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

» Please tell me this can get better
London doctors EmptySat Jul 18, 2020 7:38 pm by sammykramer

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

» How I cured my Vulvodynia!
London doctors EmptySat Dec 07, 2019 11:54 am by Millie

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

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

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

» Help New Diagnosis
London doctors 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!
London doctors 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


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Post  mary jane Mon Nov 18, 2013 7:34 pm

I am very pissed with doctors in London. I must of had at least 10 different people stare up my private parts. All I got is a lot of lousy medication when in fact I have clear NERVE PAIN. MY privates feel like an electric fence and I am so scared it's PUDENDAL NEURALGIA. I'd rather have vulvodynia and vestibulitis combined, not PN!
I spent a small fortune to see some gyn via BMI healthcare, but he does not deal with vulvodynia, just vulval cancers. UGH!
MY only relief is 30 mg of Amitriptyline, but I still have pain with touch, I swear it's my previously operated bartholin gland that gives me this pain and just radiates it across the other side.
I have vibrations all over my vulva after touch occurs, I can barely wash the area, I also have stabbing and pins and needles, it is clearly NOT a skin problem, doctors can't see this, I need botox and trigger point injections, not biopsies!
I have vibrations in my right buttock and random knee and lower back pain.

I walk down the street and envy EVERYONE, I bet their privates don't hurt!!!

In other order of things, I have just ordered some enzyme which claims to help inflammation, nerve pain and autoimmune illnesses, it;'s called SERRAPEPTASE. I will report if it actually does something or not.
I am still taking the optibac for my yeast infection, because it is not helping my nerve pain.
mary jane
mary jane

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Join date : 2013-10-05
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Post  Kathy100 Tue Nov 19, 2013 10:44 am

Mary Jane, I know what you mean - I got to the point early this year where I was sick & tired of being prodded about by various drs & them saying inane things like "oh you're rather sore down there". er yes that's why I'm here. I've spent a small fortune on private health care too. But they have to run all the other tests to rule out certain things.
Have you seen a physio who is a pelvic floor specialist yet? Reason I'm asking is that you said your pain is radiating out into your buttock & lower back. I had this too & physio is helping me a lot. Sometimes the nerve pain can be caused because your pelvic floor muscles get really tight & spasm & this then spreads out into the other muscles such as you back. The pain specialist I saw said I could have PN but if I responded well to physio then it was more likely to be muscular & to try physio first before going down the nerve block route etc.

Kathy100

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Post  mary jane Tue Nov 19, 2013 11:08 am

@ Kathy you're right about the tight muscles, funny thing is I already had pretty severe vaginismus before this started, so now it's probably even worse!
I'd love to go to a physio, but my GP seems reluctant to do anything until a gyn gives some "orders".
I'm also really pissed they don't want to prescribe an extra drug like Lyrica for my pain
I am hoping to get an MRI soon though, that would be the first test I need Sad
mary jane
mary jane

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Post  Alana3 Tue Nov 19, 2013 12:28 pm

To make you feel better even in thr states some doctors dont know about this and have had a million docs look until finally I found someone. I have no idea the health.care over there but I say still be your own advocate until you find the right doctor. Sad sorry this is happening.to you tho

Alana3

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Post  mary jane Tue Nov 19, 2013 12:35 pm

@ alana I've been reading a blog called http://madpeach.blogspot.co.uk/ and it sums up pretty well what docs in the Us know about this condition Sad but then again, I bet most countries have issues with specialists for this Sad
sigh

maybe in the near future they will be opneing more vulval disease clinics, there are a lot of things that can go wrong down there !!
mary jane
mary jane

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Post  Kathy100 Tue Nov 19, 2013 12:44 pm

My GP was the same - once she put on ami & it was helping - she thought job done. When the pain spread she just said to double my meds (which didn't help at all). So I went to physio privately - the first one although I was told she was a pelvic pain specialist didn't help much. The one I'm seeing now though is really good. It's a long haul & you have to go through several drs, specialists etc before you find the right one.

Kathy100

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Post  Alana3 Tue Nov 19, 2013 12:47 pm

Oh yeah we do have specialists I go to one but not knowing what I was dealing with at first I thought any doctor would know how to cure me. Not true. So when I finally had a doctor tell me you have vulvodynia I googled a search for doctors who specialize but it took 7 years because I had docs say I can cure.you and.of course never did... its sad Sad but I did manage to find a good doc just took a ton of time but.hopefully it won't be that long for you. Just saying it happens here too I know its annoying Sad

Alana3

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