Swollen/Red/Sore right labia - what could it be?

I've posted this on a forum elsewhere, but wanted to get feedback from fellow crohnies.  Any insight would be so appreciated!  (Wow, this turned out longer than expected, sorry about that).

I have a jpouch.  Was diagnosed w/Crohn's in '04.  For years, especially the last year, I get "flares" - flu-like symptoms of fevers, headaches, sore eyes, malaise, high CRP/ESR.  Sometimes (or not) accompanied by jpouch issues. Previously given levaquin which doesn't do much. Now on lialda/pepto-bismol/citrucel/VSL#3DS, doing better in pouch area, but still have episodes of the "flare".

Recently (12/9) I developed a small lump in my groin area (rt. side). I happened to have an appt. with my CR surgeon in 5 days, so had him check it out. He brushed it off as due to a cortisone shot I had in my foot a few weeks earlier. (I kid you not).  He did a digital exam and a rigid scope. I bled a lot during it and the pain was incredible during the digital exam - worst pain I ever had in any exam, and I usually have a pretty high pain threshold. He said there was inflammation (even though my pouch had been well behaved for a week or 2 prior to that).

I asked a million questions, some re. fistulas. He said there are no fistulas or abscesses - and I quote - "because he would be able to see them, as I am so thin".  Can doctors always "see" fistulas/abscesss?

This groin lump I developed on Dec. 9 started growing into a ropy lumpy thing (not huge, but definitely hard and there), and my entire right groin/labia became very swollen, red and sore, starting the day after my exam. Painful to walk, sit, move. I had more fevers, but it's hard to determine whether it's from this thing or from my other thing or if the 2 things are related.

I thought maybe I had a yeast infection, as I was itchy, so used some OTC vaginal miconazole. No help. Saw my gyne. 12/21, who did an exam and thought she felt something in the perineal area - she wondered if it could be a fistula or abscess or something like that causing an infection. She said it wasn't in the right place for bartholin gland involvement.   She was concerned with the infection - she also said this wasn't in her realm (I think my jpouch scares her a bit) so she told me to see my surgeon (or PCP), but gave me some keflex in the meanwhile for the obvious infection. Called my surgeon who didn't return my call for 2 days and when he did he was totally worthless [insert bad word of choice].  Called my PCP who got me in immediately and ordered a pelvic MRI. 

I've been on the keflex for 9 days now, swelling has gone down just a tad, the pain/discomfort is still there, but not unbearable.  I had a pelvic MRI done 2 days ago, but no results yet (I'm calling soon!).  Went to another gynec. and asked for a test for vaginal infections, just to rule it out, if for no other reason.  The culture results come back in 48 hrs.  I had a pelvic ultrasound which was normal.

If this is a fistula or abscess, would the symptom of swelling fit in?  I don't see any sores, or pimple-like things - can/do abscesses stay completely beneath the skin?  I feel a slight hardness along the outer edge of the labia - can't tell if this is lymph node involvement or something else.   Does this sound like the start of a RV fistula or other kind of fistula?  Or an abscess?   I'm having no issues with the anal/perineal area that I can tell, only the right labia.  I thought if it were RV, I'd have a discharge - I haven't had anything really noticeable, except for a tiny bit at night once in a great while, and that's been awhile ago.  I'm menopausal if that matters.  And I understand gas is passed from the vagina if it is RV. What's this like? Little bubbles escaping (I experience this from time-to-time, but figured it was a normal female-thing), or something more noticeable?  Sorry for being a little graphic, I just have no experience in this area (and I sure hope I won't in the future).  

Thank you so much in advance for any insight.  I've read many of the posts on fistulas, but haven't come across one with the issues noted here.  Thanks again, and best wishes to all.

I have sub/cutanous crohns and how it manifest for me is what ends up looking like blood blisters once they reach the surface of the skin, and they are all over the groin area.  If they rupture it leaks puss and blood.

Do you have a GI? Because that sounds exactly like the description of a vaginal fistula to me. I would call them ASAP. If you don't have a GI you need one. That is who should be following you. A PCP and surgeon don't have the training to give you the care you need - like having you on maintenance meds.

As for being able to see a fistula with his eyes! I cannot believe he said that. It is absolutely untrue. Sometimes they can't even visualize a known fistula with MRI. Surgeon appears to be completely out of his depth.

I am not a doc but it sure sounds like you have been having CD flares off and on. Probably need more CD meds. Doing surgery doesn't cure CD and you can have recurrence in less than a year.

Lialda doesn't treat the small intestine - only the large intestine and/or your pouch.

So you are essentially getting no treatment for any CD in your small intestine. Even if you didn't have detectable active disease there before you could have developed it since surgery.

If your PCP has not referred you to a GI or recommended that you be followed by one I am shocked.

Best wishes,

Patricia

Patricia, thanks for your comments! I have always had doubt in my mind about the Crohn's diagnosis, as it was based mostly on a prometheus test done in '04. I have an appt. scheduled at the Cleveland Clinic Feb. 15 with a well known GI/pouch specialist. However, after I get the results of my MRI, I will probably call my old GI (who I haven't seen since before my surgery in '93) and see if I can get in there SOON.

The Surgeon told me that lialda is used "off-label" for pouchitis/crohn's. And truth-be-told, it may be helping. Not always easy to determine what's helping or what, though.

WARNING - RANT - WARNING - I feel like I'm doing every thing I can to head this thing off - saw the C/R surgeon 5 days after the first sign of the lump/lymph node, when he was no help, went to the OBGYN, then - went to a second OBGYN, then - saw the PCP, requested my vaginal cultures and my MRI, etc. I live in a large city, so there are plenty of doctors. Just not easy to find one that knows what he's doing anymore. It's a sad state of affairs when the patient feels he/she has to do his/her own research and then request specific tests and medications, etc. And, I'm no further along in figuring this out than I was when the lump first appeared. END OF RANT.

Except you all are giving me some food for thought and some direction. Thank you so much.

Sorry dinkley... It is never-ending... and it's so hard to deal with sometimes. I'm so sorry it's a fistula. Can you take Remicade? Maybe they can get you right on to some med that will help with healing it. :-( Thanks for the update. Sending good wishes and hugs.

Patricia, thanks so much for your reply - everything you say makes so much sense. You seem to know your crohn's, and much more. I'd appreciate the link to your article on pouchitis. This (fistula) is just such new territory to me - you know, you think it'll never happen to you. But it apparently does. I'll update again after I talk to the surgeon on Tuesday. Thanks again!!

Well, after all that rant on my part about you maybe having a fistula and active CD I realized that I for one should be clear that, while the symptoms are certainly suggestive of a fistula, it could indeed be something else. (sheepish shrug of shoulders here). It wouldn't be the first time I've been wrong about something

Here's the link to the info on pouchitis. It is on the Crohn's Working Group website - a forum for the summation of recent research and expert opinion aimed at physicians who are actively treating people with IBD.

Forgive me if this lengthy explanation about using this website is unnecessary. It's just that I am cautious about directly linking these articles/presentations on public forums like this. You'll see why once you've read my explanation and/or used the website.

It can be hard to link directly to their articles and you will have to register (free). When I register on medical professionals websites I just always check the other category when it asks what kind of doctor I am, etc.

Fortunately the article on Pouchitis is still listed on the home page so it will be easy to find it if the link doesn't work. The powerpoint presentation by Dr. Bo Shen of Cleveland Clinic (is that who you are seeing??) is third down under the Slide Library heading on the left side of the page:

www.ibdwg.org/eslide/pouchitis/index.cfm

When you get to the page about the presentations it is 3rd down. It takes you to another page that is disclaimers and info you can skip. Scroll to the very bottom of the page and choose "View Presentation".

The format for this particular presentation is powerpoint slides. In case you aren't familiar with this format, you will see the slide and may have to scroll down to see the commentary that goes with the slide.

The reasons I don't often post direct links to this website have to do with the nature of the information. This is a website by expert professionals for the benefit of their less expert colleagues who are practicing in the same or a related field.

The information presented tends to be couched in medical short-hand. Rare complications and side effects are routinely discussed that can scare the patient's pants off. Keep in mind that these are indeed rare - but doctors need to be able to recognize rare when they see it.

The generic GI in Anyplace, USA, may see only 5-10 IBD patients a year. No way he can keep up on the latest research and practice - let alone recognize a rare complication right away. He just doesn't see enough patients for that to happen. This website is largely aimed at that doctor and other GIs who might see 50+ IBD patients a year but are not at a teaching institution or research center and are too busy to follow the latest research.

The doctors writing the presentations are generally active clinicians and researchers at major IBD centers who might see upwards of 1000 patients a year. The sheer volume of patients they see gives them experience and knowledge that these other GI's can't get - even if they wanted to.

So there's my list of caveats and explanations.

Best wishes,

Patricia

I just had the same thing! Inflamed labia and some bumps under the skin. My doc didn't know what it was - it was sore and kept me awake at night and was uncomfortable to sit. I went on a week of antibiotics and it cleared up. I notice now though that I have a new anal skin tag and I'm feeling itchy a lot. Not sure what is going on...

Well I am so glad you got some treatment that helped.

So the CR surgeon decided you have a fistula after all? Or what?

Perhaps you should start a new post asking for advice on wound care. I'm sure some other ladies out there have personal experience that might be helpful.

Hope your appt with Dr. Shen is helpful.

I for one wouldn't be surprised if he recommends putting you on a maintenance med for CD.

Best wishes,

Patricia

FYI RE: Formation of Fistula

Fistulas can be very hard to visualize, even more so until the show themselves.

J-Pouch and fistulas are not uncommon.

Unfortunately, if the doc's can see them, too often they won't believe they are there until they show their exits.

How unfortunate.

you might have vericose vein in there-get an ultrasound done right over the labia-takes only minutes at a vein center but treatment did not help me-i have chronic pain too.

Hmm, forgot about this thread.  May as well update!

Went to the Cleveland Clinic (New Member, I'd be interested in what kind of problems your SIL had up there - I think they're very good).  They did an MRI which showed a pouch/vaginal fistula with several branches coming off of it.  The GI (Shen) injected doxycycline into the anal side of the fistula in hopes of creating scar tissue that would develop and thus close the tract.  He's had success with this in other patients.  Unfortunately, after 3 tries, it appears not to be working in my case, so I am going back to Cleveland for a surgical consult in May.  Shen believes the fistula to be cryptoglandular (caused by severe diarrhea) rather than CD, but CD is still not ruled out.  He wants me to consider fistula repair (possibly flap) rather than pouch removal - does not want me to burn my bridges.  I'm willing to listen to the surgeon about all possibilities.

I am still having drainage - blood and mucous or whatever, but it's manageable (cotton rounds are a fantastic invention!)  I don't get other infections:  uti or vaginal. The treatments for the fistula also were a boon to my jpouch:  I was put me on amoxicillin (tindamax and levaquin first, but developed side effects), canasa and HC enemas - my pouch has been behaving very well.  I've had no more abscesses; I take frequent sitz baths.  I no longer get fevers, headaches, etc. I could ALMOST live like this, however, there are too many limits:  my lower-body exercises cause the fistula to become much more active; I am unable to swim in pools (that would be rude!); marital relations are not possible, and I just don't like the idea of having the fistula in me, wondering if it could "get worse", or whatever.   So, back to Cleveland to talk to the surgeon ...

I'll update again after the consult in May - thanks again to all of you who provide information, support and kindness on these boards!

 

Hi Dinkley,
I am sure this is a weird manifestation of crohn's... I am having labia swelling on right side right now, this is the 3rd episode this year. At first the Dr's had no idea what it was, not a cyst, no infection, no fistula, not an allergy, pelvic MRI normal. Finally went to a Gynecologist who deal with many Crohn's patients, and she confirmed that it's just another unfortunate side effect of the disease.
I'm not surprised, I suffered with Iritis/Uvitis (painful swelling in backs of eyes) for 10 years before getting diagnosed with Crohn's. I take 2400mg Asacol 2x a day and Cipro for flare ups. My crohn's is moderate to severe on one side of colon.
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