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07-09-2012, 01:18 PM   #1
dgg
 
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Vaginal lesion

Sorry in advance if this grosses anyone out but I wanted to see if anyone (women!) has experienced a paper-cut like lesion in the vaginal area. I have Crohn's and suffer from a peri-anal fistula and about 3 months ago started getting a cracked skin lesion near my labia area. It started out as dry, itchy white skin that then cracked and spread down. This all started right around the time that my remicade infusion was increased to 10 ml (from 5 ml) and to every 4 weeks (had been every 8 wks) and 6 MP was added. Not sure if this is a coincidence or not. My GI has not heard of this before.

I saw my ob-gyn who gave me a topical steroid cream and it healed up in 2 days. Then when I stopped the cream the cracking returns (this has been going on for 3 months). My ob-gyn took swabs and ruled out herpes or other viral issues so I'm not sure what this can be. A friend who is an ob-gyn told me it sounds like an autoimmune issue. I am going to a different gyno who supposedly has an expertise in vaginal infections but I'm wondering if there could be any lin to my Crohn's or any of the medications. Has anyone else heard of anything like this? Thanks in advance!
07-14-2012, 10:34 AM   #2
SeniorSue
 
Join Date: Jul 2012
Location: Iowa
What an embarassing topic to talk about! Do you have any other symptoms? Have you checked the side effects of the drugs you are taking? I hope you are able to get some help to figure it out. I am currently experiencing vaginal ulcers (Ouch!). I had one day I felt lousy, stomach upset, fatigue, D, etc. The next day I felt better, but the ulcers appeared in my mouth and vaginal area. I often have mouth sores, but this is a first for the vaginal area. This disease has so many complications that aren't addressed very well, so the persons who are suffering simply don't know what to do. It is hard to research problems like these. SO FRUSTRATING!

Last edited by SeniorSue; 07-14-2012 at 10:38 AM. Reason: Additional text
07-20-2012, 08:00 PM   #3
dustyblue15
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Hey DGG-

I think I have the exact same thing as you. It was diagnosed by my OBGYN as "lichen sclerosus." She has given me steroid creams to use down there and it does help it, but it always comes back. She took a biopsy of the line (it looks like a red line) and that is how she confirmed it. It usually gets worse right before my period and I don't think it ever goes away. I am pretty sure it is related to having an overactive immune system. Just google it. You are not alone, hope that helps
07-21-2012, 06:39 PM   #4
Tenacity
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DGG -

Just wanted to mention that I have never heard of anyone going from getting Remicade every 8 weeks, to every 4 weeks, at double the dose. Normally, they all start out at 8 weeks, and then 6 if it does not work - never heard of going to every 4 weeks.
08-19-2012, 10:11 PM   #5
dragonfly
 
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maybe you should see a derm??? too many GI/colorectal drs think they know it all and want to tell you what it is and how to treat it. it took me 4 drs and thats not even counting all the others before i started going to CC to FINALLY dx me with HS and that was after i seen a derm. actually my colorectal surgen and the derm were fighting over who was right and how to treat it....i moved on and now see a wonderful dr at university hospital who specializes in crohns/HS and i could not be happier with dr not the disease! always always get another opinion and be careful on how your treating it and what products your using as in my case all the mis-dx has caused my HS to be much much worse (having been cut & drained and messed with too many times) i had to see a plastic surgen and thank God i will not need a skin graft. i hope you finally figure out what is going on and the proper way to treat it and along with that i wish you the very best of luck!
11-22-2012, 08:55 PM   #6
acheallova
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Dgg,
I went undiagnosed with crohns for close to 30 years they say. But in the height of really starting to feel bad, i started getting those lesions. No one really could tell me what they were, even after biospy n analysis. Its scary. But from doing research on lichen scelurosis, and having have eczema since childhood, it makes sense. I was just diagnosed last week finally with LS, which shouldn't have been a surprise, i now take comfort in knowing. It was also linked to having a hysterectomy at a fairly young age, not good hormone control and family history of autoimmune diseases ( every member of family, but me UNTIL 7 months ago). I do hope you can find answers soon, and find some peace in it. Good luck. Muah- hugs-
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04-22-2013, 12:16 AM   #7
Avee
 
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Ugh, I had the same issue and my doctor first told me it was a fungus, then told me it was eczema, then went back to fungus.... I never really figured out what it was/is, but like you, I was given a steroid cream and it clears up for a few days and comes back. Super frustrating, especially in such an akward place. :s
04-24-2013, 10:15 PM   #8
my little penguin
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have you seen a dermatologist?
could be remicade induced psoriasis ( yes it can effect that area as well- which why it would go away with steroids only to come back later.)
Please find a dermo who is aware of crohn's.

PS -( not a doc just a mom) so please see a doc.
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04-29-2013, 02:12 PM   #9
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I've had these prior to being diagnosed with crohn's.. having more than one at a time makes interesting acrobatics in the bathroom as pee burns the crap out of it. good luck!
04-30-2013, 02:06 PM   #10
Lady Organic
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as other poster mentionned, it may be lichen sclerosus.
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04-30-2013, 02:49 PM   #11
LauraGrace
 
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I've had gyno issues for what seems like forever! Long before my Crohn's diagnosis. I actually had a vaginal tear at one point that wouldn't heal at all. The gyno gave me all sorts of creams and stuff. They even tried to heal it using silver nitrate (that was NOT FUN). After a few months they decided to do surgery to remove some of the skin and let it heal. Luckily that worked, but it was really painful and required actual surgery. Since then I've had other tears, but none have been as bad.
04-30-2013, 02:57 PM   #12
LauraGrace
 
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Dragonfly- Thank you!! This is the first I've ever heard of HS, and I seriously think I have it! I am going to ask my doctor about it on my next visit. I have been having random cysts/infections for the past few years. They will pop up pretty quickly. Then sometimes they go away on their own, but sometimes they will get really out of control. So far I have had to have two taken care of in the doctors office and one that landed me in the hospital because it had turned into a fistula. All the doctors have said is just that it's probably caused by the Humira, or that it's just because my craptastic immune system.
07-11-2013, 11:14 AM   #13
SeniorSue
 
Join Date: Jul 2012
Location: Iowa
I know it has been almost exactly a year since I first posted my question about the vaginal lesioin. Thanks to each of you who replied to the thread! When a few of you referred to "HS", are you talking about Herpes Simplex?

Like several of you indicated, I have had mouth sores for many years. I seldom get them anymore, but the first time the vaginal lesions appeared, I had the mouth sores at the same time. During the past year I have had the vaginal lesions a few times but am currently free of them. I was prescribed Valtrex, the pain and burning would be better within 12 hours and they would disappear completely within a few days. I do not take Valtrex on a regular daily basis, taking it only if I have an outbreak. I have been told it is related to my poor immune system.

I saw a dermatologist yesterday and no lichen schlerosus.

I will post a new thread soon about some other skin related information I recently did some research on. Again, thanks for your replies.
07-28-2013, 09:47 PM   #14
dragonfly
 
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HS is Hidradenitis Suppurativa, a skin disease.
07-29-2013, 12:17 AM   #15
Mountaingem
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I just wanted to throw this in-I experienced extreme vaginal dryness while on Pentasa (I know it was that med that caused it because when I went off of it things went back to normal) and I experienced similar fissures on the outside area. Try using an extra gentle soap when bathing and use antichafing cream-this may be a simplistic approach to your problem, but these measures helped me and I thought I'd share in hopes it might help you, too.
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07-31-2013, 02:16 PM   #16
mish2575
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Dragonfly- Thank you!! This is the first I've ever heard of HS, and I seriously think I have it! I am going to ask my doctor about it on my next visit. I have been having random cysts/infections for the past few years. They will pop up pretty quickly. Then sometimes they go away on their own, but sometimes they will get really out of control. So far I have had to have two taken care of in the doctors office and one that landed me in the hospital because it had turned into a fistula. All the doctors have said is just that it's probably caused by the Humira, or that it's just because my craptastic immune system.
I have HS. Humira is supposed to help! LOL I'm on Humira but was on it before and since it developed (during pregnancy). I've lost weight and its been almost 2 years since I had the baby. I'm better but I have a few lingerers that I suspect i'll have to have surgically corrected. I havent developed any new ones. I highly doubt Humira causes it.
02-01-2016, 08:11 AM   #17
grumpyoldwoman
 
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Although this is quite an old thread I would just like to add that I, too, have had the lichen thing for a few years now, having had Crohn's for more than 30 years, with a major resection in 1995.
Since then I have been very lucky to be able to manage the Crohn's by diet/lifestyle and am not on any medication, which is why I was very reluctant to start on some heavy steroid cream to treat something that is not really a huge thing for me - it is irritating at most, with the occasional cracking and very dry skin.
After living in Germany for a few years I was told by a doctor there that they use Vitamin E oil to treat this, so I gave it a go. I buy the stuff from health food shops, it's not cheap, but it works a treat. I use it a bit like a moisturiser - slap it on generously morning and evening, it's very soothing and I would not want to be without it now. Might work for some and will do no harm.
08-15-2016, 02:19 PM   #18
kiltubrid
 
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It sounds like lichen scleridia (itchy dry white skin is a major symptom), which may or may not be Crohn's related. It's most common in post-menopausal women but anyone (even men) any age can get it. It is an auto-immune thing, treated with a steroid topical cream or ointment. it never completely goes away but you can control it with meds. Once it's under control, you can keep it that way with a maintenance application twice a week.

I had this condition diagnosed by a gynecologist.
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08-19-2016, 04:30 AM   #19
lacey2
 
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I've had this problem off and on, and finally, using the estrogen inserts, it's cleared up. As long as I don't get lazy, I don't get the cracks!
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