Vulvodynia Support
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» Hope to all my suffering ladies
Diagnosed Yesterday :( EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Diagnosed Yesterday :( EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Diagnosed Yesterday :( EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Diagnosed Yesterday :( EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Diagnosed Yesterday :( EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Diagnosed Yesterday :( EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Diagnosed Yesterday :( EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Diagnosed Yesterday :( EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Diagnosed Yesterday :( EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Diagnosed Yesterday :(

3 posters

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Post  xpanianiax 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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Join date : 2013-03-08

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Post  jen007 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

jen007

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Post  xpanianiax 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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Post  Alana3 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 :/

Alana3

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Post  jen007 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

jen007

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Post  xpanianiax 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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Post  jen007 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

jen007

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