't tie it to anything more than what must be the 'normal' and horrendous cramping and bleeding I experienced every month.
More than ten years later, my husband did.
"What if it's endometriosis?" He asked. He read out all the symptoms as if he was checking them off for me - abdominal and pelvic pain, fatigue, pain during intercourse, pain during or after bowel movements..." We decided to call our ObGyn and enquire but I didn't get the reaction I was hoping for at first.
"No, It's highly unlikely. It's probably just your Crohn's acting up."
We had a clean colonoscopy, my Crohn's in remission, and a suggestion that I might be having some issues with chronic pain from my GI that pushed my usually calm husband over the edge.
"No. It's not her Crohn's. I have watched her every single month for years. It's her period. It's cyclical. I know it's endo. She is in bed for almost 2 weeks each month. It's got to stop. We need to do something." I had never seem him so fired up.
To his credit, our ObGyn, who had seen me through my losses, and the birth of both children, stayed open to listening. "I don't think you have it but I can prescribe a medication that may help... the only way to confirm is laparoscopy and that could be a year long wait..."
We weren't daunted and I added my name to the surgery waitlist. A few months later there was a cancellation and I was fit in for laparoscopy and excision. They found endometriosis. Apparently there weren't too many implants. My follow up, which I thought would be enlightening and helpful for a path forward was a little anti-climactic and weird.
"So there wasn't much there so that's good."Said my ObGyn.
"Ok...What happens now? What happens if it comes back?"
"Well, you're done having kids anyways..."
"Um.."
I didn't know what that meant. I realized right then and there that there were still doctors, even good ones that were confusing endometriosis with 'something reproductive that interferes with fertility' instead of 'something systemic that drastically alters your quality of life at every age.'
I knew that I could go back to this doctor, but I hoped that my symptoms wouldn't return. But they did, in the same place, about a year later.
I didn't know if it was back, but I also did know. I knew. And just as the pain was back in the same area again, yet again I had gone for a colonoscopy and yet again my GI had said everything looked good - my Crohn's was still in remission... maybe it was IBS and chronic pain issues. I knew there was something there, and I knew I needed more support this time. I was lucky my GP listened. I was referred to a woman's gynecology program that was more extensive - it included mindfulness groups for endometriosis, pelvic floor therapy referrals... I felt seen. When I talked about my previous surgeries and the resurgence of my symptoms this time, I was listened to in a different capacity.
This support along with a pelvic MRI (my first one ever) that confirmed adenomyosis in my uterus is what led to my total hysterectomy with unilateral salpingo oophorectomy and appendectomy in 2024. Aside from the adenomyosis, they didn't see any endometriosis on the imaging. None. That terrified me. What if there was none? Leading up to the surgery, I was in quite the flare - my bowels (that same lower right quad area) were causing havoc and even my bladder was getting in on the fun but I was treated with respect and dignity. "Oh yeah, endo goes hand in hand with bladder inflammation...interstitial cystitis is very common," said one of the doctors when I was at the hospital for a few days. I was in awe of how informed this entire program was and how empathetic the whole team was.
When the surgeon and her team finally went in, they found endometriosis on my bowels and rectum, on my appendix (hence the appendectomy), up my ureter, gluing my right ovary to my body's inner wall - "it was a mess in there" my surgeon said, nodding in her comforting and lovely way, and that made me feel vindicated and relieved that after all these years, I wasn't wrong, or wasting time, or losing my mind or somehow rechanneling chronic pain issues to my pelvic region. Regardless of if the endo had grown back since 2022's excision, or if the implants were tricky and somehow missed in the previous surgery, I found myself wishing that imaging was more reliable - that women were used as the go-to for developing CT and MRI visibility. 'If they could have just seen it in the first place', I thought. My esteem had definitely taken a blow through this multiple excision process.
The knowing something is wrong inside your body and having others - be it specialists, other doctors, family and friends - tell you 'you're fine' or 'that's normal' for so many years had etched away inside me beyond incidental gaslighting. But it was ok because the constant pain 'with no source' had a source. Multiple sources. I felt grateful for the findings, again. And while I liked feeling good after my 2022 surgery until the endo crept back, I adored feeling good after this major 2024 surgery which took quite a bit of recovery and patience but was so worth the wait.
My energy surged. My pain was gone. My mobility was at its peak. I still had IBS that flared and monthly prostaglandins that caused pain in the healing areas during chemical periods especially during healing months, but this was explained to me and I was ready for it. I used mindfulness, and movement to deal with this. It seemed easy. I could actually take the stairs! I could even deal with the initially pendulous hot flashes and mood swings that came with losing an ovary. It had also been explained to me that a hysterectomy didn't fully guarantee that my endo would disappear completely but that they had shaved down and removed all my implants on my bowels, and left one on my rectum that couldn't be removed. I was fine with that. I was told that my one left ovary would prevent me from going into menopause, naturally. Again, I was happy with all the support. The quality of my life was so different.
And then after feeling great for almost a year and not even thinking about my mobility something downshifted.
A lower right quad pain came back.
I knew but I didn't know. I didn't want to know.
So I waited. I waited, because it can't come back, right? They took it all. I feel great and I'm still mobile and I'm finally used to my declined state of 'not-quite-menopause/one-ovary' hormones. So it can't be back.
Maybe it's not.
But then, my migraines would spike brutally, the stabbing pain would flood my gut, radiate down my groin and down the inside of my right leg - an eerie echo of the past. 'It's just those prostaglandins...It's my imagination..it's Crohn's...my connective tissue disease or something...I'm out of shape..'. My heating pad started making more and more appearances until it lay out on the bed every night, then every day. Soon I was taking personal days.
My lower right quad pain became a fixture. It interfered with my eating. It exacerbated my IBS, twisted my gut, woke me at night, covering me in sweat. A colonoscopy said everything was fine, but that I should look into managing my chronic pain. No surprises here. We were right on schedule. Still I denied that it was happening. It couldn't be. Could it? Please no.
Then 3 months ago the pain heated up sharply in a kind of monster cycle which used to happen to me pre-hysterectomy. This time the burn was on my bladder, the flare breaking through 2 weeks to as long as it wanted. Together with low back pain and bowel pain it landed me in bed. I was treated with antibiotics, with clear urine culture and clear blood, but passing what looking like endometrial tissue. The pain was excruciating. I was grateful that it was temporary and I went back to my children and work and laughter and daily life hoping it was a fluke. Doctor's notes were written and collected for my upcoming follow-up with the endometriosis surgeon. In fact, much to my chagrin, whispers of 'endometriosis' were starting again, and when exactly 3 months later I continued to pass tissue in my urine again, and the same flare symptoms knocked me in bed for almost a month, even more notes were written. An MRI with no contrast was ordered that actually caught a small endometriosis implant on my looping bowels. Even my chronic pain favouring GI said it was probably my endo, again. ER doctors echoed that I should be following up with my endo surgeon. I was reluctant, but felt like there must be a plan when I come to the empathetic specialists who had successfully treated me before.
But when I went back, it was different.
"Well it's likely not endometriosis. We excised it."
My mind froze. Okay... When I had a uterus, this was not the conversation at all. What now?
"You can try medication, if it is endometriosis, it will work. If it isn't, it won't. If you can tolerate it, we would keep you on it for about 2 years or so. In the mean time, we'll refer you to urology. Again, the bladder symptoms are not likely related to endometriosis."
I balked.
"Ok... I'm open to trying the medication no problem...If it will shut this down and it is endo I will take it - the pain of passing these whatever these things are is excruciating. Question for you, what if it works but I can't tolerate it? I can start at a low dose but I'm super sensitive to medications. Also, the last time I was here, I was told I could do the medication or not. Or that I could do both the medication and the surgery-" Why is this so different? Is it because this time I don't have a uterus? Did I do or say something wrong? Did I say something offensive? Did I imply that they left something inside me? Or didn't do something right? Am I the annoying patient that comes back and complains? My mind was racing.
"We won't go in to do a surgery on an implant so small." she said straight out.
"But last time, you saw no implants on the MRI. Now, with no contrast, that's the only one you can see so far... what if there's more?"
"Right but it might not even be endo. Even in the notes they say 'possibly' endometriosis. It might just be scarring..."
I stared ahead blankly. Every interaction while cordial, seemed like it was pushing me towards a calculated exit. I wasn't sure why, after my doctors had all encouraged me to connect, but it was very apparent that the enthusiastic embrace I had once received as a patient had long since worn away.
I shook myself off. Okay. I have Crohn's, and connective tissue disease. I don't need extra scarring internally. Avoiding a surgery is not bad, I can absolutely get behind that. Just not avoiding a discussion around it as a vital patient option. I would also love to discuss the potential scarring that was left behind as a result of this last surgery. But it seems I have been deftly corralled past that point until my next appointment. Okay. I am happy with a referral to a urologist. I'm confused about the sudden pivot that bladder has no co-morbidity to endometriosis, but I'll nod for now. I am extremely nervous but totally open to try GnRH antagonists. Especially after having been in the stroke/neuro ward for my hemiplegic migraines and being monitored extremely closely by my neurologist. But in the end I hold my breath for an impressively long time, smiling at both the kind surgeon and her fellow. And I realize none of this is it either.
When I was healing post-surgery and was running into bowel issues the first things I was asked was what things I had done to help my pain. I was asked about my pelvic floor. I was asked about my mental health. There was a holistic approach, and as in the early days, it was impossible to not get the idea - from this program at least - that endometriosis was systemic, not just a reproductive disease.
This time, without my uterus, I hadn't been asked how my overall health was, or even what medications I was taking. I hadn't been asked if I had done any pelvic floor therapy. I hadn't been asked if I was interested in doing another mindfulness group. Did they stop offering it? Did they lose out? Did they stop caring? Or did they stop believing? I hope not. Mostly I hoped that I was not simply experiencing the hard border of hospital interaction that research and funding offered, where hysterectomies were the ultimate answer, under two years was too soon to come back; where not having a uterus and being on the cusp of menopause disqualified my opinion. I don't want to believe that my quality of life has an expiration date on it. No one does. Still...
I hope that it was a bad day, a busy day, a misunderstanding, lost footing, a crossed wire.
I hope that I'm not right.
I hope that in the end the tremendous program with great resources for gynecological issues and reproductive health, would still treat every age the same. That women of "well you're done having kids anyways" age, or those without a uterus are not treated differently, even if they go back with endometriosis questions, pain, surgical hope, or implants back on their bowels.
What happens next? I don't actually know. Maybe they're right. Maybe it's not endo. Maybe I am right. Either way I know I will need compassion and support. My body knows the cycles it knows, so for now I aim to stay in the present, love, nurture and equip myself and my beautiful family and live my life as best I can.
I do know that I will continue to ask my questions, and fight for early specialist dates, and advocate, and I know that I deserve a life where I am not in pain.
Because quality of life is for every age.
And that, like endo, is not just in my head.
PS. Yale University published a fantastic article about endometriosis as a systemic disease.
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