Last spring, just when I had thought I had turned a corner and had many of my conditions better controlled, I developed a ton of crippling pelvic pain. Within a couple of days, I started bleeding a lot, which made no sense because I had been on hormones for years to stop my periods. Hormonal therapy was presented to me as a treatment option by Mayo Clinic’s gynecology team because I had many peritoneal inclusion cysts (scar tissue filled with fluid in my pelvis) that were wreaking havoc on my bladder before and after major surgeries done to remove my j-pouch. So, it was either hormonal suppression of ovulation or a hysterectomy at age 33. I chose hormonal therapy.
That scar tissue wreaked havoc on me until I had surgery in Pittsburgh in November 2021. With that surgery, many of the adhesions (scar tissue) had been cleaned out and I stopped having nearly as many small bowel obstructions or peritoneal inclusion cysts anymore. It was a miracle honestly after years of suffering from adhesive disease from so many abdominal and pelvic surgeries due to Crohn’s disease.
The Unfolding of a New Diagnosis
Since that surgery at UPMC, my care team decided we could bring down my dose of progesterone slowly. I technically shouldn’t be forming peritoneal inclusion cysts since much of the scar tissue had been cleared, I was told. I loved not having a period and not having to deal with the bloat, moods, migraines, and aggravated IBS/IBD symptoms anymore. But I also didn’t love being on high-dose hormones either. So I proceeded to slowly taper my dosing with my gynecologist’s guidance. By the end of 2022, I started spotting again, and by April 2023, I had a full-fledged period again after years of not having one.
It was messy and took me by shock. The pelvic pain was so intense that I knew something was really wrong. The issue quickly became an emergency and my gastroenterologist and gynecologist got involved. I asked them to speak and help me sort this out. They ordered an MR enterography to see what was going on — was it Crohn’s or was it something gynecological that was causing all the bleeding and the pain?
I advocated hard for pain control in the meantime. I had to use vaginal Valium/Baclofen as well as pelvic floor injections (lidocaine shots among others) and pelvic floor physical therapy for pain management. I did the best I could for the next month until I could have the MRE done.
I suspected it was peritoneal inclusion cysts or maybe an ovarian cyst causing the pain and bleeding. I hoped and prayed it wasn’t Crohn’s rearing its ugly head. What was found came as a total shock to me: endometrial lesions all over my pelvis…
My head was spinning. I couldn’t possibly have another diagnosis is the narrative I had told myself waiting for that MRE. Yet here I was now needing to accept that I have accumulated yet another diagnosis. This time it was endometriosis.
What is Endometriosis?
According to Mayo Clinic, endometriosis is a disorder in which tissue similar to the tissue that normally lines the inside of your uterus (the endometrium) is found outside the uterus, e.g., in the tissue lining the pelvis, on the bowel, on the fallopian tubes, on the ovaries, etc. This results in painful periods and heavy bleeding during each cycle.
Endometrial-like tissue growing outside the uterus unfortunately doesn’t shed during a menstrual cycle like healthy endometrial tissue inside the uterus does. This buildup of abnormal tissue outside the uterus can lead to inflammation, scarring and painful cysts. It can also lead to buildup of fibrous tissues between reproductive organs that causes them to adhere to one another. Endometriosis can often be a comorbid condition with IBD and IBS, and symptoms of both can mirror endometriosis, allowing endo or IBD/IBS to go undiagnosed.
Even though endometriosis had been suspected in me for years, I was told laparoscopic abdominal/pelvic surgery could really confirm it. But my colorectal surgeons in the past had never mentioned any visible endometrial lesions in my pelvis or on my bowels, so I thought I was in the clear.
So, What’s the Treatment?
Really, hormonal therapy, I was told. And when we started dropping the progesterone dose in mid 2022, the endometriosis began to rear its ugly head.
Interesting thing is, I’ve had horribly heavy periods and awful pelvic pain with nausea ever since I got my period at age 10. So, this diagnosis was literally missed for 29 years! And I suffered in so much pain until age 33 before I started hormonal therapy for the inclusion cysts, which was indirectly treating my endometriosis…
It has all been so mind-numbing and so hard to wrap my head around. Having been through so many new diagnoses before, I have been trying to focus my mind on treatment rather than allowing this to derail me emotionally.
Why Not Train Across Specialties?
But the reality is, none of this has been simple or easy to accept. I suffered for years without a diagnosis when there were good hormonal and surgical treatment options available. I was opened so many times for colorectal surgery when endometriosis could have been spotted and addressed. I really wish colorectal surgeons could be trained to find endometrioma and gynecological surgeons could be trained to spot IBD-related ulcerations, so these issues can be diagnosed more easily and more readily addressed.
For years, the focus has been so heavy on my Crohn’s and controlling it, that the thought of there being a comorbid diagnosis causing my pelvic pain and heavy bleeding and nausea flew right under the radar.
The Acceptance Process
While I feel relieved to have a diagnosis and am in the process of upping my progesterone dosing, I also feel shattered in so many ways. I ebb and flow through pelvic floor physical therapy and getting injections to the pelvic floor to manage the pain. But what still remains is the grief, something I’m still trying to work through in order to re-discover my equilibrium both physically and emotionally.
In the midst of all of this mayhem, I still managed to graduate from my MPH program at Mount Sinai this past June and host two wildly successful events for South Asian IBD Alliance (SAIA) at Digestive Disease Week (DDW) this past May. And I am trying to keep that front and center as I begin to accept yet another diagnosis.
So, own your Crohn’s, own your endometriosis, and know that you too can live a full life in spite of having multiple diagnoses. One step at a time, one breath at a time, one foot in front of the other because we’ve got this!
