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» 7 months since the diagnosis
Looking for community and maybe some words of encouragemenr EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Looking for community and maybe some words of encouragemenr EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Looking for community and maybe some words of encouragemenr EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Looking for community and maybe some words of encouragemenr 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!
Looking for community and maybe some words of encouragemenr EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Looking for community and maybe some words of encouragemenr EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Looking for community and maybe some words of encouragemenr EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Looking for community and maybe some words of encouragemenr EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Looking for community and maybe some words of encouragemenr 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


Looking for community and maybe some words of encouragemenr

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Post  sophstew24 on Wed Jul 12, 2017 2:35 pm

Hi there!
I just joined this morning and wanted to share my journey. I am 24 years old and have had vulvodynia for about 2 years now. I was put on 80mg of amytryptiline and pelvic floor therapy which did reduce the pain, but a full vestibulectomy was recommended. This past December, I had Dr. Wang in Greenville, SC perform the surgery so I guess that puts me 6 months out. I am now down to 20mg of the pills and back to PT. I have also started using dilators as well. I am still having pain although much less, however I was hoping for a 100% recovery! I have been told by my new doctor that I have no scar tissue and the only portion of damage that still remains is near the opening of my vagina. Pain scores of the rest of the skin have been cut in half, which is great news. She tells me not to lose hope, as I can be healing for upwards of a year with how much was taken and the area of the surgery. I was just hoping to hear from anyone whose story sounds similar to mine? I have a wonderfully supportive boyfriend who isn't concerned at all about sex, but eventually I would love to achieve a somewhat normal sex life. Any advice?? Or maybe other things I can try?

Thanks,
Sophie

sophstew24

Posts : 1
Join date : 2017-07-12

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Post  PainBlogger on Fri Jul 14, 2017 7:57 am

I haven't had surgery but do have experience of needing to use dilators and PT. Time and patience is the key but they definitely helped me. If you want to read my history you can do so here to avoid me retyping: https://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

It's great that you have a supportive boyfriend. My husband has been patient throughout and that's been invaluable to me. Certainly try to stay positive that you can achieve a normal sex life. Don't try to rush the dilator exercises/PT. Listen to your body and also it can help to record your progress in a diary so you can look back and see how you're doing. Good luck.


PainBlogger

Posts : 219
Join date : 2015-07-27

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Post  sj17 on Sat Aug 26, 2017 3:54 pm

Hi Sophie,

Just wondering what your recovery was like after the op. Did you still have flares of pain for a few days and so forth? How did it feel?

sj17

Posts : 32
Join date : 2017-05-06

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Post  tinkerbelle2 on Sat Sep 16, 2017 1:34 pm

sophstew24 wrote:Hi there!
I just joined this morning and wanted to share my journey. I am 24 years old and have had vulvodynia for about 2 years now. I was put on 80mg of amytryptiline and pelvic floor therapy which did reduce the pain, but a full vestibulectomy was recommended. This past December, I had Dr. Wang in Greenville, SC perform the surgery so I guess that puts me 6 months out. I am now down to 20mg of the pills and back to PT. I have also started using dilators as well. I am still having pain although much less, however I was hoping for a 100% recovery! I have been told by my new doctor that I have no scar tissue and the only portion of damage that still remains is near the opening of my vagina. Pain scores of the rest of the skin have been cut in half, which is great news. She tells me not to lose hope, as I can be healing for upwards of a year with how much was taken and the area of the surgery. I was just hoping to hear from anyone whose story sounds similar to mine? I have a wonderfully supportive boyfriend who isn't concerned at all about sex, but eventually I would love to achieve a somewhat normal sex life. Any advice?? Or maybe other things I can try?

Thanks,
Sophie

Hi Sophie, and welcome! Smile I am the same age as you but from the UK.. I have also suffered for years. Have tried amitryptline too though I gave up with it too soon to know whether it would've been helpful to me. I had some weird side effects on it that I couldn't persevere with like blurred vision (but nobody reading this and be discouraged by that as one person may have side effects on a medication that someone else doesn't experience at all so please don't rule anything out!!) Well done on going ahead with the surgery, it sounds as if it has gone well! Great to hear. Even if the pain is not fully gone but greatly reduced that is still a victory. And you are still in early days, healing can take time. I would also love to achieve a somewhat normal sex life too! My best advice would just be to not put pressure on yourself. If you feel ready to give it a go, try and relax and not put too much expectation on it, just see what happens. Have a couple drinks beforehand if that may ease any anxiety and make sure you are - sorry haha - well lubricated! I have used a good gel called Sylk which helps if you need extra. I think the dilators and seeing the PT hopefully should help you to relax the muscles also. I'm still on my own journey and quite inexperienced in all this when it comes to the medical side of it all.... But just do what feels right for you Smile
tinkerbelle2
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 27
Location : Brighton, England, UK.

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