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» UK Vulvodynia Clinics
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» 8 years and struggling
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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


Another Newbie

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Another Newbie

Post  toobusy on Thu Mar 31, 2011 8:34 pm

I am 43 married with two children 6 & 7. Four years ago my husband and I left our regular jobs to run our own business. When we left our jobs we also left health insurance. Two years ago I was diagnossed with Fibromyalgia and hypothiroidism. Both are under control with mild medications. In Dec. I got a sinus infection which led to antibotics....2 rounds which of course led to a yeast infection. Then came bacterial infection, a UTI, another yeast infection, UTI and Yeast again! I finally kicked the yest and ensured no UTI with the Candida diet, Pro-B and Cranberry supplemnts. Thought I was in the clear...then this irritation that would not go away...and it got worse! Here I am in the process of being diagnossed with possible Vulvodynia.

This is crazy...one day I am going along and the next things are buring and I don't know what to think. I don't have time for this, not like anyone does. I am good dismissing pain once I know what it is but, this may be a bit more difficult!

Does anyone know of any herbal supplemnts or booster that could help? If I correctly understand this is an autoimmune disorder and is the fibromyalgia. Concerend with medical test and procedures without insuranse.

toobusy

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Re: Another Newbie

Post  noni on Fri Apr 01, 2011 12:08 am

Hey toobusy!

Welcome!

So what is vulvodynia exactly? Good question!!!

Well, most believe that it can be due to any number of things, such as: skin condition, nerve irritation/entrapment, pelvic floor muscle issues, or re-current yeast that once treated pain never goes away.

I was diagnosed with neuropathic pain of the vulva...esentially nerve damage/irritation...which has caused other problems like severe muscle spasms, ie vaginismus.

In terms of natural approaches to the treatments...yea...I dunno...alot of us gals are on anti yeast and anti gluten diets...relaxation...accupuncture...meditation...physio for the floor muscles...

I cant really recommend anything natural per se...as it didnt do jack for me....Im on Elavil for the nerve pain 40mg, some of the lovely ladies on here take pregablin....

My appraoch is a combination of: meds, proper nutrition, sleep, and relaxation for my V.

Its really a crap shoot for this! Still, there is hope for relief. This thing strikes out of nowhere at any age it seems...its a bit of a mystery.

Have a looka round on the forum!

Cheers!
noni Smile



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Re: Another Newbie

Post  Sebby (Admin) on Sat Apr 02, 2011 4:21 pm

Hi toobusy and welcome to the forum

As noni says there are a number of theories on the causes of Vulvodynia.

As for natural medicine, I am currently doing pelvic floor bio-feedback and also use water spray and vaseline after unrination. I have had to look to conventional medicine for painkillers as I do not know of anything natural that would do the job.

Im currently on 300mg of Pregabalin and it helps to control flare ups. My flare ups coincide with my periods (the use of pads/tampons). They tried to stop my periods with Cerezette but I bled for 3 months on and off and still had pain and was too dry when they stopped

Other things that help are:

Wear only 100% cotton knickers/panties (im from uk so getting used to speaking in us terms lol)
Do not use any bubble baths etc, only let water touch your vulval area
Wash knickers/panties on high temp 60 or 90 degress with no detergent. If you feel you must use detergent then use non bio and give them an extra rinse. High temps are enough to kill any bacterias
I am cutting down on sugars and wheat (I see you have done the anti candida diet)
Get a foam doughnut cushion (with a hole in the middle) to sit on at home so there is no pressure on the vulvar

The term Vulvodynia simply means vulval pain and is what they tell you, you have after they cannot find a simply cause such as infection or skin disorder


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Re: Another Newbie

Post  Sebby (Admin) on Sat Apr 02, 2011 4:22 pm


Oops I pressed send before I wanted to!

Anyways, dont be afraid to come on here to vent your feelings and to get support

Take Care


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Thanks

Post  toobusy on Sun Apr 03, 2011 1:48 am

Thanks for the info ladies. I will keep searching and trying new treatments, will let you know what I find. By the way...officially got the diaganosis and doctor recommended a special physical therapist who specializes in treatment of vulvodynia and related problems. The Dr. says there are only a few in the country and we have one in NJ. Not sure how accurate that is but, I guess I have nothing to loose by calling. Anyone going to this type of physical therapist?

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Re: Another Newbie

Post  noni on Sun Apr 03, 2011 1:20 pm

Hey toobusy,

I will be trying this approach in time.

I know that mouse is doing some type of physio...you could ask her.

take care,
noni
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Re: Another Newbie

Post  Mouse on Sun Apr 03, 2011 7:49 pm

Hi toobusy and welcome!

I'm sorry you have found yourself having to join us but you are in good company. We are all searching for answers and being proactive about improving our health. Well most days, sometimes we just howl at the moon but that's ok as well.

Things that I believe have worked for me are - diet modification!!! I am sugar and gluten free, the gluten is because I have celiac disease but the sugar is to reduce acidity. I've had a huge improvement since I started that. I drink a lot of water, limit coffee and alcohol. I meditate, try to find as many natural feel good chemicals as I can, they are hard to find sometimes. I do PT and that has also made a huge difference, she does trigger point therapy and I also have acupuncture as I've annoyed some other nerves as well. I would think any womens health PT could help you. When you think about it there are a lot of reasons the pelvic floor gets irritated in women. I have a friend who has a torn muscle from childbirth and then there are prolapses and incontinence which can also be from childbirth or the pelvic floor becoming weaker with age. If you can't get into the one your Dr suggested have a look around for someone else.

I also think getting out in the sun, enjoying time with friends and family or trying to be social improves your mental health. Try for good sleep patterns so create an environment that helps you sleep well ie not too much stimulation before bedtime, low lights and good curtains etc.

Oh get a therapist! While this isn't in your head it's a hard condition to live with so unloading all the crap in a safe environment works wonders for most of us. In fact this would be number one on my list. My therapist helps me sort what seems like a huge mess into neat little compartments.

And I also believe that having sex if you can helps to heal. Check out Sarah's consult with Dr Glazer. I have generalised V so I can have sex without pain, well mostly - I have unprovoked pain all the time.

Ooops work time!

Good luck
Vicki

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Re: Another Newbie

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