Vaginal Crohns Disease

FL Kate, I have to say I've never heard of vaginal crohn's, as it's a gastro intestinal problem. I know people have rectal-vaginal
fistulas, but never the actual disease being in there. Could you possibly have a severe case of a yeast infection. This I do know,
when severe enough can cause the symptoms you describe. Mind you, this is only my opinion, someone else on here might
know more. Good luck

Welcome, and I wish that I could help you....hopefully someone will be along that can. Thanks for the article....it was very good!

I have never heard of this and that was an interesting article. I had PCOD many years ago and have heard of several women on the board with it; the article nods to a possible connection.
but mostly FL Kate, I want to say welcome and what a rough thing this must be for you. It sounds really painful; how are you doing? yp

Wow, this sounds exactly like what I have.  I just thought I had fistulizing Crohn's but this sounds more accurate to my symptoms and what I've been dealing with.

I have suffered "down there" for a long time and still have zero answers.

I have had Corhn's for some 43 years (small and large intestines- hemi colectomy 3 years ago), been on every drug including prednisone for 25 years, infliximab and methotrexate.

During the last 6 weeks I have seen various doctors - 3 G.P.'s and a Consultant Gynaecologist (currently President of Royal College of Gyaenocologists and an expert on vulval cancer). Was first diagnosed by a naive GP with a Bartholin's abscess and Thrush - given Canestan. I knew it was not a Bartholin's as I had a number of these in my 30's and 40's. Second diagnosis by different GP was Lichen Sclerosus. Last week I had a colposcopy and very painful biopsy of the vulva which required 5 stiches. Consultant believes it is metastates Crohn's. My gastro is now involved and he thinks the same. Both of them are fast tracking the histology of the biopsy specimens and I expect to hear the result next week.

Must say in all these 43 years, I have never heard of Crohn's disease of the vulva. I have had a number of complications of Crohn's which my gastro has treated "empirically" - I had to look that word up! - including erysipelas, leishmaniasis, Mondor's disease of the right breast after successful breast cancer, pancreatic insufficiency, etc. I'll post histology result when I get it - and what treatment is advised.

Hi Missprissie - oh dear, another doc who can't be bothered to try and research what is a very rare complication of Crohn's. My consultant gynae told me there are less than 60 reported cases worldwide. Reminds me of the old joke:

"What is the difference between God and a Doctor?  - Amswer: God doesn't think he is a doctor" - says it all.

Seriously, inflammation of the vulva is not a psychiatric condition or brought on by stress.  If you google "Vulva of the Crohn's" there are many scholarly articles on the condition.

One doesn't have to have active Crohn's of the intestines (small or large bowel) to have this non-infectious manifestation of inflammation of the vulva.  Perhaps it is time for you to change that doc - I know I would!

Take care,

Liz

My daughter was diagnoised with vulva crohns disease (granulomatis vulvitis)at 7 years old after another 2 years of noone knowing what she had. (She was dagnosed with crohns disease at 4 years, symptoms from the age of 2) Antibiotics creams, prednisole etc etc did not help, she was then put on infliximab infusions when it first became licenced for use on children. This completely reduced the swelling and sore dry redness surrounding the area.She has the infusions every eight weeks. How difficult life in school has been for her even with having a statement noone supported her condition, creating a very anxious teenager now 17 next month who although extremely beautiful has been bullied and teased having to go to the toilet so often as this also caused bladder inflamation and the need to use the toilet frequently constantly feeling like you have a bladder infection.I recently read in the national crohns colitis news letter of a teenage boy with penile crohns enquiring if anyone else had been diagnosed of this.

I find that strange infliiximb infusions are the only medication that have kept this under control, and reduced the vulva swelling immensely. I know of a top specialist in vulva disease Wendy Reid The Royal Free Hospital London whom also specialise in crohns disease my daughter has seen her on several occasions a 200 mile journey from our neck of the woods.
Hope this may be helpful to you
Mrs j

There is a procedure called labiaplasty. It is controversial but there are physicians that specialize in it.

I had my entire Large Colon, and rectal area removed, making my ileostomy permanent.

So just when I think my proverbial break has come, even if with the cost of a permanent bag, my upper lip turns beet red, and swells outwards like Joe Camel.. At the same time, my entire genital region also turned inflamed and ulcerated..

Despite my long history with aggressive Crohns, my doctors took two years to figure out I developed OroFacial and metastatic Genital Crohns.

Now the metastatic Crohns is back, and EVEN John a Hopkins doctors, which I had to move to be by them cuz local specialists could no longer deal with the complicated nature of my rare Crohns, yet even John Hopkins can't seem to figure out who is supposed to treat me: Gastro's, the normal Crohns doctors; Urologist, cuz of where it's at?; or Dermatology, cuz it's completely separate from my intestinal system..

I'm in agony and despair.. After 20yrs of this, it's only getting worse. Pardon my French, but 'EFF!' Crohns disease!!!!!!!!!

(So I understand your question completely, but sorry, I'm not able to answer cuz even I'm not sure, hell even John Hopkins gastros aren't sure)