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01-29-2016, 02:42 PM   #1
katertot
 
Join Date: Sep 2015
Location: Michigan
Vulvar Ulcers

Hey everyone,

I'm sure there is no such thing as TMI at this place, but, as you can see from the title, this post deals with varying vaginal issues.

I've got a painful issue and I'm just wondering if anyone else has experience this. I went to my gyno about 2 months ago because I was experiencing some sharp pain. It turned out I had an ulcer on my vulva. She said it was related to Crohn's. I asked my GI about it and he confirmed that it's possible it could be related. I am very lucky that the university hospital system I go to has a vulvar diseases clinic, so I was referred there. I was prescribed a steroid ointment. I used that for 5 weeks, but after I stopped I still had pain. I went back and had to get a biopsy (ouch!). The biopsy ended up being on the opposite side of my original ulcer. The biopsy was a week ago and I am having a lot of pain on the original side (that was not biopsied). I've also had a recurrent yeast infection for about a month, though that seems like it is finally going away. I called the doc back and she wants to see me again since I'm still having pain.

Has anyone experienced this? I had a bunch of tests that ruled out herpes 1&2, HIV, syphilis, chlamydia, gonorrhea, CMV, BV, and mono. I'm just feeling really frustrated because my intestinal issues are finally almost non-existent. Then this happens and on top of that my costochondritis is flaring and I was diagnosed with episcleritis (just finished my steroid drops).

My GI and vulva specialist are great and very responsive. I know they'll give me the answers I need when I see them both next week. I'm just grumpy because this stupid ulcer makes it hurt to sit, walk, and urinate.

Thanks for listening.
01-29-2016, 04:31 PM   #2
fuzzy butterfly
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Join Date: Jul 2015
Location: manchester, United Kingdom

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Hi im so sorry you are having such problems. I have not experienced this, so cant offer advice. Just wanted to say that i feel for you n send you my support and hope your docs can help get you through this and give you relief. Best wishes. 💕
01-29-2016, 06:30 PM   #3
Lady Organic
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offering support too. have you tried sitz bath?
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
02-01-2016, 09:58 AM   #4
katertot
 
Join Date: Sep 2015
Location: Michigan
Thank you both for your support! A sitz bath and placing a heating pad down when I sit has made it a little more tolerable.
02-01-2016, 12:03 PM   #5
fuzzy butterfly
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Glad you have got some relief . Hope you can get total relief soon hun. Love n hugs 💕💕
02-11-2016, 04:24 AM   #6
navycamarogirl
 
Join Date: Feb 2016
Location: Brockport, New York
I have just been diagnosed with Crohn's last week, however I have been seeing a vulvar specialist for some time to treat hidradenitis, in my last visit, she told me that I was not having a hs flair, but I had vulvar Crohn's, I guess I have fistulas that lead to my vulva. Mine are open and draining, so I don't have a problem with pain, but in the past I have used heat and ice packs and lots of soaking. Hope you get some relief soon! I know I its not fun.
02-11-2016, 01:10 PM   #7
Plittler
 
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Join Date: Jan 2016
Location: Bristol, United Kingdom
I had this problem around 6 years ago and never got a diagnosis. It lasted for around 2-3 months and was excruciating so I feel your pain! It seemed most similar to herpes but without going into detail I couldn't see how it could and after having 3 different tests for herpes all came back negative. As I then didn't have any further problems with this I just put it behind me. I am now under investigation for possible Crohn's having recently had a resection of a stricture and am now questioning whether this previous problem was linked at all. I hope you get some relief soon. I found a water jug while urinating very helpful.x
02-12-2016, 08:49 AM   #8
katertot
 
Join Date: Sep 2015
Location: Michigan
Thanks for the support navycamarogirl and Plittler, I'm so sorry that you've had to deal with these issues too. I visited my specialist last week and they were able to say that the ulcers aren't related to Crohn's--which is good news. I was also checked for trich, herpes, and every other STD multiple times and all of those tests were negative. She said they were apthous ulcers, basically canker sores on the vulva (still painful as all get out!). And she did also suggest using a water bottle while urinating. A little hard to get the hang of, but it was such a relief! I'm continuing the topical steroids and am getting checked out again in about a month. I did also get diagnosed with desquamative inflammatory vaginitis, but am on vaginal clindamycin and hope that gets it cleared up soon.

Thanks again for you kind words. I hate that any of us have experience these issues, but it helps to feel like I'm not alone.
02-12-2016, 08:59 AM   #9
Plittler
 
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Join Date: Jan 2016
Location: Bristol, United Kingdom
Good to hear that it's not related to Crohn's. Hopefully it is a one off occurrence and I hope they clear up soon for you. I also found a Luke warm salt bath quite soothing too.
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