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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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 …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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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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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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arora's long painful story

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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
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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......
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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
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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
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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,
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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.
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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?
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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.
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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.
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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!

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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
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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.
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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
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