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

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

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

» Help New Diagnosis
vulvodynia 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!
vulvodynia EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
vulvodynia EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
vulvodynia EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
vulvodynia EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
vulvodynia EmptyMon Apr 08, 2019 7:54 am by Jo44

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


vulvodynia

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vulvodynia Empty vulvodynia

Post  owlcity on Tue Aug 05, 2014 8:44 am

I've bee recently diagnosted with vulvodynia. I had my first UTI and that was probably the trigger for me. I started using estrace topical cream and at first it didn't help at all. After few weeks i actually had one month with no pain or burning. I almost forgot that i have a "problem". The lastfew days the burning is back on and off, maybe not as bad as before. I don't know if i should ask my obgyn to give me a new prescription of estrace mixed with progesteron this time. I am getting close to being menopausal I suppose and my hormomes are pretty low. I can tolerate some burning but I never know what the next hour is going to bring. I am a nurse working in the hopital. I have pretty sick patients to take care of and I can't worry about how I feel. I am worried about taking amitryptyline or gabapentin. I can"t afford to be sleepy for hours at the time or quit my job, I am the only one working in my household. Anybody tried other things that worked? Does anybody know if EMUAID cream ever works? Big advertisement on line for it, hard to tell if it's a scam or it's worth the money.
Thank you all and i hope they come up with a cure. None of us deserve this:(

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vulvodynia Empty Re: vulvodynia

Post  sailor_moon on Tue Aug 05, 2014 8:45 pm

Do you have any other symtoms besides the vulvodynia?

Have the doctors done a blood test over a 4 week period, doing a blood test every week to see what your hormones are actually doing?
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Post  owlcity on Wed Aug 06, 2014 8:50 am

Thanks for answering. No symptoms other then burning/stinging/pain. Mostly burning. My doc siad that vaginal dryness is common when you're 50 and most likely my hormons are low. I never actually had any blood tests. I'm pretty familiar with most nursing area expect obgyn/mother-baby/labor and delivery. Maybe I shoud ask my doctor to run some tests? I do seem to have the "classical" symptoms of vulvodynia. Grrrr! My life was so perfect before, I should've appreciate it more! We never do I guess. I dont expect a cure (wouldn't that be nice), just acceptable level of discomfort. I'm so demoralized right now, all I'm reading is that you may have this conidion for years! OMG! Years? I don't think I can take it for fow months let alone years. Thank you so much again for answering.

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vulvodynia Empty Re: vulvodynia

Post  sailor_moon on Wed Aug 06, 2014 9:13 am

I'm only 26 and have had this sh*t for 14 months now. I totally get what you mean about having a wonderful life before Sad it makes me so sad.

I am only just seeing a doctor who knows what he's doing now, after 14 months of dealing with incompetent doctors who just wanted to put me on antidepressants and send me to councilling!

I have a lot of other symptoms accompanying my problem, which may or may not be related.

Many women with vulvodynia have other hormonal issues that the patient doesn't even pick up on until things get REALLY bad. I didn't pick up on my other symptoms at first until they escalated to extremes because I was so wrapped up and focused on my vulva, I was ignorant of all the other symptoms I was expiriencing, even though they all started at the same time (and the doctors were fobbing off my other symptoms as stress...ummm extremely sore breasts are not caused by stress!)

It wouldn't hurt to have blood tests, especially with the way you are saying about your response to hormones. And low hormone levels are suspected already, so it can't hurt! At least you will be ruling it out. It may not give you an answer, but it may!

I work in a pharmacy and one woman has suffered vulvadynia due to lack of estrogen. She uses estrogen cream and is on HRT and it fixed the problem. Another lady was experiencing vulvodynia-like symptoms because she had no testosterone in her body. She gets testosterone shots now and the problem is fixed. Lack of iron can cause vulva issues.....oh the list goes on!

It is up to you to decide what action you want to take, but if you are anything like me, you would do anything to be rid of this horrific condition.

The women on this site are awesome, I have gotten some very valuable information from this site, and the ladies are awesome to chat to for advice.




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vulvodynia Empty Re: vulvodynia

Post  zarli on Wed Aug 06, 2014 9:21 am

Hi maybe you should seek the care of a specialist such as a vulva pain specialist. Don't worry about having it for years everybody is different yours could settle down once you hit a different stage of menopause. On forums they are great but they are just some of the stories of vulvodynia. People who beat it are not necessarily represented on here properly. Stay positive Smile

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Post  sailor_moon on Wed Aug 06, 2014 9:27 am

I agree with Zarli, try and seek out a specialist that deals with Vulvodynia Smile
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vulvodynia Empty Re: vulvodynia

Post  bearferret on Tue Aug 19, 2014 6:12 pm

Ive been on Amitryptilin for three months and am now pain free, I took it at night before bed so didnt get sleepy during the day. Ive also taken Gabapentin for my back, not that did make me sleeping other times during the day even if I just took it at night. I am pleased with the result of Amitryptilin and would take it again if it flared up again, hoping it doesnt.

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vulvodynia Empty Re: vulvodynia

Post  Alana3 on Tue Aug 19, 2014 6:51 pm

I beat it! But it is true most people who did beat it really don't come back on here.  I had mine about 7 years before I got my fix!  And I def recommend going to a vuvla specialist!

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vulvodynia Empty Re: vulvodynia

Post  kpog on Tue Jan 10, 2017 1:09 am

This post is to sailor_moon. Hoping you are still on this thread. I also have vulvodynia and very sore breasts. Wondering if your issue turned out to be hormonal? What treatments have you tried and did anything work for you?

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