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

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

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

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

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

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

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

» Help New Diagnosis
Scared.... 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!
Scared.... 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  cba321 Mon Jan 07, 2013 10:10 am

I had botox done about 5 months ago, and any time now the botox will cease working and i know in my mind that there is a chance i will go back to the way things were and all this money and time spent will just be to rule out another thing that didnt work...i do a lot of physio and stretches in a hope it will continue post botox

Its getting a little bit too much, havent had a proper relationship in years and now im starting to get older i guess by relationship standards...ppl start to think you are weird cause you dont want a boyfriend. To what age can i keep it going that im too independent for a bf

Ive been fairly positive for a long time but im slipping and its stupid cause my condition is by no means the worst at all
Anyway that is my rant, i'm currently seeing a psychologists as well which does help but guess i can't be perfect

cba321

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Join date : 2012-07-14

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Post  Alana3 Mon Jan 07, 2013 2:29 pm

Can you do the botox again? I mean with any of the nonsurgical treatments they unfortunately stop working. The important thing is to take what you can from it and maybe it won't stop working and you'll be fine and all the worrying is for nothing. I was in remission for a while and it came back to the point where I opted to have the surgery because I hated the hit and miss of it all. But now that I'm 5 weeks in I'm freaking if it worked or not. I guess there will always be some doubt in all of our minds. I'm taking it you had unprovoked vv? I hope that you can get some more relief if the pain does come back. But hopefully it won't.

Alana3

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Post  cba321 Tue Jan 08, 2013 10:24 am

Thanks Alana, yes I can do it again, however there was a randomized control trial that showed some women experienced relief after the botox has worn off due to all the stretching. The Physio I see has a few clients where the stretches have allowed the pelvic floor muscles to be stretched permanently. Guess I am hoping I will be one of those people, however I have been getting more pain so not sure if that is a sign of the botox wearing off and the muscles returning to where they were, if that is the case, and it might not be (being positive), I guess if I do it over and and over it will only be temporary. In the case of other conditions like Cerebral Palsy, where botox is used as a treatment, the body will get used to it after multiple doses and the effect botox has will diminish, so botox will probably only work a certain number of times. No I have provoked vv, only on occasion I get the pain unprovoked. I guess it is all the emotional pain of sexual dysfunction and social roles etc etc that is difficult, very difficult sometimes. I go on facebook and all my school friends are in relationships, getting married, having kids and I am too scared to go on a date...Anyway all I can do is keep going and try as many different treatments as possible and try not to freak out! lol. Hope all goes well with your recovery, fingers and toes crossed for you Very Happy

cba321

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Post  Alana3 Tue Jan 08, 2013 12:44 pm

Thanks now I feel like I have ic and freaking out I hate this I always have such bad anxiety. Remember that you do not have cerebal palsy.so you cannot compare treatments Smile

Alana3

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Post  cba321 Wed Jan 09, 2013 1:22 am

Yes it does feel like a constant battle sometimes! Not comparing treatment though! Just how long botox tends to continue to work in the human body in general. Treatment for cerebral palsy is completely different

cba321

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Post  Alana3 Wed Jan 09, 2013 1:15 pm

Gotcha I think tho it depends on you.. Some people it doesn't work at all. Ugh I hate v!

Alana3

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Post  cba321 Thu Jan 10, 2013 2:43 am

Yes very true, it does depend on the person

cba321

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