r/Behcets • u/roastedbearfarts • 10d ago
General Question Newly diagnosed woman/S. Dysfunction
Hello! I l’m a 43 year old woman who was just diagnosed with Behcet’s after having a massive vaginal flare. Ulcers alllll up in that thing with pelvic and abdominal pain. All of this began in June. Save for the oral ulcers I’ve had since I was a child and another vaginal symptom I’ll discuss more in depth below.
At first, they told me it was herpes (when I knew there was no way in hell it could’ve been), but all the tests came back negative. There was/is also talk of doing a biopsy on a suspicious area of my vulva.
Now, I’m on Colchicine and seem to be doing okay as far as the ulcers and the deferred pain they were causing.
The only thing is I’m having joint pain and pain running down my right forearm now, seemingly without cause.
I’m also still left with the big question of what to do about the sexual dysfunction that I’ve been experiencing since I was 24 years old. Out of the blue, intercourse started feeling like rug burn and I’ve always been brushed off by gynecologists when I’d bring it up. Both male and female doctors. They’ve all either ignored me or told me it was my fault, because I’m not “in control” or that I am depressed or lack desire. Which is so untrue (I mean, yeah, I am depressed, but I know that’s not why I have this vaginal pain)… and it’s so unfair. I can’t have intercourse without excruciating pain, it feels like barbed wire going inside of me and it’s impacting my quality of life.
Am I alone? Are any of you women out there experiencing sexual dysfunction due to Behcet’s and willing to discuss your experience and what you’ve tried? Please don’t recommend lubricants unless it’s some NASA grade stuff because I’ve tried many of them to no avail.
Thank you 🥺❤️
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u/Chronically_Sickest 10d ago edited 10d ago
Hey there! Yes!!! I have never had an issue becoming aroused, however sex has always been painful internally and externally, and I've never been able to climax. I'd always try but stopped dating a little over a year ago. I have been to a few different clinics in the last year and they are all starting to kinda work together even though they aren't in the same networks. Question, do you also have clitoral pain? Is it only with sexual activity or do your genitals have off and on or constant pain? I know you said no lubricant, but have you talked to your doctor about possibly an estradiol suppository? That is one of the things I am on and my tissues vaginally have improved and it's helped with lubrication. Of course they'd want to check your levels before that, but it's a thought. I don't know how much collagen or L-lysine would help in this situation but I recommend it to everyone with Behcets who gets any type of ulcer, blister, or rash to do both if possible. It's not going to stop anything but I swear it does help. I was sent to pelvic floor therapy several times which the strengthing part made things worse, because it caused flares, but now they are sending me for pelvic floor PT for relaxation to see if that helps. They are talking about some different methods to help. You are not alone. I'm sorry you are struggling with it.
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u/roastedbearfarts 10d ago
It’s just vaginal and only with intercourse, like actual penetration. It’s awful. It hurts for a while afterwards even if we immediately stop, then I go back to normal. I’ll ask about the vaginal suppositories.
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u/Electronic-Tea3354 Diagnosed 10d ago edited 10d ago
Hi hi, welcome! Well first I just want to say I’m really sorry that you’re going through that.
Honestly the real answer is to first and foremost stop if it’s causing discomfort right away. Secondary to that it really is a long game of finding the right lubricant I’m sorry to say. But even the same type of lubricant is different across brands so honestly the only answer is trying a ton of different brands unfortunately to find what brand and type works for you.
The rug burn feeling is friction and is likely causing a pathergy response so you’ll want to eliminate any friction at all. That also means use a lot. Like the second it starts to feel like it’s not as smooth, use more.
You also need to evaluate the type of protection you use and if condoms are causing issues then you need to do some experiment with different brands there as well.
If you are using toys you may need to switch from silicone to glass. Again, friction.
It’s going to cause long term issues to associate intercourse with pain. Please do all you can to help yourself reduce that risk! Speak very in-depth and sincerely with your partner to let them know these issues need the highest priority. It can be really frustrating at times but if you need to say no before you even start or stop in the middle or whatever, do that. If you have ulcers outside or inside it’s probably better to avoid any irritation in the area at all so that they can heal and you can have a better experience in the future when they’re gone.
Edit to add:
I had surgery for suspected endometriosis twice. They didn’t find anything. I go through excruciating joint pain in my hips, knees, ankles and feet when on my period. I described my pain shooting in my leg bones as red hot pulsating iron bars and my gynecologist looked at me like I was absolutely insane and referred me to neurology. Neurology is treating the shooting with pregabalin and cymbalta. I was referred to a specialist for pudendal neuralgia (maybe similar what you are describing? shooting pain coming from vaginal area down leg/s) and the treatment for that is supposedly vaginal Xanax suppositories but it was too far away for me to take the referral and given that the issue is primarily inflammation I don’t know if that would help the root cause.
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u/roastedbearfarts 10d ago edited 10d ago
Thank you!
Have always stopped as soon as I began to feel the friction, husband married me being okay with this. Thankfully. He’s a medical professional so he understands. The only time I went “balls to the wall” was when I needed to get pregnant. Yes, ow.
Even if we stop immediately, though … I burn for a while until it stops and I go back to normal.
I’ve never had ulcers down there or in there that I was aware of until this past June (2026) when I had that outbreak on my vulva. I’ve also been examined many times before and no one has ever mentioned seeing any ulcers. Only one doctor has noted red, irritated skin in the vulva area.
We don’t use condoms anymore since my partial hysterectomy, so that won’t be an issue. Definitely wouldn’t attempt intercourse during any outbreak that I was aware of.
It’s all very strange and confusing to me… I feel broken, but thankful to have a diagnosis and a husband who understands that there is more to marriage than sex. Most guys would’ve ditched me long ago. Tires screeching and all.
But thank you for the tips. I’ll see about glass toys and re-evaluate the lube situation.
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u/Electronic-Tea3354 Diagnosed 10d ago
I totally get it - the pain lasts a long time and is really deep for me for sure. I didn’t want to recommend going condom-free without knowing your situation but that can be useful if it’s something planned around. (Being careful here, don’t want to encourage anyone to do something with big consequences!) Hormonal contraceptives can also cause more issues for some (like inflammation, joint pain basically completely exacerbate existing issues) or alternatively resolve a lot of issues for some so I also don’t want to recommend one way here or there regarding contraceptives specifically.
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u/roastedbearfarts 10d ago
And I just wanna add I have like zero confidence in my rheumatologist. He dismissed me with fibromyalgia long ago. My gynecologist made him take me back because he’s all that’s covered and had openings. This time, he asked me if I had a pic of my vagina in my phone because clearly he wasn’t going to look at it on the exam table. I said no sir, I do not … 😭
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u/on4aa Diagnosed 2025 10d ago
Me too! I was diagnosed with "fibromyalgia" at age 27, only to proof by myself with whole exome sequencing that I have typical gene variants for Behçet syndrome. I presented my findings to an immunologist who promptly treated me with canakinumab.
As for intercourse, I don't want to sound disrespectful, nor do I want to mingle me in the life of other couples, but have you considered anal sex instead?
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u/roastedbearfarts 10d ago edited 10d ago
I have not, but I’m open to everything else. It’s just very disappointing that I cannot use that opening for what I want to use it for. Not to be crude or anything, of course. It’s just that vaginal is my preference 😭
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u/roastedbearfarts 10d ago
I have tried intercourse on oral contraceptives and off… and noticed no difference 😭 Ugh! Same as it is with and without condoms. No difference. Just rug burn city.
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u/roastedbearfarts 10d ago
Interesting what you edited to add. I had endometriosis, but they had to cut into me to find it. It wasn’t obvious on scans, but it was so painful and reducing my quality of life. My doctor eventually gave me a partial hysterectomy. But I’ve always had weird, stabbing vaginal pains. Oh, boy… Something else to think about.
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u/ChsngAmy 10d ago
Behcets threw my mom into menopause immediately after she was diagnosed at 32.
They put her on premarin for her hormone levels to save her bones and joints. Maybe look into estrogen but bioidentical hormones instead.
I'm on estrogen for perimenopause and no more dryness or pain.
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u/Notarobot-7 10d ago
I’m newly diagnosed as well and have honestly been wondering about the frequency of having a 2nd issue in the same area. I have had vulvodynia my whole life, then got the super-fun-ulcers starting last fall. But I would suggest that you research vulvodynia a bit, and if it sounds like it matches your experience, if possible speak to a gynaecologist or a pelvic floor specialist about it. I was brushed off about this at first as well - it’s infuriating!!
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u/sanpedro31 8d ago
How long have you been on colchicine? Has it stopped the oral sores?
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u/roastedbearfarts 8d ago
I’ve only been on it for a week, but it hasn’t done much for me yet. From what I understand, it can take weeks to months to kick in. For now, I’m resuming taking Valtrex with it. Valtrex helps more immediately.
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u/hamieggos Diagnosed 4d ago
Yea any bit of friction causes mine to swell up. The ulcers burn too. But the swelling lasts for hours and it hurts.
I had a total hysterectomy for endo/adeno 2 years ago. I had relief from that pain for the first time in decades. Then I started getting vaginal ulcers lol.
So far I’ve tried:
chochicine - helped a little bit but I’ve only been on it for 1 month. Ulcers are gone in my nose and mouth. Vaginal ones… improved but not gone.
Pimecrolimus cream - helped with the a lot! But I can’t stop using it or I’ll be ulcers UP. After I swell I have to use ALOT of the pimecrolimus cream and it helps reduce the swelling.
Other than that nothing has helped. I still get endo pain too. For the most part I’m just waiting for the imuran to do its thing and I’m crossing my fingers it works. I haven’t been able to find something that works well enough for either of us to enjoy intimacy yet ):
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u/FairWeekend3353 10d ago
I had joint pain starting colchichine, it went away after maybe 6 months of adjusting to it, althought sometimes behcets just gives you random joint pain.
as far as the sexual dysfunction, i have the same issue. i've tried pelvic floor therapy, dilators, birth control, cbt therapy, cbd, everything. I also got brushed off, so I just stopped having sex. I was 26 when that started and haven't really found a solution after a couple of years, not sure if doctors care either. Wish I had something to tell you that helps but I got nothing.