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» 7 months since the diagnosis
Recently Diagnosed.... Help! EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
Recently Diagnosed.... Help! EmptySat Jun 15, 2019 5:21 pm by mary jane

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

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

» Dating with Vulvodynia and Vaginismus advice
Recently Diagnosed.... Help! EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Recently Diagnosed.... Help! EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Recently Diagnosed.... Help! 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


Recently Diagnosed.... Help!

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Recently Diagnosed.... Help! Empty Recently Diagnosed.... Help!

Post  leoscc on Mon Aug 14, 2017 10:00 pm

Hello everyone. I'm so happy I have found this page. I'm new so I am hoping this gets
posted to the right place, haha. Today I was diagnosed with provoked vulvodynia. I've been having painful intercourse for the last 1.5 years. Super burning, a lot of raw/irritation after, even ocassionally bleeding. The pain makes sex almost unbearable. Sometimes I can't at all. It's destroying my mentallity and my relationship with my boyfriend of 3 years. This never was an issue before and suddenly happened. He is very supportive but for me, as a once very sexual being, am super depressed. Luckily it's not as worse as some cases where you cannot walk or sit. I'm just so frustrated and sad that this has happened. I recently got over a 7 year struggle with anorexia. I am 21 and things finally have turned around for me, until this. I feel so doomed.

I feel it may have started with a yeast infection that I thought cleared up but never did. My gyn is putting me on a 6 month oral yeast treatment, and I'm hoping for results. He recommended antidepressants, but when I was sick with my eating disorder these were like deadly for me, so I am hesitant.

What do you guys do you help?? Will this ever get better/be normal again, or anchor I doomed? I just need some hope. I'm so distraught over this.

Side question: could birth control pills lead to this? I've tried switching brands and no help Sad

leoscc

Posts : 5
Join date : 2017-08-14

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Post  Hopeitworks on Mon Aug 14, 2017 10:20 pm

Hi,

I am sorry your going through this experience. It's not fair to any of us. Since you have provoked vulvodynia just get the surgery. You having provoked makes you an excellent candidate for the vestibuletcomy. None the meds every worked for me. I am still recovering from my vestibuletcomy but I already feel better than I did before. I have provoked and non- provoked.

Find yourself a specialist and do research to ensure they are good at dealing/treating Vulvodynia.

You probably don't have a yeast infection. When my symptoms first started they told me the same thing. Had be on yeast pills for 6 months and boric acid suppositories. Again none of that helped.

I'm glad your boyfriend is supportive during this struggling time in your life. That's the kind of guy you want to keep.

Please don't allow this condition to jeopardize how far you've come with your eating disorder.

If your going to take any meds I would take something for anxiety and maybe Gabapante.

We are here for you if you need us.

Hopeitworks

Posts : 36
Join date : 2017-08-01
Location : United States

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Recently Diagnosed.... Help! Empty Re: Recently Diagnosed.... Help!

Post  infinitelywondering on Mon Aug 14, 2017 10:31 pm

Hi there,

Please don't rush to get the surgery just yet. From what you've described, this pain hasn't always existed? Therefore, it sounds like you have secondary vulvodynia- where you've not had it all your life. I had primary, so since birth.

From my experience, people like me with primary have no massive options other than surgery, and even that hasn't got 100% success rates. I do believe that yours could be due to something else. It's incredibly likely it's down to the pill, perhaps try coming off it altogether for a while if you can?

Studies have shown that some women suffer due to the bath products they use, so you could just be badly allergic to something you are using in the shower. I'd try and reduce this if you can

I hope this helps- I'm no expert but believe me, the surgery is a big ordeal and it's definitely worth trying other things out first. Every woman is different so it's best o find something that works for you.

Please message me for any more help/advice or info if you need it x

infinitelywondering

Posts : 34
Join date : 2016-12-04

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Recently Diagnosed.... Help! Empty Re: Recently Diagnosed.... Help!

Post  leoscc on Mon Aug 14, 2017 10:53 pm

The thought of a surgery does intimidate me, especially due to my career field and my last year of school for my degree... but yes you are correct, it is secondary, which makes it all the more confusing and random for me. It's odd because I can use tampons comfortably for the most part, or even Monistat applicators. However, sex is just a no go and it is driving me nuts. Thank you so much for your advice though. It is just comforting to hear from other people. I've been on the pill for about 3 years. The first year or so we're completely fine, then this developed out of nowhere. I tried switching but it didn't need help. I've read that hormonal changes can contribute so I am willing to stop the pill completely... I do us every pH balanced soaps and wear cotton bottoms. It does help if I am sore afterwards but certainly isn't no the cure, haha. Thank you again.



infinitelywondering wrote:Hi there,

Please don't rush to get the surgery just yet. From what you've described, this pain hasn't always existed? Therefore, it sounds like you have secondary vulvodynia- where you've not had it all your life. I had primary, so since birth.

From my experience, people like me with primary have no massive options other than surgery, and even that hasn't got 100% success rates. I do believe that yours could be due to something else. It's incredibly likely it's down to the pill, perhaps try coming off it altogether for a while if you can?

Studies have shown that some women suffer due to the bath products they use, so you could just be badly allergic to something you are using in the shower. I'd try and reduce this if you can

I hope this helps- I'm no expert but believe me, the surgery is a big ordeal and it's definitely worth trying other things out first. Every woman is different so it's best o find something that works for you.

Please message me for any more help/advice or info if you need it x

leoscc

Posts : 5
Join date : 2017-08-14

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Recently Diagnosed.... Help! Empty Re: Recently Diagnosed.... Help!

Post  Hopeitworks on Mon Aug 14, 2017 10:56 pm

You may just need physical therapy. I wasn't born with vulvodynia. It started 10 years ago for no reason. But try PT I've hears it helps many.

Hopeitworks

Posts : 36
Join date : 2017-08-01
Location : United States

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Recently Diagnosed.... Help! Empty The Pill

Post  amyhp on Tue Aug 15, 2017 2:57 pm

The birth control pill is what caused my pain. I was perfectly fine, never experiencing pain for 20 years of my life, but then it all started once I went on the pill.

amyhp

Posts : 34
Join date : 2015-09-22

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