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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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: 8

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 …

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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

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


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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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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