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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

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

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

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

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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.

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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 …

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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


What treatments have you tried? Please add your experience.

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What treatments have you tried? Please add your experience.

Post  Tyger on Thu Jul 12, 2012 9:51 am

Hello all and I apologise if there's a current topic like this - I searched and couldn't find one.

I am struggling a lot with which path to take in terms of treatment for my provoked vestibulodynia. I have been handballed around by a lot of doctors and specialists. I noticed this thread http://www.vulvodyniasupportforum.com/t590-curiosity-in-reguards-to-vulvodynia and thought the one-stop-post was a great idea, so thought I'd do something similar but in terms of treatments, so we can all get a good idea of treatments to try, to discuss with our doctors, and why, and how effective they were for other women.

So here's the questions.

1. Is your pain provoked localized (with touch/penetration) or generalized (all the time)?
2. How long have you suffered from this condition?
3. How old are you? (or if you wouldn't like to say, just answer pre-menopausal, menopausal, post-menopausal)
4. What do you think triggered the onset?
5. How can you best describe your pain and individual symptoms?
6. Have you ever found relief for any period of time, or been cured?
7. Do you have or suspect any accompanying conditions ie. bladder conditions, bowel/anal conditions, fibromyalgia
8. Have you ever been on, or are you currently on any hormonal birth control?
9. What treatments have you tried?
Please list the treatment, the desired outcome (science behind the treatment - why were you trying this method?), the length of time trailed, and the outcome of the treatment.
List all that you've tried, including holistic therapies, psycho-therapy, anything.
Please list the treatments in chronological order, if possible. Be as specific as possible about what helped and what didn't.

Thanks so much and I know you'll all be of great help to me in my efforts to try different treatments. If you think of any better questions that should be added, please do add them.

I will answer these questions myself in my next post.

Tyger.



Last edited by Tyger on Thu Jul 12, 2012 12:25 pm; edited 2 times in total

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Re: What treatments have you tried? Please add your experience.

Post  Tyger on Thu Jul 12, 2012 10:08 am

My answers.

1. Provoked - pain with penetration
2. 9 years
3. 28
4. A yeast infection that was treated unsuccessfully with over-the-counter yeast medications. Possibly use of the birth control pill
5. Pain type: stinging pain not just in the vestibule but in the vagina also. Burning and rawness in deepest. Pain all throughout intercourse, from penetration and up until 24 hours afterwards. A strange "pulling" sensation in deep, perhaps due to muscle tightness from so many years of pain. Not much generalized (constant) pain, except slightly irritated.
6. No, although as mine is mainly provoked, so when I'm not having sex I don't notice it as much. But the pain has been there since 2003.
7. None that I know of. I do pee an awful lot, and feel I don't empty my bladder properly - I assume due to pelvic floor issues associated with the pain.
8. Birth control pill since a couple of months prior to onset. Levlen, then Yasmin. I stopped taking the pill this year.
9.
Over-the-counter yeast medications.
Desired outcome: cure yeast infection
Length of time: one week
Outcome: possibly caused onset. Every subsequent time they have made me worse - avoid like the plague now.

Nizoral (ketaconazole)
Desired outcome: a long-term antifungal to cure chronic yeast infection
Length of time: 2 months
Outcome: I was eventually declared yeast free, but the pain remained.

Amytriptiline - working up to 70mg daily
Desired outcome: apparently to help with nerve pain in the vestibule area
Length of time: 4 months
Outcome: no affect whatsoever on pain. Made me feel drowsy and horrendous.

Acupuncture
Desired outcome: to fix misfiring pain signals to the brain
Length of time: 2 months, weekly appointments
Outcome: no effect on pain levels.

Biofeedback/pelvic floor physiotherapy
Desired outcome: started this just recently - it's been 8 years since initial treatments. After my second appointment I was told I had too much inflammation in the vulvar area to continue, and that I should seek other treatments to identify what is wrong with the area. I am testing negative for yeast, and everything else, so very confused what to do next.
Length of time: 2 months so far - 2 appointments
Outcome: so far no effect.

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time and treatments

Post  GrannyM on Sat Dec 15, 2012 4:54 pm

Just to add my experience:
1.Pain always in same area on line of old episiotomy scar, but intensity varies.
2. More than 15 years
3.69
4. Post menapausal and I've always had a very sensitive skin, allergies etc. but not in that area.
5. Raw burning sensation like a wound.
7.At strat I had fybroids and posterial prolapse(misdiagnosed as of bladder)
8. briefly in my 30s
9 a) Came off HRT b)Fenton's proceedure(gynoc. thought seam tight) c) Repair of prolapse d)Excision of scar tissue.(so 3 ops in sensitive area) d)Oestrogen cream or pseearies(used long term) May help a bit. f0 Replens rehydration cream. Clots not sure it helps.g) Injections to numb nerve. Complete failure. h) antidepresants and anti epilepsy medication.Supposed to block pain receptors. Several months. Horrible side effects slight benefit. h)Self prescribed aloe vera, pomegranate ol, footcream. Latter leaves area tingling which is better than the pain but short lived.
10.
Nothing really help, apart from the antobiotic pessaries given once years ago.Drs. happy to prescribe drugs that effect all body systems but not a locally applied atibiotic in absence of evidence of infecton.
Condition worstened by bowel motions, gardening is crouched at all, carrying weights,sitting, wearing trousers, sitting.
Sex a thing of the past(not throgh choice). Operations have worstened as pain now spreads into back of thigh.
Any research or suggestions would be welcome as sometimes I feel like jumping off a cliff. Not life threatening but chronic nature is very demoralizing.
Best wishes and good luck to other sufferers.

GrannyM

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a simple thing that helps

Post  justme47 on Fri Jan 04, 2013 9:08 pm

I have discovered lately that it is very helpful to wear loose breathable cotton panties at night to absorb perpiration. It really cuts down on irritation during the night and next morning. Also stay away from strongly perfumed detergents and fabric softeners. I also take a tricyclic and Lyrica (expensive, though, helps to have extended medical).

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Re: What treatments have you tried? Please add your experience.

Post  jen007 on Sat Jan 05, 2013 12:52 am

1. My pain is provoked with penetration, I have PVD according to my doctors.
2. 5 years
3. 20
4. I'm not really sure what triggered it Neutral At first I thought I injured it from a fall I had when I was 13. I also was kicked down there at 15 right around the time I noticed the pain. I was having chronic yeast infections until I switched to 100% cotton underwear. My doctor ruled out the above and said I was born with PVD from doing what I call the belly button test.
5. With penetration it felt like someone was shoving a hot knife made of sand paper into my vagina. On a daily basis though nothing really. Sometimes wearing jeans would be a problem, but then I started to wear jeggings which helped a lot.
6. All of the treatments I have undergone had not been successful. I had some relief with amitriptyline, but I had to stop using it.
7. I don't have any of the conditions you listed above (#7), but I do have panic disorder which I think might have something to do with it. I've seen from other forums and here as well that many women who have vulvodynia also have stress conditions or an anxiety disorder.
8. I've never been on birth control.
9.

Monistat
Desired outcome: Stopping chronic yeast infections.
Length of time: On and off for about 2 to 3 years.
Outcome: Would work for about a week or 2 at a time, the infection always came back up until I switched to 100% cotton underwear.

Amitriptyline- went up to 80 mg daily
Desired outcome: Stop the pain down there, making it bearable for penetration.
Length of time: Around 6 months
Outcome: It helped with the daily pains I had been feeling, but I had to stop taking it because It caused me to loose 15 lbs. in a short amount of time. This concerned me since I was only 120 to begin with. I haven't been over 105 lbs since then. It's weird because I was told it would make me gain weight, but it had the opposite effect on my.

Gabapentin- Compounded
Desired outcome: Stop the pain down there, making it bearable for penetration.
Length of time: 2 months
Outcome: Nothing changed

Gabapentin- Oral
Desired outcome: Stop the pain down there, making it bearable for penetration.
Length of time: 2 months
Outcome: Nothing changed

Lidocaine- 5% on cotton ball over night
Desired outcome: To numb out the area completely.
Length of time: Still currently using
Outcome: It worked for about 5 minutes then the pain would come back.

Surgery- Full Vestibulectomy
Desired outcome: To somewhat cure my PVD (Provoked Vestibuledynia)
Length of time: Surgery took about 45 minutes, recovery till I could walk again 2 months, and 8 months to a year to be fully healed (still in progress)
Outcome: I'd say I'm 95% pain free now. I do still have some painful areas, but nothing like I used to be. I'm able to have sex as long as I dilate everyday for 10 minutes with the largest dilator in my set and lots of lube! I also use the lidocaine gel before sex. The only problem is I'm not able to...finish or get any pleasure out of sex. I think it's because of lack of experience and just getting used to the fact that I can have sex with out it being painful. It's kind of hard to think about it not hurting. I'm hoping eventually it'll get better with some future pt and some practice.

Hope I was able to help out :]
-Jen


Last edited by jen007 on Sun Jan 06, 2013 3:01 pm; edited 1 time in total

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Re: What treatments have you tried? Please add your experience.

Post  cba321 on Sun Jan 06, 2013 7:21 am

1. My pain is provoked
2. How long have you suffered from this condition? 8 years, since first sexual experience, however have never been able to insert a tampon so that would make it 13 years
3. How old are you? 27
4. What do you think triggered the onset? Not really sure, only significant thing that happened was a fall between my legs at age 6 years or so, no major infections in the area
5. How can you best describe your pain and individual symptoms? extremely tight muscles producing significant muscular and neuropathic pain with any penetration of the vagina. Burning, stabbing stretching type pain
6. Have you ever found relief for any period of time, or been cured? Botox and stretches have helped to relax the muscles, however I am still under the influence of Botox so whether the effect will continue after this has worn off remains to be seen.
7. Do you have or suspect any accompanying conditions ie. bladder conditions, bowel/anal conditions, fibromyalgia - I have always had digestion issues which my Physio believes is related to the tight pelvic floor muscles
8. Have you ever been on, or are you currently on any hormonal birth control? I started using birth control well after my first sexual experience. I have not been on the pill for 9 months now and have found no difference whether I am on the pill or off it. As I had not touched the pill before my symptoms appeared they could not have caused it.
9. What treatments have you tried?

1. Botox treatment in conjunction with physio and daily stretches to the pelvic floor muscles
Desired outcome
Lengthened pelvic floor muscle, with the botox giving me a chance to stretch the muscle out which was not previously possible
Botox injection on the 4/7/12, which should last for around 6 months. Currently the botox is still working so I am not sure if my ability to use the largest dialator will continue when the botox wears off.

2. Endep
Desired outcome
Decrease neuropathic skin sensitivity pain, tried on 2 occasions for about 4-6 months, on a max dose of 20mg
Outcome
Took the edge of the nerve type pain affecting the outside of the vagina, stopped due to the very adverse side effects, depression, excess sweating

3. Montelykast
Desired outcome
Stop inflammatory response from mast cells. Trialed this for one packet (a month), Gyno said there would be a response very quickly if there was going to be one
Outcome
no change at all

4. Biofreedback
Desired outcome
Train muscles to relax more by use of a meter to show me when the muscle is most relaxed
Outcome
Gave me a good understanding of how to relax my muscle which is completely different to any other muscle in my body, however did not give any significant change however my muscles were extremely tight, almost like bone. If your muscles are not so much in spasm this may assist more.

5.Psycho therapy and hypnosis/mindfulness
Desired outcome
To be able to deal with this disease better and live a healthy balanced life. Mindfulness to allow me to distinguish between pain that I have made in memory and pain which is an actual sensory experience. Hypnosis to access deeper emotions about the condition and life and deal with it better
outcome
A must for anyone with this condition. Having someone to talk to about your darkest thoughts regarding this beast is very important as it is not a good idea to constantly tell a loved one. Have just started hypnosis and mindfulness but can see how they can help

6. Large doses of antibiotics and antifungals despite negative test results
No change at all

7. Chiropractor
Desired outcome
Align my spine snd pelvis so that when my muscle re-engage post botox, my skeletal system is in the best possible position. Help with neuropathic pain
Outcome
Some neuropathic pain relief but have only had 4 sessions

Wendy

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Re: What treatments have you tried? Please add your experience.

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