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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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Diagnosed Yesterday :(

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Diagnosed Yesterday :(

Post  xpanianiax on Fri Mar 08, 2013 9:26 pm

Greetings All,

After a follow up with my second-opinion gynecologist I was just diagnosed with vulvodynia and started on 75 mg of Elavil (amitriptyline). After literally hours of on-line research, unable to concentrate on much else, I figured I would reach out to get some much needed support.

It all began with a stupid accident on November 30, 2012. In the heat of the moment, I soaped up in the shower - a definite no-no for me as this had caused yeast infections in the past - and bam, yeast infection. For a month I tried home remedies, which had cleared it up in the past better than all the Monistat, Diflucan, etc. However, this time I just could not shake the darned thing. I went to my gynecologist who did a culture and found that while the yeast was gone I now had bacterial vaginosis - something I had never had before. I was prescribed a course of Clindamycin to clear up the bacterial vaginosis and Fluconazole to prevent the recurrence of the yeasties. The prescribed week went by and I felt a bit better, but I was still itchy and sort of raw feeling so the doctor prescribed another round of Clindamycin and Fluconazole saying that sometimes with these resistant infections another round is required.

Fast forward another week, still nothing. The occasional twingy itchiness and raw feeling is still there - somewhat less, but still there. So off to the doctor again. After being poked and prodded and being tested again for all the usual STDs, including herpes due to a questionable looking spot (which turned out to be simply irritated), the tests came back with no more yeast, no more bacterial vaginosis. However, the doctor said that I had unusually high levels of strep B and suggested that that might be causing the irritation and prescribed Amoxicillin, Fluconazole, and Nystatin/Triamcinolone. That didn't work either so I was put on Metronidazole because the doctor and midwife though that the bacterial vaginosis could still be there. That ended up making it worse so they told me to go off everything.

Finally, after going off everything, including the Nuvaring, I went to get a second opinion - three months after the initial onset of the problem. Initially the doctor, who according to her biography on the internet has a special interest in vulvar disorders, thought that it might be lichen and put me on clobetasol (sp?). That seemed to help a bit, but that very day, before even applying the clobetasol the pain/irritation migrated further south so to speak and my perineal area and butt crack, for lack of a better term, were burning. The clobetasol seems to reduce the irritation and swelling of my vulva, but did not really do anything for the butt crack symptoms and I felt as though I had a heating pad on high between my butt checks. Two weeks later, I go back for my follow up and am told that the complete vaginal panel that was run shows no yeast or troublesome bacteria, and that my ph is fine. The doctor then did the q-tip test, which really didn't feel like much of anything - no pain or irritation or anything, just the prodding of the q-tip. And she proceeds to tell me that she suspects that I have vulvodynia and prescribes the Elavil (amitriptyline) - as I told her that I have been having panic attacks and that it is severely affecting my quality of life.

Now, my question here is, does anyone else have symptoms that are primarily in the perineal / butt crack area? I mean sitting sometimes feels like my butt is going to split apart down the middle. For the most part, I don't seem to have any vaginal symptoms - although I haven't tried sex yet, burning sensations don't really put one in the mood, and I don't really have any vulvar symptoms, apart from an occasional prickly feeling. Part of me is wondering if the diagnosis is correct....

I am SO devastated by this diagnosis. I'm only 30 years old, and my husband and I just started talking about kids. Now, we can't even have sex - maybe we can, but I'm afraid to even try. And all the internet research hasn't helped things one bit, there doesn't seem to be too much information out there about success stories - all I seem to see is page after page after page of long and drawn out stories of suffering. Sometimes, I just wish that God would strike me down dead because I don't know how I'm going to be able to deal with this...

xpanianiax

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Re: Diagnosed Yesterday :(

Post  jen007 on Fri Mar 08, 2013 11:30 pm

Hi xpanianiax,

From what you said here I would say it's best to find another opinion from another doctor. I took me about 5 to get it right. I also recommend trying to have sex. You'll know for sure if you have vulvodynia if you have painful sex. Is your pain internal or external? It is provoked or unprovoked? The answers to these questions can help me better understand your situation. I've have provoked vestibuldynia for 5 years now. I guess you could call me a success story because I no longer have pain. I had surgery this past summer. It was a total last resort and I tried pretty much everything before deciding surgery was right for me. I took amitriptyline for about 6 months about 2 or 3 years ago. It did help reduce the pain, but I still had muscle tightness that caused me pain. I was going to try physical therapy, but my muscles were so tight I was afraid of the pain it would cause. Also I did have the burning sensation you mentioned below...in the perennial area. I constantly had burning around my vulva and on my perineum. It was awful. One thing that helped me was changing my underwear over to 100% cotton. It keeps the yeast away and also keeps your area vented. Also try using a non-scented soap when cleaning down there. Another ting to try is putting some lubricant on your perennial area or even some coconut oil. It could be irritated from you skin rubbing together. I'd also look into anal fissures. I know it's gross, but that could be the issue...which is easily fixable.

I'm not sure if you have vulvodynia, but I'd still keep looking for the right specialist. Usually a spot on sign of vulvodynia is chronic yeast infections or redness on the vulva.

Stay strong!

-Jen

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Re: Diagnosed Yesterday :(

Post  xpanianiax on Tue Mar 12, 2013 1:04 pm

Hi Jen007,

After 3 months of no sex, my husband and I tried on Saturday and had absolutely NO problems. I produced enough lubrication, and after the initial tightness from not doing that in months, everything was wonderfully pain free. However, I do have a strange vaginal tickle now, but who knows, that could be due to the fact that I just started my period - my normal one after going off of birth control.

I am set to have another follow up with my second opinion doctor in about a month, but before that I'm going to see my primary care doctor this week. I am beginning to suspect that I may not have vulvodynia after all. Maybe it is anal fissures, or an internal hemorrhoid or something? The pain seems to move around quite a bit - for example Friday I had a horribly burny butt crack - for lack of a better word, almost no symptoms on Saturday, or Sunday, pain in the perianal/anal region on Monday - which seemed to subside after going #2 (sorry for the TMI), and today, a burny/itchy feeling at the base of the butt crack, and an inner vaginal tickle. Who knows what the heck is going on Sad

I think the sex might have thrown something out of whack, because before it there wasn't any internal itchiness and now there is.

As to internal or external pain - prior to the sex, the pain was only external mostly around the perineum and butt crack. As to whether it was provoked or not, I believe it was unprovoked because I could touch the area and not make the pain any worse, and the Dr.'s Q-tip test didn't feel like anything out of the ordinary.

All of my underwear was already 100% cotton, and I have recently swapped to all white at the advice of the Dr. I haven't used soap for cleaning my nether bits in ages, as that has provoked yeast infections in the past. I have a bit of a history of yeast infections, because in college I must have gotten about four - due to being on antibiotics, but as soon as I stopped those the problems stopped. And then I remember getting another one about four years ago, plus this latest one from November. That being said, I'm not sure whether or not I fall under the chronic yeast infection sufferer category.

I can't believe how incredibly hard it is to find a specialist who seems the slightest bit knowledgeable about this condition. My regular gynecologist I have realized is more of an obstetrician, and didn't have a clue. My second opinion gynecologist seemed to be more well versed, but still - I don't know. It's not like I live in the sticks, the Chicagoland area is big enough that there should be more specialist options, but I'm having a REALLY hard time finding them.

xpanianiax

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Re: Diagnosed Yesterday :(

Post  Alana3 on Tue Mar 12, 2013 1:13 pm

Just to let you know, there are periods of remission, I had a wonderful sex life, then painful sex, then it was fine again, who knows you may not have vulvodynia, in which case you're lucky, but be warned it could come back :/

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Re: Diagnosed Yesterday :(

Post  jen007 on Tue Mar 12, 2013 3:19 pm

xpanianiax,

Good to hear someone is having pain free sex Very Happy . Something I thought of as I was reading your response was that maybe you're allergic to latex condoms...that is if you're using them. I've had an anal fissure before that caused issues for me in the "down there" region. My doctor prescribed me a cream that healed it all up. I know this gross, but do you have constipation issues? That could be causing some of the discomfort too. Also are your areas close together? For me, I'm very tiny so my anus is very close to my perineum...more so now that I had surgery. The closeness could be causing the mix up between vulvodynia and something else. Something that most doctors prescribe to vulvodynia patients is 5% lidocaine cream. It temporarily numbs the area you apply it to, but It only lasts for a little while, but it helps calm down the initial pain. Maybe your doctor will have you get some to put on your itchy painful areas.

-Jen

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Re: Diagnosed Yesterday :(

Post  xpanianiax on Tue Mar 12, 2013 5:55 pm

Jen,

Thanks for the response. It's so nice to know that there are people out there who care and who understand what I'm going through. Smile

As far as latex goes, I highly doubt that's the issue since I used them in the past with no problem and haven't used them for years due to the whole monogamous marriage thing.

I suspect that part of the problem might be anal/rectal/whatever you call it. I developed a hemorrhoid back in October, before this whole mess began, and while it's gone away for the most part it does come back from time to time and I just kind of pop it back in - gross I know. I eat ridiculously healthy, and try to consume enough fluids, but it would appear that that sucker is there to stay. I suspect that it might be aggravated on the inside or something because when I'm sitting and notice the anal/rectal pain, it's on the same side as the hemorrhoid. Like I said though, I'm going to see my primary care doctor on Thursday, so maybe she can refer me to a butt-doctor. Sounds like SUPER fun stuff Rolling Eyes

As to the anal fissure, last week, during my visit with my second opinion doctor she checked me out all over - including the buttsy nether regions - since I was complaining more about those and didn't notice anything. Does one need to go to a specialist in order to be diagnosed with those, or is that something that she could have caught?

Ugh, this is all SO frustrating. Crying or Very sad

xpanianiax

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Re: Diagnosed Yesterday :(

Post  jen007 on Tue Mar 12, 2013 8:56 pm

xpanianiax,

I would think a primary doctor would be able to notice something like that, but I'm not 100% sure. I had one a few years back. At the time I didn't know what was wrong with me and when I went to the bathroom all blood came out. I was so freaked I went to the ER. I was examined by a doctor there. So embarrassing. It cleared up after a few days or so.

I hope all gets resolved and hopefully you don't have vulvodynia after all, but if you do we're all here to help you get through! Please keep us posted on your progress Very Happy

-Jen

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Re: Diagnosed Yesterday :(

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