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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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 …

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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 …

Comments: 22

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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 …

Comments: 0


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!

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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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