What Women Don't Share About Crohn's
Last updated: October 2023
I am a huge advocate of speaking about my disease. Since being diagnosed in 2009, I have shared my high and low points, the several medications I have tried that have failed me, all of the tests I have endured, and details about partial colectomy.
However, the one aspect of my disease that I have kept private is that I also have vulvar Crohn's. Yes, my Crohn's has spread outside the typical GI tract and traveled to a nearby location that went undiagnosed for almost a year.
Confused by my vulvar Crohn's symptoms
The first question that comes to mind is probably, "How did you know you had vulvar Crohn's?" And the answer is probably similar to what many have heard before getting diagnosed with Crohn's disease – it took visits to many doctors, several misdiagnoses, and almost 2 years of suffering before I was given a proper diagnosis. At first I blamed the soap I was using, then my laundry detergent.
I began to think it was the warm weather during the summer, only to discover that the pain, burning, and itching didn't subside in the fall. Attending a spinning class was out of the question, as anything that came near my lady parts was off limits (which included tampons and the like).
My gynecologist blamed it on "irritation" and sent me to another OB-GYN who had more experience in the vaginitis area. He diagnosed me with lichen sclerosis (another fun autoimmune disease) and despite seeing some improvement with the steroid cream I was prescribed, my relief stopped there.
Getting a biopsy
Finally, I was seen at the Vaginitis Center of Drexel Hospital where I was given steroid shots (yes, as painful as you can imagine) and prescribed an oral nerve block to ease the pain. I had only seen slight improvement and the medication was making me extremely drowsy, so I opted for a vestibulectomy (which involves surgically removing the painful tissue) in May 2016, during which my doctor took a few biopsies of the affected area.
A few weeks after surgery, I received a call from my doctor with the biopsy results and I will never forget the serious tone of his voice. He said, "We got the biopsies back, and it is quite interesting." I held by breath because no one wants to hear the word "interesting" about a biopsy report. He said that the biopsy showed granuloma (inflammation) which is indicative of Crohn's.
I was in disbelief. How could my Crohn's disease have traveled? How was I in remission, yet still experiencing pain? Why wasn't my medication working?
Treating my vulvar symptoms with Crohn's medications
We decided that the best course of action was to talk with my GI and start a new medication, Stelara, that was more systemic than the Entyvio I was currently taking. As most of you know, it takes a while for a biologic to be at a therapeutic level, so I was on both Entyvio and Stelara simultaneously for a few months. Jumping hoops for insurance approval and being on 2 immunosuppressants was not ideal, however, I saw improvement and was happy to give myself injections every 8 weeks rather than doing infusions.
Believe it or not, that is not where my story ends. I continued to have some vaginal pain, despite my ulcers going away and finally not feeling like I had been sitting over an open flame. I then had a pudendal nerve block in 2017 which finally took the last bit of pain away.
We need to talk about Crohn's disease and gynecological problems
Despite all of my treatment options, failures, and disputes with my insurance company, the most difficult part of all of this was not talking about it. I didn't feel comfortable sharing this information with my family or friends. I also didn't want to give the true reason I was missing work, and saying I could not be intimate with my boyfriend (now husband) was embarrassing and too personal, which is funny considering I have lived with a "pooping disease" for 9 years.
I wish more women could open up about this part of the disease, as I am sure I could have found more answers sooner than my doctors provided and would have known that I wasn't alone on this journey. Yes it is personal, and yes it is something that I still hold closely and hardly talk about, but I am hoping that by shedding a little light on this subject, it can help the many other women who could be suffering in silence today.
It gets better
And to those of you who are suffering, it gets better. I have had 3 children between 2019–2023, all via C-section so as to not disrupt anything or throw me into a flare. I know that it can get irritated and inflamed at a moment's notice, but I try not to focus on the what ifs and enjoy my family and the health that I have. And I wish you the best, too!
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