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» Lichen Sclerosus
Yesterday at 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

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

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


New here and in need of a pick-me-up

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New here and in need of a pick-me-up

Post  horsejumper on Thu Dec 04, 2014 1:37 am

Hi everyone,

I'm new here (but not to V, sadly). I wanted to share my story and see if anyone is has been in the same boat.

The first time I tried to use a tampon (I was around 13), putting it in was OK. Taking it out was absolutely agonizing. 9/10 pain. I've never used a tampon since. When I was around 15, I went to the gyno for probable ovarian cysts. Again, the internal exam was agonizing, but the doctor didn't say that it wasn't normal to be in that much pain. Had sex for the first time at age 19. It was OK. More soreness than the burning pain that accompany tampons/exams, and some deeper internal pain, but not enough that I stopped. Shortly after, I went to get my first annual, and my new doctor told me being in so much pain for the exam wasn't normal. He referred me to a very highly regard medical school's specialist for vulvodynia.

At this time my only symptoms were burning provoked by touching the vestibule and very occasionally unprovoked burning. My specialist did the Q-tip test, which I failed with flying colors--no pain on thighs, labia, etc., but everything inside Hart's line was bad. 5-9/10 bad, depending on the spot. Started me on amitryptiline, where I noticed some improvement and had the only pain free annual (with full sized speculum!) of my life. Improvement halted and she started me on gabapentin, too. I didn't notice much of a difference with that.

Last spring (2014), I saw a partner of my normal gynecologist who I'd never seen because I was having cyst pain and needed to get in right away. Cyst confirmed on R ovary, but more relevant is that he said he had great success with doing submucus lidocaine/methylpresinisolone injections directly into the vestibule. I thought "Why not?" and did the recommended 3 rounds of injections in 3 weeks. First round caused the entire vestibule to go numb--I couldn't tell when he was/wasn't touching me. That faded after some hours, and the remaining two rounds didn't do much.

At that same time, I began to have burning just before and especially after (but not DURING) urinating. I was so convinced I had a bladder infection that I had 3 urinalyses done at different doctors, and everyone said no bladder infection. Also, my clitoral area became more tender than normal to the touch, and after a few months, tender turned into painful. Touching it (even just the hood) is tender-painful now, even when I'm gently cleaning everything (water only) in the shower.

Saw a new specialist at the beginning of November. I was diagnosed with IC (although I don't have bladder symptoms, only urethral), confirmed vestibulitis and pudendal neuralgia, and added pelvic floor dysfunction (the only doctor to EVER consider an internal contributor to my pain). I started some meds for IC and am continuing on my amitryptiline (I've been on it for 3 years now). Next month I'm going to retry gabapentin. I also am using lidocaine cream in the vestibule as of last week, which HOPEFULLY will retrain the nerves and give me some long-term relief, and I'm seeing a pelvic floor therapist.

After 3 appts with my pelvic floor therapist, she said she noted a difference in color (my vulvar area looked healthier) and notable relaxation of my pelvic floor muscles. This, coupled with a day of no urethral pain, gave me a high today! And then I did a self-exam at home, complete with a Q-tip test. Absolutely no improvement in that regard. It was so painful I couldn't check the whole vestibule. Damn burning.

I just feel somewhat in a different boat than other people. I can have sex (at least I could, I haven't had any [not by choice] since clitoral pain started) with enough comfort to enjoy myself (though not pain-free). I was going with just vestibular burning for years, and then BAM! Clitoral and urethral pain. Honestly, the clitoral pain is what gets me the most right now. Not in that it's debilitating, but it's a worse kind of pain for me...I can handle the burning, which lidocaine also helps, but the tender-pain is scary in that it's not external--lidocaine doesn't do anything, and I can't just push through the pain even if I wanted to.

My new specialist has done a really good job explaining the mechanisms of the pain and what's causing it, and I understand what's going on. I just am particularly down about it right now. I'm 22 years old and just want to at least reclaim my clitoris. I'm not usually down about my condition at all, today was just rough with the elation then letdown.

To top it off, I have piriformis syndrome (related to the pelvic floor dysfunction; if you haven't heard of it, it's a muscle in your butt that the sciatic nerve runs through), and I've been cramping for two days straight after a week of relief. UGH.

End of rant. I really just wanted to share this with someone...anyone!

horsejumper

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Join date : 2014-11-30

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Re: New here and in need of a pick-me-up

Post  Alana3 on Mon Dec 15, 2014 7:58 pm

You sound like me and we have another thing in common- horses! I'm sorry to hear about this it sounds like me except I don't have IC tho it was suspected at one point. It sounds like you have non-provoked vuvlodynia, and I am very sorry to hear it Sad I really dont have any advice, but just to say hi and I know what you're going thru. And the frustration is the worst. Where are you from??

Alana3

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Re: New here and in need of a pick-me-up

Post  horsejumper on Mon Dec 15, 2014 8:29 pm

I'm from Michigan but currently live in New York. Yes, the frustration really is the worst. After living with this for ten years and trying to get it treated for three, I'm just ready for it to be done with!

horsejumper

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Re: New here and in need of a pick-me-up

Post  Alana3 on Tue Dec 16, 2014 12:59 am

What part of Michigan? I hear you just be patient (as if 10 years isn't enough to be patient with) have you seen Dr. Goldstein? He's supposed to be the best up there and he's in New York!!! And D.C. I think you should check that avenue out. I will caution you tho, most specialists don't take insurance, mine doesn't- but it was totally worth it!

Alana3

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Re: New here and in need of a pick-me-up

Post  meelie on Sun Dec 21, 2014 2:10 am

I talked to a spine specialist that told me about a spine stimulator that you can actually try before they insert it. It interrupts the pain signal from getting to your brain. Has anyone ever heard about something like that.

meelie

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Re: New here and in need of a pick-me-up

Post  horsejumper on Mon Dec 29, 2014 7:52 pm

I'm from southern MI. I actually see a specialist in Pennsylvania right now--Dr. Echenberg at the Echenberg Institute for Pelvic and Sexual Pain. He's amazing.

horsejumper

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Re: New here and in need of a pick-me-up

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