Community Forum

hey ladies! i'm a long time sufferer but first time diagnoser. meaning i've had issues for more than 10 years but just recently after my pregnancy i have been officially diagnosed crohns and started treatments. 

i went in for my normal pap smear test on monday and i feel like i've gotten *** slapped by my crohns...again! i was starting to feel better last week after a 2 week flare up and so my husband and i had sex. there was quite a bit of pain.  

well my doctor was down there poking around i figured i would let her do a full 10-point inspection. i tell her what happened and she pokes around a little and goes "oh.....*big sigh* oh. i'm sorry...i see....your growing a little piece of skin over the bottom of your vagina and when something is inserted it is stretching it. sorry to even say it....but.....it's related to your crohns!!" seems i'm a real gold mine for these "1 out of 1,000" type symptoms. this isn't the first "let me go get my trainee to show this to" issue i've had.

my vagina is literally closing for business! it's hard to describe but there is a v shaped piece of skin that is growing between the bottom v of my vagina nearing the vaginal opening. it's pretty thick, hurts when you stretch it out, and it's still growing. in my disbelief i asked my doctor if we could do anything about it, like cut it or i don't know, burn it off (hey, i'm motivated to keep that area in working order!) she laughed and said no but offered some steroid cream i could try to thin it out but now i'm thinking i'll only thin it out and make it fragile and it will tear and grow back with more vengeance. 

i'm looking for some support, some tips, or some happy endings (pun totally intended). i feel like my favorite toy just broke!

I'm sorry to hear you're going through this. I took me years to realize that my vaginal issues were Crohn's related even though I was diagnosed with Crohn's 20 years ago. I started having vaginal issues 3 years ago and I guess I was in denial that it was Crohn's because I thought getting a ileostomy and having everything removed would heal me (don't laugh!). 
Anyways, after several bouts of treatment with humira and remicade to no change, my doctor sent me to Mayo where I was diagnosed with Chron's of the skin. I was given an ointment (Tacrolimus 0.1%) to help heal my vaginal areas and felt instant relief. I had fissures and extra skin growing in the vaginal region externally so I'm not sure if it'll help internally but it's worth investigating. 

 Reply posted for jenniferdavis.

Well we will definitely have to keep in touch.  I feel so horrible because my husband has been so patient as well.  I will definitely ask about the steroid cream and let you know if I hear anything else.

 Reply posted for jenniferdavis.

I'm not alone! Well, that kind of sucks but it does make me feel like I'm not a freak. I feel the same way like "being split apart" I've been using the steroid cream for a while now and it have become a little thinner and more flexible which I can say, has made a huge difference in the sex life. I'm so lucky to have a husband that is understanding because basically sex is just all pain now. I did discover one thing that was like a huge advancement for us. Position! Everything has been painful until we tried an adjusted missionary. I'm going to liken it to churning butter, if that makes sense lol. Tmi but this is basically the worst symptom I've had vs. all the Crohns stuff combined. Taking see away? That's just plain cruel. Hopefully you will have luck with your doctor tomorrow. Let me know if they come up with a magic cure!

 Reply posted for unholey.

OMG I am so glad you posted this because I have just undergone almost 3 years of constant surgeries and when my husband and I have sex it is really painful.  My GI doctor gave me prescription strength lidocaine to use right before but it still feels like I am being ripped apart.   I had read it could be because when you have multiple surgeries your uterus can drop but it just didn't seem right.  I have been thinking about going to see my OB but now I am going to make an appointment tomorrow.  Sorry I don't have any advice for you but I really appreciate you sharing because I felt horrible and like I was the only one!!  Please keep us updated if you find anything else out.
Best of Luck!!

 Reply posted for unholey.

Oh I'm so sorry to hear of your "unholey" issues. I also am a long time sufferer and have recently diagnosed. My only suggestion would be to ask you Gastro doctor.y doctor seems to beore sensitive to issues related to the Crohn's and seems to have more answers for me. Just like I would never have my Gastro doctor deliver a baby, I would not expect my gynecologist or internist to know all the answers dealing with the Crohn's. I bet your GI doctor would have a better direction for you. Best of luck and welcome to the purple club!