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Discussion:
Vulvar Crohn's (Ladies Only)
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Hello,

I had surgery back in April to have a deep tissue cyst removed from my Vulva / Groin area. Shortly after, the incision became infected, which eventually led to a non-healing, infected wound for months. After about four months of dealing with this, with no anti-biotics (having CD, they were afraid that it would affect my stomach) my gyno decided that she had to go back in as the cyst site had started to tunnel into my body (my first thought was a fistula, but there was no tunneling to my digestive tract). I had my surgery in November and found out that it was a fistula with an abcess and that I have a rare form of Crohn's called Vulvar Crohn's (Crohn's not associated with the digestive tract, since the fistula was between the tissue in my groin and my vaginal wall). This is extremely rare and occurs only in about 2% of women who have Crohn's. Needless to say, due to its rareity, it is impossible to find any information on it. I am doing better now, but am still quite sore. It was a long arduous recovery. My gastro has increased my meds and I am Flagyl for about a month to prevent infection. I just wanted to know if any of you women have heard of this or have any experience with it? As if Crohn's wasn't gross enough, now it is affecting my "lady parts" and consequently my sex life (even more than before). Just curious if anyone has any thoughts on it.
Posted on 12/20/11, 11:52 am
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Reply #1 - 12/21/11  2:51am
" I am so sorry to hear about your rare and painful sounding diagnosis! I have never heard of it before but I can't imagine how much thay has effected your life. You poor thing!

So what is the plan after the flagyl? Steroids? If you have any question about medication we are all experts on that topic. Please ask and it take care of yourself. Rest and stress relief is key in getting better. Take care of yourself :) "
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Reply #2 - 12/21/11  2:55am
" Hey I actually just looked at your profile and saw you have already been diagnosed with CD and this is just a new add on! Sorry for not realizing that sooner! So what is the plan? At least you have the holidays to relax! "
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Reply #3 - 12/21/11  6:53pm
" I am so sorry to hear about this. I have UC and had not heard about Vulvar Crohns before this. I know how much UC has affected my body image and sex life let alone having my 'lady parts' that involved with the disease. :(

I wish I could give you a physical hug.

Please rest as much as you can and continue to heal.

Rachel "
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Reply #4 - 12/21/11  11:19pm
" Didn't know this was a different kind of CD... My sister had issues such as this she had an abcess form from a fistula - not sure where it was trying to route itself to but it really caused her to be a sick puppy - she had her colon removed it's been a long time - she is on Remicade well over 10 years now and has been doing great! She is a ball of energy - it's amazing! Good luck to you! "
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Reply #5 - 12/26/11  11:39am
" Thank you all for your support. This condition is in addition to my CD that I already have. It is basically just a rare manifestation of the disease. I had an appointment with my gastro the other day and we are basically going to see how I respond to my increase in medications for the next two months. If at my next appointment in February I still am in a flare, then we are going to look into Cimzia injections. From what I have read the Cimzia shots once a month have helped a lot of people. My father is currently on Remicade for his CD and has been urging me to ask my doctor about it for a while now. Cimzia is a newer treatment similiar to Remicade except that people tend to have less of a reaction to it compared to Remicade or Humira. So, it is kind of a waiting game right now. I was doing pretty well until my grandmother passed away this past week. Now, because of the stress, my CD is flaring. Hopefully things will start getting better soon. Luckily I have healed up well from my surgery (very rare for me as I am prone to infection). I am looking forward to the new year and praying that it is a healthy one at that. Thanks again for your support. "
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Reply #6 - 12/27/11  2:06am
" Again I apologize for not realizing you had crohn's too. I have been trying to manage my stress by prayer/meditation and working out. It's been super hard not to stress out! My husband had a seizure and we've been dealing with that. I feel my CD starting to think about getting worse so I am trying to really manage my stress.

I am so worry to hear about your grandmother. Sometimes it's okay to say no to people. "
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Reply #7 - 02/11/12  7:43pm
" Before I was diagnosed with crohn's I had four surgeries related to a prolapsed uterus. The first showed my colon stretched around other organs so they removed some of it. Now they think it might have been crohn's. I had one surgery to tighten sphincter muscles and they went in vaginally. I have one spot that is really painful in my lady parts right at the spot of penetration. I wonder if that is crohn's or a ridiculous coincidence. I was diagnosed with crohn's last year with a 60% blockage and had resection. I so understand your feelings about the sex life. We need to talk sister in crohn's. I take remicade and it is helping prevent new blockage but I still have symptoms. This is a a lot to get used to. "
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Reply #8 - 02/28/12  5:29pm
" Thank you all for your support. It has now been about 3 months since my surgery and I am still having issues with this. It seems that during and after intercourse, the whole area becomes inflamed and will feel almost as if I have torn somewhere down there. I thought that maybe I was just tearing where the stitches had been, but I no longer think that that is the case.

I think that it is more the vulvar crohn's and not just me recovering from my surgery anymore, as it hurts in areas that were not affected by the surgery after intercourse. It is pretty frustrating, but we have learned to find other ways of being affectionate.

I was going to go on Cimzia but my insurance would not approve of it. Now my GI is thinking of putting me on Humira. Not sure how I feel about Humira over Cimzia, since I have heard that it has more side effects. I'm not sure if the Humira would help with the Vulvar crohns or what, but I am hoping it will. Nothing is worse than being a 25 year old newlywed who can't partake in newlywed "activities". Have any of you tried Humira? If so, did help with your non-digestive system symptoms? "
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Reply #9 - 07/10/12  4:34pm
" I have not used Humira....yet. Have been on Remicade for four years and it has been amazing - has healed fistulas thru labia and given me back my life. My understanding is that Humira works much the same way. There can be side effects with anything and different people seem to have different reactions. Because so much is unknown in this field it often seems very much a " have to give it a try to find out". The best thing that happened to me was to find a dermatologist who knew about vulvar crohns. I'm so glad to find all of you - have felt very alone. "
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Reply #10 - 08/09/12  9:06pm
" Hello. I am so sorry that you are going threw this. I an having surgery for a vaginal fistula on Aug 16th. Mannnn I am praying and excited to get this situation healed. I have to walk in faith. There is no where to go. his support group is alwsome.

CD does some serious damage. Lady areas should not included. Thats how I feel. The pain, the odor, the embarrassment, sometimes become very heavy. Belive me sister I know what your going through. I will keep you in my prayers ever night. Please Keep in touch. "

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