Vulvodynia...?

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pantaleon
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 2/14/2009 2:35 AM (GMT -7)   
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!

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 2/14/2009 6:59 AM (GMT -7)   
Hi Pantaleon,

I knew a woman that had this once. She was just as frustrated. I didn't know her well, so I don't know her outcome. I only know that her partner was very patient and supportive and that she was getting treatment and that it WAS GETTING BETTER. She was seeing a gynocologist. I'm surprised that any gyn can't help with this matter.

Hang in there honey. Things will get better. Keep being active on the search for help and I'm sure you will find a treatment. I don't remember what this woman had, I think it was some sort of surgical intervention, but I can't be sure.

Anyway, I will be praying for you for sure. Keep us posted OK? To let us know how you are doing.

Gentle hugs.

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 2/14/2009 7:07 AM (GMT -7)   
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
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 2/14/2009 7:09 AM (GMT -7)   
Yes, good idea Marlee and yes I agree, don't you give up!!

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 2/14/2009 11:22 AM (GMT -7)   
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! wink

Take care and I hope you feel comfortable enough to email me. yeah
FINALLY dxd with fibro on 06/13/08
Neurontin, Ibuprofen for pain-which doesn't help
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Aciphex for reflux
Quit smoking 08/29/08 (used Chantix)
 
"I'll take the Chivas instead"
-Kelly Clarkson


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 2/14/2009 10:41 PM (GMT -7)   

Pantaleon - I know a gal your age who is dealing with this as well.  You might want to check out the following website.  It's very informative and answers questions in detail.  The good news is that there are answers and it can get better.  Hang in there.

http://www.vulvodynia.com/faq.htm


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


daytripper18
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/19/2009 5:23 PM (GMT -7)   

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... eyes 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


helpingdad
New Member


Date Joined Dec 2010
Total Posts : 5
   Posted 12/30/2010 3:20 AM (GMT -7)   
Hey there.
I know this was from last year, but did anyone ever get help for this?
Ive been diagnosed and can offer a lot of advice if needed.

Meems2003
New Member


Date Joined Jun 2012
Total Posts : 2
   Posted 6/3/2012 6:38 AM (GMT -7)   
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
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