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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.

The pain of vulvar Crohn’s

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.

What are the symptoms of Crohn’s in/around the vulva?

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.

Why is vulvar Crohn’s 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 disease 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.

  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

  • fsvgdj
    2 months ago

    Hello

    Do the swelling and sores tend to come and go?

    I have swelling that comes and goes and small sores that are both itchy and painful that stay for a few weeks before they fade and new ones take their place.

    Also have a fistula.

    Have had four colonoscopies, but all show no chrons.

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

    Hi @fsvgdj,
    So sorry this is happening to you.

    While the swelling is common in vaginal Crohn’s, I’m not sure that the small sores you are referring to may be a part of that.

    Where in relation is your fistula? Is it near your lady parents?

    I’m obviously not a doctor, so I would hate to tell you the wrong thing. I think your best option would honestly be to see a second opinion with a GI that will take the time to explore ALL of these symptoms and go through why they could be showing up, or if it another diagnosis completely! I hate to see you suffer any longer than you have.

    Please let us know how things go for you. I’ll be thinking of you.
    Kelly, IBD Team Member

  • LadyJane
    8 months ago

    Hello,

    New to this forum. I have a 35+yr history w IBD. Complicated by many surgeries & no definitive diagnosis, even after removing my colon ( I’ve had an internal pouch since the 90’s) and 4 surgeries after for small bowel blockages & many hospital & emerg visits over the yrs; the biopsies remain inconclusive. Possibly fibrotic Crohn’s as I also do not show the inflammatory properties in my bloodwork. I have malabsorption following the latest surgery in 2016 for a foot long stricture the size of a pencil & it’s left me chronically dehydrated running to the BR 8-12 x/day so I have had a Picc line for 3 yrs now. I hydrate every day. I’m not in agonizing abdominal pain at the moment, I’m functional & actually managing to live life & stay out of emerg!
    With the diarrhea I have anal fissures, they get sore but anti inflammatory/corticosteroid creams w lidocaine deal w that when they get bad but this new blister like sore & knife like tear beside it on the perineal vulva area is very sore!! Yikes hurts to void.
    I thought maybe another form of fissure and then this info popped up on a search. It looks like the pics so I started reading about this. I’ve had the knife like cuts before but not the sore. Never knew it could be actual Crohn’s ulcers or sores on the outside like that. After ruling out many other possibilities w my GP, I’m being sent to the surgeon for biopsies.

    Anyone have suggestions of how to advocate for myself so I’m not being sent from the GI office to Gyne & so on if its inconclusive again. I have a feeling I will be guiding them. Obviously the topical is not enough. Treatment suggestions? Or things that have worked for any of you others dealing w this.
    My life is not normal, but I was doing ok. Now just a bit frustrated w this new issue & all the ointments!!

    ~LjK

  • thedancingcrohnie moderator
    1 year 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
    2 years 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
    1 year 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
    2 years 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
    1 year 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
    2 years 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
    1 year 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
    2 years 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
    1 year ago

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

    Hoping you are well!
    Kelly

  • judys1967
    12 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
    2 years 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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