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» UK Vulvodynia Clinics
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» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
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» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Treatment Options / Surgery

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Treatment Options / Surgery

Post  vldicker on 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

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Re: Treatment Options / Surgery

Post  sailor_moon on 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.
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Surgery

Post  chelseax on 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

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Re: Surgery

Post  vldicker on 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

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:-)

Post  x_chelss@live.com on 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

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Surgery.

Post  x_chelss@live.com on 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

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Re: Treatment Options / Surgery

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