Vaginal Crohns Disease

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Fl Kate
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/23/2007 3:43 PM (GMT -7)   
Has anyone ever been diagnosed with Vaginal Crohns Disease? I have extreme vaginal swelling, ulcerations, and tenderness, as well as a vaginal discharge that has casued a breakdown of my perianal wound (rectal stump was removed in 01). I also have a collection of fluid where my rectal stump should be, but no indication of a fistula.
I was wondering how you were treated, and what kind of doctor treated you. Any help or suggestions would be appreciated.
Thankyou,
 
FL Kate

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/23/2007 4:02 PM (GMT -7)   
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
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


Fl Kate
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/23/2007 4:51 PM (GMT -7)   
Yes Crohns is an intestinal disease, but it can also present itself anywhere on the body, the joints, eyes, skin issues and reproductively. Vaginal Crohns is not very common, and therefore there is not alot of information available on it, thats why Im hoping someone on here can help me out. If youd like to read more about the gynological aspects of Crohns check out this article.
 

Thanks for your reply...
 
[*Just activated the hyperlink - C2]

Post Edited By Moderator (CrohnieToo) : 9/23/2007 6:51:45 PM (GMT-6)


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/23/2007 5:55 PM (GMT -7)   
Welcome, and I wish that I could help you....hopefully someone will be along that can. Thanks for the article....it was very good!

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/23/2007 6:07 PM (GMT -7)   
Kate ,my apologies. I was aware of the joints, eyes, etc, but never the vagina. Thanks for the link, it was interesting...
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/23/2007 6:27 PM (GMT -7)   
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
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and preparing to begin Humira.


crohnsdaj
New Member


Date Joined Oct 2011
Total Posts : 3
   Posted 7/31/2012 9:13 PM (GMT -7)   
Hi there.....yes, I do have vaginal Crohn's and I have had it for over 12 years.   I'm now on Remicade, Pentasa, and Imuran....and seems to keep all Crohn's symptoms in check.   Unfortunately....I'm flaring now and was looking to see if there are any new thoughts on relief or new triggers.  Over the last 6 years I notice that stress and coffee often trigger and of course this week I have had lots of both.  :-)    It is very frustrating as OBGYNs often dismiss my history.... "there is no such thing".   I have also moved 4 times which makes matters more frustrating due to each time a move occurs...new doctors.   Look like no new info out there.  I wish that I woudl have known about this sight during your first post as it would have been nice to know I was not crazy!!
 
Good luck and hope all is well.

Jen39
Regular Member


Date Joined Apr 2011
Total Posts : 44
   Posted 8/1/2012 12:18 PM (GMT -7)   
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.

Cindyt
Regular Member


Date Joined Jul 2012
Total Posts : 34
   Posted 8/1/2012 12:33 PM (GMT -7)   
Dear lord..another place crohns can be??i am so sorry!!):

Wonderwen
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 8/1/2012 6:35 PM (GMT -7)   
I have suffered "down there" for a long time and still have zero answers.

ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 8/2/2012 7:17 PM (GMT -7)   
Look up Lichen sclerosis, another possibility.

lizziecee
New Member


Date Joined Jul 2006
Total Posts : 14
   Posted 1/20/2013 6:15 AM (GMT -7)   
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.

misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 1/20/2013 7:26 AM (GMT -7)   
Lizziecee - Thanks for the info., keep us posted on what happens!

I have Crohn's Disease and since being diagnosed, sex has become very painful for me. I have asked my gyno about it and during examination says she sees nothing wrong. I don't understand how I was able to have intercourse previously without a problem and then quickly after I got sick, it became very painful. The two have to be correlated! My dr did say that inflammation can sometimes cause some issues, but that it most likely is mental. It is not mental. I wonder if these issues play a part in what's going on with me?
30y/o F, diagnosed with Crohn's Disease at 25 y/o. Taking 6mp & Asacol.

lizziecee
New Member


Date Joined Jul 2006
Total Posts : 14
   Posted 1/20/2013 3:02 PM (GMT -7)   
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

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1034
   Posted 1/20/2013 7:08 PM (GMT -7)   
OMG this sounds so awful. I'm sorry you guys ar heaving to go through this. And doctors not believing you or being bothered to look it up. How awful. Good luck
30 year old female. 2007 diagnosed with UC, also have Hypothyroidism, Leukocytosis, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive advantage lactose defense, lomotil, klor-con20, started Humira 12/31/12

mrs j1959
New Member


Date Joined May 2013
Total Posts : 2
   Posted 5/7/2013 4:27 PM (GMT -7)   
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.

lizziecee
New Member


Date Joined Jul 2006
Total Posts : 14
   Posted 5/7/2013 11:43 PM (GMT -7)   
So sorry to hear of your daughter's experiences with Crohn's/vulva. I have finally got the results of the biopsy and resection - it is VIN3 with Lichen Sclerosus.  My gastro has stopped my immuno-suppressant medication (methotrexate and/or infliximab) as he says there is evidence that these drugs can cause vulval VIN.  I have an appt next week to see a Gynae Oncologist for another colposcopy and biopsy, but this time not going to let them do any resection of the affected skin on the vulva with just a local anaesthetic.  My gastro is trying to track down the "expert in vulval cancer" whom I have been seeing, but I believe he has retired.  Not sure what they do will do to keep it at bay - he is trying to find a solution.
 
Take care,
Liz.

mrs j1959
New Member


Date Joined May 2013
Total Posts : 2
   Posted 5/8/2013 12:30 AM (GMT -7)   
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

sana--
New Member


Date Joined Aug 2015
Total Posts : 1
   Posted 8/31/2015 2:43 AM (GMT -7)   
i have a extra loose skin with one side of vagina. its almost 1 inch long. and i am depressed that it may b create problem during sex. i am 21 years old. kindly help me and tell me what can i do?

platinumpixie
Veteran Member


Date Joined Oct 2014
Total Posts : 651
   Posted 9/2/2015 2:06 AM (GMT -7)   
There is a procedure called labiaplasty. It is controversial but there are physicians that specialize in it.

irishgal1
Regular Member


Date Joined Aug 2015
Total Posts : 59
   Posted 9/2/2015 5:17 PM (GMT -7)   
Quick note about vulvular/metastatic Crohn's. It's very rare and often misdiagnosed. Your best bet is a dermatology immunologist, and maybe one who specializes in that region. Any treatment that will suppress the GI Crohn's may work for suppressing this as well. There's some anecdotal evidence that Remicade may work well among the TNF choices. Flagyl works as a short term treatment, and clobatesol ointment also does wonders. I'd also consider AntiMAP therapy, as this worked in at least two cases I'm familiar with as a long term solution. There's no approved treatment pathway since it's so rare, but keeping it actively under control is the goal.

I bet that as we see the number of Crohn's cases rise, we'll also see the metastatic presentations rise in correlation and these will (unfortunately) not become so rare. At some point, a treatment pathway will need to be established.

scm11478
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 5/14/2016 10:11 AM (GMT -7)   
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)

irishgal1
Regular Member


Date Joined Aug 2015
Total Posts : 59
   Posted 5/14/2016 1:50 PM (GMT -7)   
SCM - OMG, how horrible! I completely feel for you and wish I could give you a huge hug. That's so incredibly painful. Have you considered AntiMAP treatment? If it's vulvar Crohn's, aren't they treating you with clobatesol (steroids) and flagyl? That's the only possible treatment pathway I've heard of, but there's technically none. Have you noticed any meds that make it better? Maybe since there's technically no treatment pathway, you could convince them to treat you with something off label, like AMAT or CBD.

If you want a second opinion (or a better doc!) go see Dr. Chamberlin in New Mexico. He'll consult with your docs as well if they are interested in learning more about AMAT. I know he's dealt with a case and he's a great guy as well. This presentation is super rare. Hang in there.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 9:12 PM (GMT -7)
There are a total of 2,732,392 posts in 301,013 threads.
View Active Threads


Who's Online
This forum has 151175 registered members. Please welcome our newest member, melissapsa.
261 Guest(s), 12 Registered Member(s) are currently online.  Details
PeteZa, bluelyme, dacarte3, Scaredy Cat, Girlie, JEN02, magoo2, LG13, ChickNorris, Hawaii3654, Ggrlsav, BostonMarigold


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer