Log in

I forgot my password

Latest topics
» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


arora's long painful story

Go down

arora's long painful story

Post  AroraNightfire on Fri Jan 20, 2012 6:49 pm

Hello everyone,

I've been reading many of your storys and I am amazed at how similar they are to mine. Im currently trying to write a book on my experiencing living with vulvodynia. In my book I want to talk about how my pain started, dialogues between myself and others in my life, doctors visits, anything concerning my pain. Its not easy to write about because its something I deal with everyday and I would rather just phocus on things that make me smile instead of my painful past and having to think up, remember conversations from long ago.

I've been writing down every appt I've had since 9yrs ago when my pain started. The past 3yrs I've been keeping more written details on appointments. My pain started in thr form of an itch and stabbing kneedles in my labia minoras 9yrs ago when I was 18 after I first had sex. I went to see my primary perhaps 3 times in the course of 1 yr. He prescribed my nystanine which made me bleed then clotrimazole. These creams are ment for yeast infections. He never did a pap test to prove or disprove it was yeast that was causing my constant chronic itch. It was all an assumption. ;( I lived with itch and kneedles, rawness after urinating for
avatar
AroraNightfire

Posts : 40
Join date : 2012-01-20
Location : Cape Cod Massachusetts

View user profile

Back to top Go down

continuation

Post  AroraNightfire on Fri Jan 20, 2012 7:05 pm

Forever. Thr creams he gave me soothed my itch when I applied them but when it got wiped off the itch came back with a vengence. It wasn't thr solution. For yrs after my sexual evperience I wasnt sexually active. 3 yrs later I met my current boyfriend. I still had some rawness after urinating and some kneedles that would stab my labias. It was an anoyance but not so much it occupied my mind all the time. About 2yrs after I met my bf I moved in with him. The itch and rawness eventually became unbearable at work and I went to see a local dr. He didn't know what to tell me. I even saw the nurse practitioner in that same office. She did my first vaginal exam. She said it looked like yeast just like dr number 1. She did a culture and prescribed me flucunazole pills. The came back negative. The pills did nothing for me. They refused to prescribe me clotrimazole which doctor number one had prescribed me. It was the only thing that I knew at least soothed it somewhat. Then I got fed up and asked to see a gyn locally.

I saw a gyn locally 3 times in the course of 1yr. He prescibed me betamethazole valerate cream. He said I had vulvar distrufy. The cream would thin out the thickened skin. It would cure me eventually and would take time since I've had this problem for yrs. He was rude and acted like a know it all. He wasn't very gentle. So I never returned after the last time. At first the betta val was very effective in stopping the itch but in time over the course of using it for 2yrs I noticed it started to make me feel more raw. It reached a point about 1yr and 3mo ago I had to stop it because I felt as if someone took a blow drier to my vulva. I had to stop wearing pants and underwear. I couldn't even sit without pain......
avatar
AroraNightfire

Posts : 40
Join date : 2012-01-20
Location : Cape Cod Massachusetts

View user profile

Back to top Go down

continuation

Post  AroraNightfire on Fri Jan 20, 2012 7:25 pm

I went to see my primary dr and he didn't know what to tell me. He finally told me it was vulvodynia since the pain had been going on for such a long time. He didn't know how to treat me, nor did he know of anyone who could help me. He left it to me to find someone and he would refer me to them. So I looked around and thought I found the right person in boston.

I went to the tufts medical center and saw her. I had 3 visits with her. She at first thought I had a yeast infection. I wanted to strangle her when she told me that! She prescribed me an estrogen cream to use externally to build up my tissue since I had been using a skin thinning cream (betta val) for 2yrs. She prescribed my lidocain gel. She also prescribed me fluconazole pills just in case it was yeast. The second time I saw her she said the test was negative and it wasn't yeast. She thought it might be a autoimmune skin problem and took a piece of skin from my vulva. she said it would look like a cigarette burn. I told her I couldn't stand the estrogen because it made my burn and the lidocain gel did nothing for me. She prescribed me a gabapentine cream from special compounding pharmacy in newton. The third time I saw her she said I did not have an autoimmune skin problem, the test was negative for lichen simplex among others. She said it was vulvodynia and gave me a hand out about the successes of gabapentine cream. I had been in contact with vulvar support ppl who told me to see a better dr in burlington ma. So she referred me there.

It took me 3 months till I could see the head dr in that vulvar pain center. The previous dr was hesitant to start me on gababpentine pills instead of gaba cream. I persisted in saying I couldn't stand the cream and finally she prescribed it, she said the theraputic dose is 3600mg. I would be increasing 300mg every week till I reached that dose. Meanwhile she told me to try physical therapy.

The physical therapist gave up on me after 2 months since I was in so much pain I couldn't do the pelvic exersizes she wanted me to do. The electrical biofeedback therapy did nothing for me. She also tried putting pressure on my ass muscles and vaginal muscles saying it would relax them. It didn't stop any pain only felt like she was pressing on bruises.

When I finally met with the famous pain dr in burlington. I told her I couldn't sit because of the pain. She did a pap test. She touched around my inner labias and asked if it hurt
avatar
AroraNightfire

Posts : 40
Join date : 2012-01-20
Location : Cape Cod Massachusetts

View user profile

Back to top Go down

continuation

Post  AroraNightfire on Fri Jan 20, 2012 7:34 pm

She gave me a chemical ice pack after I told her it hurt. I told her of my fear I might have pudendal nerve entrapment. She said I should go to new york city and have a pelvic mri to see if the was indeed entrapped.

I went to nyc last spring with my bf accompanying me. I met with some 23yr old kid who put me in the mri machine and told me not to move and just relax. I never met with the dr who read the mri ;( all that way to see no one.

2 weeks later my dr in burlington called me and said she received the rezults and I don't have PNE. The nerve is not entrapped. However the mri did show some deep scar tissue on the fat tissue leading from my vaginal opening to my clit and back on the left side to my anis. She couldn't explain why I have it. She just said scar tissue is usually from exersize or surg.ery. I asked if sex caused it and she said no.


So I kept increasing the gabapentine every week until I reached 3600mg
avatar
AroraNightfire

Posts : 40
Join date : 2012-01-20
Location : Cape Cod Massachusetts

View user profile

Back to top Go down

continuation

Post  AroraNightfire on Fri Jan 20, 2012 7:48 pm

The dr in burlington wanted me to see a plastic surgeon in New Hamphsire who could possibly give me botox injections to stop the pain. My insurance wouldn't cover an appt with him since it was out of state. So the dr instead sent me to an anasthesiologist in boston.

The anasthesiologist did a nerve block on me june 2010. 4 shots of steriod into my sacrum bone. It was thr most painful experience ever. I wish she had put me under anasthesia. She said it would take a few weeks to work. Unfortunately it did nothing for my pain.

The next time I met with her about 2 months later she said I might have arethromelalgia of the vulva. Its a rare condition in which warm temperatured make the hands and feet hot and red and the only thing that helps is cold water, air, snow etc. There were 2 cases reported on the vulva and scrotum. She told me to get an ekg test done to check my heart. She wanted to switch me from gabapentine to lyrica since lyrica is the newer form of gaba. So since then I have been on 600 to 900mg a day of lyrica, no longer on gaba.

The dr in burlington also put me on cymbalta shortly after. So occasionally I take that when im working.

The anasthesiologist in boston at brighams told me the last time to try religiously everyday to insert my dildo and leave it for 15minuted. I tried it for 1 week using slippery stuff lube. I couldn't take the pain it braught thr following days so I stopped,
avatar
AroraNightfire

Posts : 40
Join date : 2012-01-20
Location : Cape Cod Massachusetts

View user profile

Back to top Go down

continuation

Post  AroraNightfire on Fri Jan 20, 2012 8:00 pm

I've been looking up DMSO. Its a chemical known as a solvent that penetrates the skin allowing other substances to enter into the blood stream. Its been used on horses legs for pain and for arthritis in ppl. The anasthesiologist at brighams wanted me to try it. Since I've had nothing but bad experinces with creams I didn't want to try it.

Next week I have an appt with the burlington dr and I will ask her about the DMSO. I meet with her every 3 mo to update her on what the anasthesiologist has been suggesting me try and what's been working or not working.

I am very frusterated and wish there was a way I could have releive permanently. I broke my ankle 3 weeks ago falling down stairs. So now I no choice but to recline or sit down which does bring me pain. I've been using frozen gelpacks for relieve on my vuvla after I pee and on my ass crack when im sitting. Its always a project for releif after I pee. Its always a cold water rinse and then a frozen gelpack or a fan for 10minutes after the rinse.


As for sex...I rarely have it...he never instigates it because he doesn't want me to complain im hurting after or during. I am the only one who knows how to touch my clit with little pain. I can make myself orgasm but I don't play with myself often. I spend so much time trying to get relief. I feel touching it will piss it off somehow. My vulva and perineum are eternally angry at me.
avatar
AroraNightfire

Posts : 40
Join date : 2012-01-20
Location : Cape Cod Massachusetts

View user profile

Back to top Go down

Re: arora's long painful story

Post  ButterflyLiz on Sun Jan 22, 2012 11:59 am

Hi Arora, welcome to the forum. Sorry you've had such a horrible time with the pain. Can I ask, is your pain 24/7? It sounds like it is but I just wanted to check. You know I'm half wondering if you do actually have pudendal nerve problems. I'm not sure how the doc was so sure that you don't because you can't tell for sure from an MRI scan - they don't show nerves & if anything will only show the impact of any entrapment...and as you had unexplainable scar tissue, that rings bells to me. With the injections you had, were they into a particular nerve?
avatar
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 32
Location : UK

View user profile

Back to top Go down

Nerve Blocks

Post  AroraNightfire on Mon Jan 23, 2012 8:29 pm

I had nerve blocks June 2011...4 injections of 120 mg of Depomedrol. They were injected into the S1S2 nerve root in my sacrum bone.....VERY PAINFUL I was nearly crying by the end of it. They were recording my heart rate and oxygen. I kept holding my breath....never again. The Posteriorfemorocutaneous branchs out from the S1S2.

The MRI was done last spring. I really want to know WHY caused that scar tissue. Any ideas? When I first visited the pain dr and she had received my MRI she thought I might have had a baby. I never had any babies.
avatar
AroraNightfire

Posts : 40
Join date : 2012-01-20
Location : Cape Cod Massachusetts

View user profile

Back to top Go down

Re: arora's long painful story

Post  ButterflyLiz on Mon Jan 23, 2012 9:23 pm

I really don’t know much about anatomy, though I’ve been trying to learn from diagrams online (which isn’t the clearest way!). When the blocks were done, were they particularly targeting your pudendal nerve? Wikipedia tells me that it derives its fibers from S2, 3 & 4. Did the anaesthesiologist have much experience with vulvodynia / PNE? I only ask because a few years back I was given a completely pointless nerve block that hurt like hell and wasn’t even in the right area. If the block’s not done in the right place to start with, it won’t tell you anything about whether you have PNE or not. And even with people who definitely have PNE, blocks done correctly don’t always give relief so it’s not definitive.

Does the lyrica help much?

I’m afraid I don’t know what might cause scar tissue, but maybe the scar tissue itself is pressing on the nerve?

I could be barking up the wrong tree completely but the intensity of your pain & the way it doesn’t respond to much reminds me of a lady I got in contact with through the VPS. She travelled to France to have successful surgery for pudendal nerve entrapment. This is the VPS page about it: http://vulvalpainsociety.org/index.php?page=pudendal-nerve-entrapment-pne. It wouldn’t hurt to maybe get in touch and compare notes.
avatar
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 32
Location : UK

View user profile

Back to top Go down

Re: arora's long painful story

Post  notavfan on Tue Jan 24, 2012 4:07 am

Sorry to hear what you have been through! I know it is very very frustrating!

Are you finding the Lyrica helps? That is my next drug to try once I get off the damn hell of Cymbalta.

Do you ladies know if the nerve blocks are only good for nerve entrapment? My doc had mentioned this option, but hearing how painful it is, I don't want to waste my time if its of no use. My pain tolerance is LOW!

notavfan

Posts : 16
Join date : 2012-01-02

View user profile

Back to top Go down

Re: arora's long painful story

Post  AroraNightfire on Tue Jan 24, 2012 4:58 am

The MRI I had last spring said my pudendal nerve was NOT entrapped. This person in NYC who did the MRI used special imaging to see the nerves. She only found scar tissue.

My anasthesiologist says I dont have pudendal neuralgia because if I had pudendal neuralgia it would hurt for me to squat down....and squatting brings relief. She beleived that some nerves were damaged in my vulva because of the scar tissue and she thought that s1s2 nerve root would block those smaller nerves in my vulva from making me feel pinching and rawness. Nerve blocks are not done just for nerve entrapment
avatar
AroraNightfire

Posts : 40
Join date : 2012-01-20
Location : Cape Cod Massachusetts

View user profile

Back to top Go down

medications

Post  AroraNightfire on Wed Feb 01, 2012 2:32 am

If I wasn't on lyrica I wouldn't be able to walk around without being 100% miserable. I don't even think I would be able to work. I would be feeling constant kneedles stabbing my lips and v entrance. I couldn't function also the rawness would be out of control. The lyrica doesn't provide enough releif but it does make me feel less frequent kneedles. The cymbalta does help me for a few hrs while im at work. Unfortunately I still experience a lot of discomfort and pain if I were to pee and wipe. I try to avoid using the bathroom at work. I work shorter shifts 6hrs. So I just don't drink much till the end of thr shift. I live 10min from my work. I just wish things could be the way they were before I ever became sexually active. I guess that may never happen.

Im going to see my anasthesiologist tomorrow I don't know what to say to her anymore. Im not getting enough relief with lyrica and cymbalta. Its just not enough so that I can sit without pain without having to sit on a frozen gelpack.
avatar
AroraNightfire

Posts : 40
Join date : 2012-01-20
Location : Cape Cod Massachusetts

View user profile

Back to top Go down

Re: arora's long painful story

Post  mary jane on Fri Nov 22, 2013 12:44 am

have you ever had any accidents as a child? a fall can cause scar tissue. when I was 5, I fell on my bits and I remember seeing a lot of blood Sad
avatar
mary jane

Posts : 328
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

Re: arora's long painful story

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum