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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


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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