Crohn’s Disease of the Vulva

In the last few articles (What Women Should Know About Living with IBD, and Crohn’s Disease in Your Where?), we’ve talked about the complications that the female reproductive system can endure, such as vulvar inflammation. In this article, we’ll dig a little deeper into how Crohn’s can manifest in the vulva, how to identify symptoms, and how it can be diagnosed. It’s not talked about enough, and far too many women suffer in silence, not knowing where they can find support.

Crohn’s disease of the vulva can be very painful.

It can be extremely hard to diagnose and additionally, hard to treat. Often, some of these complications can be misdiagnosed due to symptoms presenting without bowel issues or problems. My care team involves a high-risk OBGYN and a Urologist as well as my most important team member, my GI.

But there are some things that GI’s might not specialize in, like vulvar Crohn’s, that may require multiple team members. This will ensure they are providing the best care for patients who struggle with vaginal symptoms.

So what are the symptoms and what can exactly be defined at “Vulvar Crohn’s?”

Swelling of the labia, ulcers in/around the vulva and topical lesions may be some of your first clues. Painful swelling, bumps, and ulcers can become a very serious issue and in some cases, surgery might be necessary if the patient fails different courses of antibiotics and immunosuppressants.

So why is it so hard to diagnose?

First, there is a stigma surrounding these symptoms and many women are embarrassed to deal with these issues. Sex is impacted, there is a lot of pain involved and if you’ve ever had a fistula, you know the pain an open wound or impacted wound can bring. Unfortunately, some of these abscesses and other symptoms can appear like an STD. Many gynecologists will screen for a  sexually transmitted diseases to rule it out, especially if they’re unaware of your Crohn’s. Some doctors may use a pelvic MRI to help determine the specific diagnosis in addition to finding the right course of treatment.

Again, this is why it’s so important to be completely open and honest regarding your sexual health, including any pain or symptoms you may have. The worst thing you can do is ignore the issue, as it may become incredibly painful, infected and even result in an abscess requiring surgery.

What types of complications are observed in the vulva with this type of Crohn’s?

Edema or swelling of the vulva may occur. Ulcers may also be present. Some ulcers may be completely asymptomatic, with no pain at all, but can wreak havoc long-term. Some  may actually appear as small knife-like cuts in the perianal and vulvar regions, or in the folds of the vagina. The most common symptom of vulvar Crohn’s is slow-to-heal labial swelling on only one side. Some ulcers or abscesses may require drainage if they do not respond to traditional therapy.

Have you had experiences with vulvar inflammatory bowel disease? How did it affect your physical or mental health?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Andreani, S. M., et al. "Crohn's disease of the vulva." International Journal of Surgery 8.1 (2010): 2-5.
  2. Feller, Edward R., Silvana Ribaudo, and Neil D. Jackson. "Gynecologic aspects of Crohn's disease." American family physician 64.10 (2001). 
  3. Graham, Deborah B., Jayme R. Tishon, and Marie L. Borum. "An evaluation of vaginal symptoms in women with Crohn’s disease." Digestive diseases and sciences 53.3 (2008): 765-766.

Comments

View Comments (11)
  • thedancingcrohnie moderator
    5 months ago

    Thank you for sharing this! Such an important read for women who have Crohn’s. My GI never disclosed this information with me.

    Always dancing,
    Elizabeth (team member)

  • ginamm
    1 year ago

    i was diagnose with crohn’s/ behcet’s disease in 2007, i suffered with vaginal sores several years before i was diagnosed along with occasional fever! and yes it was embarrassing and painful i didn’t know why this was happening to me! i had a gyno tell me i had herpes and to douche and gave me antibiotics without even running any test. made me feel like i was dirty and bad! it didn’t help. i found another doctor and i went through about 2 tissue biopsies and was tested for all types of std’s and aids! all negative, i was given ladicain ointment to try and make urination easier! then my immune system started to attack all parts of my body and was being treated with steroids and it cleared it right up i also had a lot of sores in my mouth! doctor told me that was how they knew fore sure it was not a std because steroids would of aggravated the sores not clear it up. antibiotics don’t work because the sores are from a inflammatory disease not a viral infection.

  • Kelly C (#purpleproject) moderator author
    4 months ago

    This made me feel for you. I’ve been there. Uninformed doctors with this type of stuff can be extremely dangerous for us – and how are we to know, if we’ve never dealt with these symptoms!?

    Kelly

  • Sickforever
    1 year ago

    Thank you so much for posting this ! Yes I have experienced this and it is so painful and embarrassing. I never knew that this was caused by my Crohn’s disease, so that means my doctor’s didn’t either. Imagine that !!! Thank you so much for this information, that’s why I love this site. I have learned so much from other’s.

  • Kelly C (#purpleproject) moderator author
    4 months ago

    Thank you for your comment! It’s so important that this is talked about as openly to get rid of the stigma of going through it alone! Thinking of you!
    Kelly

  • pj3
    1 year ago

    oh my i just read this article. i have been dealing with this for years! i have always felt there was a correlation with the 2! i am on an antibiotic at the moment. but how do u get ur doctors to listen to u?? this article helped me feel like i am not crazy. i have learned so much about my disease from this forum!!

  • Kelly C (#purpleproject) moderator author
    4 months ago

    I was lucky enough to find a very smart OBGYN that has treated my type of IBD in the past. I am in the process of finding a new one and just hope that they are open to hearing past experiences and what has worked for me in the past.

    It’s all about building a new relationship. And this can be time-consuming for so many reasons!
    Kelly

  • judys1967
    1 year ago

    I have been having itchiness, swelling, pain, etc for 2 years. My gyno has tried antibiotics, ointments, estrogen, and nothing works. Thank you for this article! I am taking it to her in 2 weeks when I go back to see her!

  • Kelly C (#purpleproject) moderator author
    4 months ago

    Have you tried anything since writing this comment that has helped Judy??

    Hoping you are well!
    Kelly

  • judys1967
    4 months ago

    It is gone now. I found an OB/GYN who knew what she was doing. She put me on strong antibiotics, can’t remember the name.

  • nicholeMLT
    1 year ago

    Thank you so much for this post! I have had these symptoms, and I have read about vulvar involvement in some studies outside of the US. However, my OB/GYN, immunologist, and regular doctor did not believe me. They were convinced I had behcet’s, in addition to Crohn’s, instead. Now, we cannot definitively rule that out yet, but the only symptom I have shown that they keep pointing to is the vulvar involvement. It’s been incredibly frustrating. Do you have any other materials or links you can share? Thanks again!

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