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» 7 months since the diagnosis
Post Full Vestibulectomy - 5 Years Later - Please Read EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Post Full Vestibulectomy - 5 Years Later - Please Read EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Post Full Vestibulectomy - 5 Years Later - Please Read EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Post Full Vestibulectomy - 5 Years Later - 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!
Post Full Vestibulectomy - 5 Years Later - Please Read EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Post Full Vestibulectomy - 5 Years Later - Please Read EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Post Full Vestibulectomy - 5 Years Later - Please Read EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Post Full Vestibulectomy - 5 Years Later - Please Read EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Post Full Vestibulectomy - 5 Years Later - Please Read 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


Post Full Vestibulectomy - 5 Years Later - Please Read

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Post  jen007 on Tue May 02, 2017 6:18 pm

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post surgery, I was 99% pain free... I say 99% because I still had some tightness here and there, but nothing my dilators couldn't help along. In October of 2016 that all changed. I went to sleep one night pain free & woke up the next with pain. It's never left me since. The pain is much different than what I had experienced before surgery. This didn't feel like vulvodynia to me. The pain moved around my urethra. I thought I must've had an infection or maybe even a reaction to some scented toilet paper... If only that were the case. It's had some variations over this past year, but mostly my symptoms are constant burning... like a thrush type of burn or UTI type burning. All inside my labia around the urethra. Sometimes it even burns to urinate. I can still enjoy sex & have orgasms, but there's times where it's impossible. The aftermath is also unpleasant. I feel deep stinging pain... my regular burning feeling times 10. It doesn't last long, but I'm out of commission sex wise for a few days to recover. Wearing tight clothes is painful, but I deal with it because I don't want to sacrifice my style... it's one of the things that makes me feel normal. I try to make myself look as good as possible with clothes & makeup to compensate for the awful pain I feel 24/7. I've tried so many things, but nothing seems to help me. At first my surgeon, who did my vestibulectomy, thought the pain stemmed from a Skenes Gland Cyst. He removed it and it changed nothing. I had to go thru the same recovery time as I did with my first surgery & paid all that money for no results. It was very upsetting. Then I tried various creams & medications as I did before my surgery. Even went back on amitriptyline & nortriptyline... neither helped at all. I can't use lidocaine gel to numb the pain because it burns too much... even if I mix it with lubricant gel... I tried it a couple of times & just decided to never use it again. The pain it caused wasn't worth it to me. I've gotten to the point where I had to stop seeing my gynecologist that has been with me throughout my entire journey. She has nothing left for me to try... and honestly she was just guessing with treatments. Antibiotics, medications, creams, therapies... doctor after doctor... nothing helps. I started seeing an infectious disease doctor. I wanted to see if there was some way I could've gotten some kind've new infection that on one has heard of or doesn't test enough for. She couldn't find anything wrong with me either. We did a bunch of blood work... no STDs or anything out of the ordinary. I also went to a urogynecologist to no avail. Currently the infectious disease doctor has me on Singulair for anti-inflammation. I've been on it for 2 months & haven't noticed anything drastic.

Here is a breakdown of my symptoms:

Constant burning pain around the urethra and labia area. Also, every once in awhile the pain escalates... at times I wonder if I have an infection, but I usually don't show anything when I get tested. The pain will last between 2-3 weeks & then I'll feel the regular burning pain until the next time it escalates.

I'm wondering if any of you have experienced something similar to this. I would love to hear recommendations. My gynecologist told me that our nerve endings can grow back after being removed & then travel to a different area. I never heard of anything like this before surgery. I didn't know nerves could grow back after being cut. Maybe I'm just one of the unlucky ones... but I feel like we never hear from women after surgery. We never get to know what happens years later. Who knows if they live a pain free life still. I was hesitant to post here again... it's taken me some time to realize I need to be a voice for women who suffer with this. No one deserves this. I hope that one day I can find relief... as well as all of you.

I hope to get to read some feedback from you ladies. Hope you're all managing as best as you can!

-Jen

jen007

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Post  fairlight10 on Tue May 02, 2017 8:52 pm

Sorry to hear you are still suffering. Have you considered trying a low oxalate diet? I have had some stinging this past week. Especially after urination. I looked at what I have consumed recently and there are a lot of high oxalate foods. For instance, spinach, peanut butter,beetroot,too much coffee and chocolate. It has calmed down now, but was starting to remind me of the old days. I also used to make sure I was dressed nicely, hair and make up just so. Did not know why I did this but I was probably compensating or trying to disguise what was going on with me. I know you can also neutralise the acidity of your urine with calcium citrate, calcium carbonate and potassium citrate. Hope this can help.

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Post  sj17 on Sat May 06, 2017 5:59 pm

Hi. Sorry to hear about your suffering, I truly hope your pain goes away soon. I'm just wondering did you receive your surgery in the UK and if so what hospital / doctor?

Thanks,

Sarah

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Post  flick001 on Mon May 22, 2017 10:12 am

Hi,

To me the deep burning and stinging connected with the urethra sounds like Interstitial Cystitis - have you seen a urologist and been tested for this?

I hope you find out what it is and get some relief!

flick001

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Post  Meggiemay on Sat Oct 07, 2017 8:19 pm

How are you doing now? All of my pain is around my urethra and clitoral area and they are telling me to have a vestibulectomy but i'm not so sure.

Meggiemay

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