Vulvodynia Support
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» Hope to all my suffering ladies
Treatment Options / Surgery EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Treatment Options / Surgery EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Treatment Options / Surgery EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Treatment Options / Surgery EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Treatment Options / Surgery EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
Treatment Options / Surgery EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Treatment Options / 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!
Treatment Options / 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


Treatment Options / Surgery

4 posters

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Treatment Options / Surgery Empty Treatment Options / Surgery

Post  vldicker Mon Jan 26, 2015 11:21 am

I am so happy to have found this forum. I have been suffering with vulvodyina for years…diagnosed when I was 22 and now am 25 but suffered long before the diagnosis. Over the past years it would only flare up for maybe a few days and then wouldn't bother me at all for a long time. My doctor put me on antidepressants and lidocain gel which did nothing to stop the random flare up so I stopped taking the Meds. Then in the past year it has been getting worse. In Dec 2014 it flared up and has not stopped since, so has been almost 2 months.

My vulvodyina is extremely localized to one spot. I have been to the doctors so many times that he knows exactly where to go to. Right now he has me on Gabapentin and Norco (only taken when in extreme pain). I also get injections of lidocane once a week (which I do not recommend as it only provided one day of relief for me). I have noticed that if I take AZO it helps numb the area which is nice but I don't like to take it all the time. The thing that upsets me the most about all of this is the number of meds I am taking and the damage it is doing to my liver. I am one who would prefer no meds at all.

My next treatment option is surgery. I was wondering if anyone had gotten the surgery and if it helped. According to one of my doctors I would be a perfect candidate (Not my gynecologist, so I have to bring it up with him still). I am willing to take this option if it doesn't make it worse and there is a chance I will never have to take pain meds ever again for this!!! I am a runner and a very outgoing person in a fantastic relationship and would LOVE to have my life back!

vldicker

Posts : 2
Join date : 2015-01-26
Age : 35
Location : Ann Arbor, MI USA

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Post  sailor_moon Mon Jan 26, 2015 8:26 pm

You poor thing. I am 27 and I know what it's like to be dealing with this sh*the when your young. It's the worst.

If it is only in 1 spot that's a good sign that surgery would work for you, but it should be a last resort.

It has taken me almost 2 years to find a good doctor and over $10000 spent on incompetent doctors and treatments.

I finally had a proper hormone profile test done which shows I have very low estrogen, bordering between menstruation and menopause. Lack of estrogen can cause vulvodynia. ultrasound and blood test proved I also have PCOS. And my doctor suspects I have endometriosis so I am on the waiting list to have a laproscopy and hystoscopy to see if I have endo and remove it as well as seeing if anything else internal can be causing my problems. Apparently endo can settle on nerves and cause vulvodynia, and there's no fixing it until the endo is removed.

My symptoms are different to yours. I have itching and burning randomly all over. Some days are worse than others.

Yours does sound nerve related. But in saying that, the mess they have given you have not worked so it may be something else. Try to hang in there. It's so hard I know.

You really need to see a good gyne/ vulva specialist. Google the best ones near your area.
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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Post  chelseax Thu Jan 29, 2015 4:46 pm

Hi, I'm glad you found this forum to as it is very good for people with vulvodynia as there arnt many of your friends who have this illness. My names chelsea and I'm 19 years old, I've had Vulvodynia for 3 years now, yesterday I made the biggest choice of my life and had a Vestibuloctemy! (the surgery you are talking about).
Over the last 3 years I have tried the lidocaine gel, which worked mainly during and after sex, I also tried the gabapentin, and antriptyline and nortriptyline. Not any of those antidepressants helped in the slightest, they just sent my emotions through the roof with the side effects. The surgery isn't always a cure but it is the best case of treatment known to doctors yet, online it says the success rates are quite low, but they haven't been updated for about 15 years, the success rates are now in the high 70's all the way to 100%. I had a modified fentons procedure and a Vestibuloctemy, I also had Botox injected into my muscles to stop them from spasming up everytkme something entered my vagina, I couldn't even wear a tampon without having to force it in (sorry for the grafic detail) I only had the surgery yesterday, but the pain has been at a minimum, the only trouble I have had is going for a wee. It burns but I also poor a jug of water down my lady bits as I am peeing so it doesn't burn as much. If you have any questions on the surgery feel free to message me.

Chelsea x

chelseax

Posts : 7
Join date : 2014-11-18

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Treatment Options / Surgery Empty Re: Surgery

Post  vldicker Thu Jan 29, 2015 4:51 pm

Hello Chelsea,

Hopefully you have found the cure for you. I am scheduled to meet with a surgeon in a month. We will just talk about it and decide if that is the best option for me. Until then, I have injections and gabapentin to try and get me through. I am also going to see a chiropractor to see if that makes a difference.

I would be extremely interested if hearing how you are doing two or three weeks from now. Even though we are not all the same I would like to know.

vldicker

Posts : 2
Join date : 2015-01-26
Age : 35
Location : Ann Arbor, MI USA

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Post  x_chelss@live.com Thu Jan 29, 2015 7:27 pm

Yeah sure I will happily tell you about what everything is like in 2-3 weeks, at the moment everything pain wise is low just the odd sting in some places where the stitches are. I had a look in the mirror earlier to see what it looked like, and be prepared if you have the surgery because it is not a pretty sight at all! I cried, but I have been told it gets so much better once the swelling has gone down x

x_chelss@live.com

Posts : 50
Join date : 2014-02-12

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Treatment Options / Surgery Empty Surgery.

Post  x_chelss@live.com Sat Apr 25, 2015 10:58 pm

Hi, I just come across this post from a few months ago.
How did your meeting with the surgeon go? Did you decide to have the operation or have you found another treatment?
It's been 13 weeks since my surgery and I've started to have regular sex again. Vertically pain free! I do still have some painful tissue at the top of my vagina hole which my surgeon said he would remove if needed but I'm not struggling day to day with the pain anymore. I do have burning around my urethra still but that's suspected to be my skene glands, which can also be removed if needed but I don't feel like it causes much pain anymore.
If you still use this site it would be nice to hear from you Smile

x_chelss@live.com

Posts : 50
Join date : 2014-02-12

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