Vulvodynia...?

I'm not sure if this is an OK topic for the forum (sorry mods if it isn't) but I've been having some, erm, "woman problems." I recently started trying (please note the deliberate word choice here) to have sex with my boyfriend of 3 years. Yes, he wins the Patience Award. The thing is, I get this awful burning/chafing/stinging feeling whenever we try. It's pretty localized to the area around the opening, or maybe just inside. He thought it was just "tightness" that would go away with time, but the area actually hurts like crazy when it's just touched at all, not even stretched or chafed. This has been going on for months, possibly years (I always used to scream during pelvic exams, I was under the impression that they hurt everyone like crazy and am just beginning to realize that that's not the case with most women...). The mighty internet tells me this is probably vulvar vestibulitis, which seems to be common in people with fibro but not really understood or recognized by doctors.

I guess basically I'm not sure what to do about this. I'm in school out in CA; my doctor, who thinks I'm a complete hypochondriac who just needs to "stop being hypersensitive about pain" would need to send an out-of-state referral to a doctor out here if I wanted to see someone outside of the campus emergency care system. Rough calculations tell me it would be easier to wrestle approximately half a dozen alligators than get this one doc in a HUGE, ridiculously inefficient hospital system to send a referral. We're talking major red tape and literally hours and hours on hold with mean-natured secretaries to get these things sorted out. It kind of sounds like there are no real treatments for this vestibulitis anyways. So I'll see a nurse practitioner here on campus in the meantime, but I sincerely doubt they will be able to help and it will be realistically maybe 2 months or so before I can see a doctor in an off-campus practice or clinic.

So I guess basically I'm wondering what to do after whatever doctor I see inevitably turns out to be unconcerned and unhelpful. I've seen ads from specific doctors on the web who specialize in this, but none are in my area (SF Bay area) and I'm afraid of being suckered into something and ripped off. I also hear that topical anesthetics, prescription estrogen creams and possibly some kind of surgery can help, but I'm not sure how to get the ball rolling on any of these things.

I'm really, really frustrated and super-depressed about this, as you can probably tell from the angsty cynicism of my post (I'm 23 years old and can't have sex??? Like, ever??? fibro, haven't you screwed me over enough???) and have absolutely no idea what to do. I would really appreciate any advice/information/whatever that people are comfortable sharing. Thanks!

It sounds like you need a very understanding female Gyno. The reason I say this is cause my best friend from high school has dealt with it all her adult life and you wouldn't believe some of the advice male Gynos has given her. She gave up trying to get help long ago but don't you do that. One theory is yeast so have you been checked for that??? Maybe you can call around to find a doc first that treats it and then jump through all the hoops to get a referral to that doc.

 

luv and hugs

Marlee

pantaleon,

I'm happy that you felt comfortable enough to talk about your problem here. I do have some suggestions, but most of the time I'm too blunt, so it probably wouldn't be right to talk about them here. If you want to, you can email me (just click on the envelope under my name). I'm pretty open and honest about any topic, so please don't feel embarrassed about your questions. I always say that you can't shock me. LOL-so far, I haven't been shocked!

Take care and I hope you feel comfortable enough to email me.

Hi! I'm new here and would like to reply...I have vestibulitis and vulvodynia and this happens, especially when I feel a fatigue flare-up (although I've never been diagnosed officially...). Exams are the worst. Upon my first one, I jumped back so far that the doctor almost laughed at me and patronizingly asked "Have you ever had an exam before?" No, he wouldn't understand would he? Men... It was excruciating.

Also, most times sex is fine for me. But over the last few days, it has been very difficult for me. I get the burning you described. Sometimes I plow through it and after a bit, it's ok, not great, but tolerable, and I can enjoy it. Sometimes it's just impossible and I have to stop, ahem...mid-attempt. Right now I am having a very bad flare-up and believe that was the cause of the burning. I was also having UTI symptoms. It's getting better now.

It's hard to find a doctor who understands but they're out there so don't settle and don't give up.

Melissa

http://cvvd.org/pantaleon said...
I'm not sure if this is an OK topic for the forum (sorry mods if it isn't) but I've been having some, erm, "woman problems." I recently started trying (please note the deliberate word choice here) to have sex with my boyfriend of 3 years. Yes, he wins the Patience Award. The thing is, I get this awful burning/chafing/stinging feeling whenever we try. It's pretty localized to the area around the opening, or maybe just inside. He thought it was just "tightness" that would go away with time, but the area actually hurts like crazy when it's just touched at all, not even stretched or chafed. This has been going on for months, possibly years (I always used to scream during pelvic exams, I was under the impression that they hurt everyone like crazy and am just beginning to realize that that's not the case with most women...). The mighty internet tells me this is probably vulvar vestibulitis, which seems to be common in people with fibro but not really understood or recognized by doctors.

I guess basically I'm not sure what to do about this. I'm in school out in CA; my doctor, who thinks I'm a complete hypochondriac who just needs to "stop being hypersensitive about pain" would need to send an out-of-state referral to a doctor out here if I wanted to see someone outside of the campus emergency care system. Rough calculations tell me it would be easier to wrestle approximately half a dozen alligators than get this one doc in a HUGE, ridiculously inefficient hospital system to send a referral. We're talking major red tape and literally hours and hours on hold with mean-natured secretaries to get these things sorted out. It kind of sounds like there are no real treatments for this vestibulitis anyways. So I'll see a nurse practitioner here on campus in the meantime, but I sincerely doubt they will be able to help and it will be realistically maybe 2 months or so before I can see a doctor in an off-campus practice or clinic.

So I guess basically I'm wondering what to do after whatever doctor I see inevitably turns out to be unconcerned and unhelpful. I've seen ads from specific doctors on the web who specialize in this, but none are in my area (SF Bay area) and I'm afraid of being suckered into something and ripped off. I also hear that topical anesthetics, prescription estrogen creams and possibly some kind of surgery can help, but I'm not sure how to get the ball rolling on any of these things.

I'm really, really frustrated and super-depressed about this, as you can probably tell from the angsty cynicism of my post (I'm 23 years old and can't have sex??? Like, ever??? fibro, haven't you screwed me over enough???) and have absolutely no idea what to do. I would really appreciate any advice/information/whatever that people are comfortable sharing. Thanks!

please see my posting from 6/1/12--there is help http://cvvd.org/ for starters and you can get relief! -Meems2003