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

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

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

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

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

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

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

» Help New Diagnosis
PLEASE READ 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!
PLEASE READ 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  katie220 Wed Mar 20, 2013 5:51 pm

Hey everyone, I just wanted to ask you all a few questions about whats going on with me. My pain has been the same around three years. The pain gets better around the first day of my cycle and then progressively gets worse towards the luteal phase. Sometimes I can have sex and sometimes I can't. The strange thing is that the pain is mainly on the right side of my vagina. Docotors always told me I had a bacteria problem but no anti biotic ever helped. It doesn't make sense because if I had a nerve problem then why would the pain get better at times? I am really frustrated. Another odd thing is that if I take xanax the pain level goes down. Also, if I drink baking soda and water the burn on urination will go away. I am just really worried that this will turn into full blown constant pain and it will be all my fault. Can someone who has had this for awhile give me some advice?

katie220

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Join date : 2012-09-30

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Post  Alana3 Wed Mar 20, 2013 6:11 pm

Mine always got worse before my period, and mine is worse on the right too. You could possibly have a muscle spasm on the right side which makes it uncomfortable. I had surgery in December and my probelm disappeared except for the muscles, which is a work in progress. If you take a xanax its for anxiety, so I would imagine that the pain would diminish because it makes you relax and if its at all muscular, well there you go! Perhaps you have IC? I think burning with urination is a symptom of IC. Also, people with IC have trouble having sex as well. Do you pee a lot? And nerves are stupid, my pain was only there if provoked not all the time. So even with a nerve problem, it doesn't mean that your nerves aren't firing off different signals at different times. Pay attention to what you're doing when it starts hurting really bad. Sex? Sitting too long? But my vulvodynia def got way worse (as did everything) when my period came and better after it ended. Stop taking the antibiotics unless you really need them, they aren't going to help you for what you have. I had a doctor who did that to me too, and it never worked, finally, I got so frustrated I went to look for a specialist (after I was told I had herpes which I DIDNT!) and he diagnosed me with vulovdynia and treated me with a topical compound for a while and finally I couldn't take it anymore I opted for surgery.

Alana3

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Post  katie220 Wed Mar 20, 2013 6:38 pm

Thanks for the reply! I don't think I have IC. I mean I pee a lot but I've been that way since I was a little kid. What kind of surgery did you have? Surgery would be the last resort for me but if it works I would definitely do it. The only problem is that I can have sex at times and I wouldn't want surgery to numb me to the point where I can't have an orgasm anymore. Did it do that to you? I was also wondering if you felt a sort of "zapping" feeling or a feeling of electricity on your right side at times. It happened to me when I stopped drinking caffeine. Yes, it does get worse when I sit too long. When I get up and walk around it gets a lot better.

katie220

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Post  Alana3 Wed Mar 20, 2013 6:50 pm

They basically removed the affected skin, it was a last resort for me too, and my doctor tried everything before he did the surgery. I mean I'm not having sex right now, but I still have every sensation (besides the pain) that I had before surgery, now. You'll def be able to have an orgasm lol, no worries. I sometimes do get an electrical feeling, but its every now and then, but I think mine is from where my body is recovering from my surgery lol Yours sounds like mine where your skin is affected and possibly some muscular. But I mean I don't know for sure. Where are you located? If you're anywhere near me, my doctor is awesome and has made me feel so much better Smile

Alana3

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Post  katie220 Wed Mar 20, 2013 7:04 pm

That's awesome! I always thought surgery made you permanently numb lol. I live in a suburb around Kansas City Missouri. What was your condition called? If you can't give me the name of it could you describe it to me more? I want to tell my doctor about it because he is confused about what my problem might be too.

katie220

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Post  Alana3 Wed Mar 20, 2013 7:31 pm

If your doctor doesn't know what your problem is, I'd get a new one or someone who can help point you in a direction appropriate for you. Mine was provoked vestibulodynia, basically meaning that my pain was only there on contact (with a penis, qtip, pelvic exam, tampons, etc.). So sex was impossible, and where it sometimes flared it was nothing like I've heard other people describe. I guess it could make you numb, but that was a question I asked my doc when he first told me about it, and said that would defeat the entire point of the surgery and most people have like 98% success rates. I'd say mine was that close. The surgery itself was called a vestibulectomy. However, only a few people are referred that route because it's not for everyone. People with unprovoked vestibulodynia are not often reccomended to go down that road, for whatever reason, it wouldn't work in their case. But I had no burning with peeing, I would look into that too, that sounds awful. I live in Florida, I don't know if that's an option for you, but my doctor honestly was a life saver for me, he specailizes in vulovdynia, and chronic vag pain. Another thing I did was physical therapy, but before my surgery it was so painful I couldn't take it anymore and had to stop, now I go with no problems, except for muscle spasms. Grrr.

Alana3

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Post  katie220 Wed Mar 20, 2013 9:16 pm

Thanks for all the advice! You definitely helped. I will keep you updated on how my progress goes and I'm going to look up some vulvar pain specialists in Kansas City. I may just have generalized vulvodynia because it's not provoked. I'm only 24 though so I'm not really sure if I'm too young for that.

katie220

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Post  Alana3 Wed Mar 20, 2013 10:16 pm

It doesn't matter how old you are there are little kids with it unfortunately. Good luck lmk if u need anything

Alana3

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