Vulvodynia Support
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» Hope to all my suffering ladies
Do you know what your "cause" is? - Page 2 EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Do you know what your "cause" is? - Page 2 EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Do you know what your "cause" is? - Page 2 EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Do you know what your "cause" is? - Page 2 EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Do you know what your "cause" is? - Page 2 EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Do you know what your "cause" is? - Page 2 EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Do you know what your "cause" is? - Page 2 EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Do you know what your "cause" is? - Page 2 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!
Do you know what your "cause" is? - Page 2 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


Do you know what your "cause" is?

+9
Sarah001
Loulou
julieannboo
carby148
michelle21
Applejax
cba321
jen007
Kathye10
13 posters

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Post  Sarah001 Tue May 07, 2013 5:57 pm

With me it was very, very obvious, my pelvis has been severely unstable for 9 years due to another condition and my V started after a physio had me use extra pelvic floor activity during exercise in an attempt to gain some stability, it didn't work and left me with V so an additional problem for the last 3 years of the 9. After being silly and doing as you say "fighting symptoms" I finally went to a women's health physio who checked my resting tone, 2 or below is normal, some women can have problems at 5 and around 15 was the highest she'd seen in 30 years so my resting tone of 20 that crept up to 29 when I was totally relaxed talking to her was a bit of a giveaway too! Because of my other condition I have to be very careful and can't have my pelvic floor released yet so I'm not a good example of typical PFD. I do find relaxing the pelvic floor helps my V though and clenching makes it much worse so again pretty obvious with me! Physio is a longterm situation so some women would be fine after a couple of months and others take much longer, the only way to know if you should stick with it is if there is still some trigger points and spasm to release and/or areas to realign and stabilise. Only a trained physio would be able to tell you if those problems exist on you and it really is worth going to one and finding out.
Sarah001
Sarah001

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Age : 50
Location : UK

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Post  juleps Tue May 07, 2013 7:21 pm

thanks for taking your time!
i also had pysio but it seems not to help me so well, although i also have to admit it is hard to find time forall the exercises al the time. but my physio concluded that i seemto have no issues to relax my muscles and it seems to be the skin.
now i dont know if i should just be more patient or assume that is not my ideal treatment.

juleps

Posts : 14
Join date : 2013-05-03

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Post  Kathy100 Wed May 08, 2013 10:47 am

Hi Juleps

I'm having physio at the moment too as I do have issues relaxing my muscles. Earlier on I went to see a vulval dermatologist to check whether it was a skin problem. For me it wasn't, so the next thing to try was physio. I think Sarah is right you have to know the cause so you can find the treatment that's the right one for you. Unfortunately this can take loads of time (and money). If you haven't already it may be worth seeing a dermatologist to check whether it is a skin problem. Good luck.

Kathy100

Posts : 95
Join date : 2012-12-17

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Post  Kathye10 Wed May 08, 2013 2:29 pm

Hi Girls,

I agree with Kathy, seeing a derm will definitely rule out certain skin problems and the biospy isn't that bad. If you can afford it, DO IT! Very Happy

I had a vulvar biopsy done. At the time I had folliculitus so it showed that I had that, and some other type of inflammation but no word on what it was. They ruled out skin diseases, so who knows. The process like you said, is lengthy, expensive and frustrating as hell. I'm seeing a PT on the 20th to rule out PFD. I have a feeling the muscles have a lot to do with it.
Kathye10
Kathye10

Posts : 82
Join date : 2013-02-18
Location : Los Angeles

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Post  Alana3 Wed May 08, 2013 3:11 pm

I saw a vulvar specialist, best thing going, expensive as hell, but so worth it in the end! If you can find one you should go seriously Smile

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  juleps Wed May 08, 2013 4:41 pm

ok so a dermatologist?
what and how do they tests things?
does anyone actually have the skin as the issue as the seems for most people it´s muscles?!

juleps

Posts : 14
Join date : 2013-05-03

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Post  Alana3 Wed May 08, 2013 5:11 pm

Mine was skin and nerves once I had the surgery I was fine but no dermatologist is going to be able to diagnose vv unless they're specializing in vulva issues

Alana3

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Post  Kathye10 Wed May 08, 2013 7:07 pm

They will need to biopsy a piece of your skin. Some ladies have this due to a skin condition, others bacterial/yeast issues, others pelvic muscle probs, etc. Try and find a derm that specializes in the vulva.
Kathye10
Kathye10

Posts : 82
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Location : Los Angeles

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Post  Sarah001 Wed May 08, 2013 7:08 pm

I saw a vulvar dermatologist, there are a handful in the uk and they travel around the hospitals and run one clinic a month in several they cover so yes there are vulvar dermatologists out there and they also deal with prescribing pain meds for V too if it turns out not to be a dermatological issue. A biopsy is a possibility when you see one but it depends what there is to see.
Sarah001
Sarah001

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Post  Kathy100 Thu May 09, 2013 10:42 am

Mine examined me but didn't do a biopsy as she said the skin was healthy.

Kathy100

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Post  Ridgwell Sat Jun 08, 2013 1:15 pm

When the pain started for me during sex I just kept saying it would fade that it was just an odd circumstance that wouldn't last. Weeks of this I finally went to the doctor who told me I had thrush which I treated and the first time I had sex afterwards the pain was gone. Then next time it was back. I went back to the doctor and had multiple tests again an everything came back clear and so I was sent away. This happened with multiple doctors and the pain continued until I was finally diagnosed with vulvodynia. As they say the cause is often unknown, but I think the cause for myself may have been the thrush

Ridgwell

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