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

» Please tell me this can get better
Successful surgery! EmptySat Jul 18, 2020 7:38 pm by sammykramer

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

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

» 7 months since the diagnosis
Successful surgery! EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
Successful surgery! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Successful surgery! 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!
Successful surgery! 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


Successful surgery!

3 posters

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Successful surgery! Empty Successful surgery!

Post  Alana3 Mon Jan 14, 2013 6:19 pm

I had my 6 week postop appointment today, he said that everything looked good and now I just need to use some dialators and physical therapy and I would be good to go! I am so excited as I had been freaking out that the surgery didn't work. I didn't realize that my muscles were still sore, but at least that is something that can be worked on, so it's a much more positive prognosis. I am so excited to get my life back. If any of you are questioning or faced with surgery I will be happy to answer any of your questions. Hope everyone gets to feeling better soon Smile

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  chilijackie@aol.com Fri Feb 15, 2013 3:41 pm

After three years of constant pain with HPN. Vulvadynia, My Doctor wants to cut out the nerve. it is on the outside, where I would get herpes. Same place all the time.
Have not had outbreak for three years since I am on 800 mg per day of antivirual.
Plus Lyrica, Plus, all kinds of shots down there. Very scared of surgery to make it even worse. Has anyone had the surgery on the outside near entrance.
Thank you very much.

chilijackie@aol.com

Posts : 7
Join date : 2013-02-15

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Post  Alana3 Fri Feb 15, 2013 3:43 pm

That's where mine was but I don't have herpes. If it's for vulvodynia my surgery was successful

Alana3

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Successful surgery! Empty My Vulvodynia

Post  chilijackie@aol.com Fri Feb 15, 2013 4:44 pm

Thank you . MY never damage was caused by herpes. But they do call the after effects vulvodynia. or HPN. Did they remove any nerves in you surgery. How long did it take you to heal, how much pain was invovled after surgery. Thank You very much

chilijackie@aol.com

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Post  BpCookie Fri Feb 15, 2013 6:50 pm

I have questions for both of you. What is the surgery called? I was told that they have a few surgeries that they can do, one is to cut out the vulva skin and pull up the good skin and stitch it or remove the nerves. I have Lichen Simplex Chronicus Vulva which is the thickening of the vulva skin because of this my nerves are very pissed off and the burning pain has spread to my butt and inner thighs. Was yours anything like this? Also, to chiliJackie, I didn't have herpes but I did have vaginal warts that was on my vulva and the Dr. froze them off. It took her like three times to do it and the last time I asked her to freeze them deep, just to make sure she got them all. This was about 12 yrs ago and it has left scars. Did your herpes leave any scars? I have always wondered if the freezing and scaring is why I got this horrible thing. I was also wondering, you said that you had gotten shots on your private area, what kind of shots were they? Ive been having procedures done around my tail bone area and so far they have failed. They were trying to burn the nerves in that area. But if they could burn the nerves through my vulva area, I would be happy as Hell. Nobody has suggested it. Im on Lyrica as well and it sucks because it doesnt work but it messes up my head and I can't think clearly. I am getting pissed off about this entire friggin thing. 2 years of constant pain and Im thinking about getting it cut out, prob. the nerves. I would be happy if they would just cut entire vagina out and sew the damn thing up.

Sorry, Im in a very crabby mood today. Constant pain, Bipolar, peri menopausal and my hair is falling out in hand fulls, will cause anyone to be crabby.
BpCookie
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

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Post  Alana3 Fri Feb 15, 2013 7:52 pm

I got a vestibulectomy. nothing what you have. Where are you our doc deals with ls I got the surgery you described.

Alana3

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Successful surgery! Empty Jackie

Post  chilijackie@aol.com Fri Feb 15, 2013 10:43 pm

HI. My herpes simplex 2. One blister only 2010 . When it healed completly in 10 days.
It does not leave any scares or anything that you can see with the eye. I was left with a nerve ending that will not stop screaming at me. The shots were cortisone, and what ever else he put in them. I did have more pain after the shots, and also was black and blue all the way to my butt hole. It was not pretty and hurt like hell. The shots have also brought the nerve to the surface so you can now feel a lump where before it was only pain. I was told botox would not work for me if though muscle spasms do not help the nerve. I am only on 50mg of Lyrica. My doctor wanted me to start at 150 mg. I could not even talk or walk on that amount, tried it for four days, then dropped to 50mg. Which I can tolerate. I guess I do not realize how foggy my head is. I will probably have the surgery. My Doctor is well know and trusted. It took alot to find him.
He does call vuvaldyniia what I have but also calls it HPN since it was caused by the herpes to start. Any thing you want to know, just ask.

chilijackie@aol.com

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