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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 …

Comments: 7

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 …

Comments: 2

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 …

Comments: 10

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: 1

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: 6

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: 1

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


Can't believe it!

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Can't believe it!

Post  maudie on Fri Sep 28, 2012 10:47 pm

I am 49, and recently diagnosed with vulvodynia. Due to divorce and an industrial accident, I was non-sexual for two years. When I started up again--ow! But I thought, maybe I was getting drier (peri-menopausal) and also was just not used to sex anymore, was on painkillers; it wasn't very good sex on the guy's part, but I stuck with it, and it quickly went away. Then, after a year with this man, I had another year of no sexual activity. I have to take painkillers because of the accident, so its tough to get any kind of orgasm, on my own or with someone else! Lately, I tried sex again with an understanding guy. We tried different lubes, even plain old vaseline, different positions, but it felt my insides were being pierced with thousands of tiny knives. Screaming pain! Tried several times, and the pain was worse, if possible. I became so inflamed, particularly my perineum, it hurt to sit, pee, drive--all the time. I also had knifelike pain at the very top of my vagina, above the clitoris and into the hairline. There is a goodish fat-pad there, but it felt ready to tear apart if I wasn't careful.

Coincidentally, I went to the Dr. for a routine pap (several years overdue). She could not get the speculum in me. Then, I got my diagnosis, and different gels/creams to try, including one for lichenosis. Now I can sit, and it seems my whole lower area has calmed down, and I'm using the pain gel/ointment less. But I don't dare try the whole sex thing, not yet! I'm not cured, although I feel more normal

Thanks to reading your website for many months, I've been practicing loosening my scrunched up lower muscles, back and belly and all between. I never knew I kept so much tension there! I also, with help from my Dr., got better control of my severe and constant constipation (caused by those necessary painkillers) some of which was so painful (stretched and torn perineum)(landing me in the ER just to get the poop out, brrr), that I'm sure it started this rise in my nerve responses.

But now-- I know why my husband of 20 yrs' very small penis seemed quite enough for me. Why explicit pornography made me shudder and wonder-- "how can she do 4 guys in a row, so big, she looks so dry, etc". Why I knew in my teens I could never be a prostitute simply because of the pain! Why I knew bigger could never be better!

I told my younger sister about this. And she was astounded. She is married, has a 6 year old, and has had these same problems since the birth! Her doctor, a woman, just pooh-poohed it, saying, "well, maybe we can do something with dilators" and went on to another subject. So my sister thought she was alone in her pain, and was very surprised by the info I passed on. I am appalled! In 2012! To treat a married woman with a previously lusty sex life so --recklessly. By a woman gyn!

maudie

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Need to ask!

Post  maudie on Tue Oct 02, 2012 8:23 pm

Forgot to ask-- does anybody have concurrent urological symptoms, like: sometimes feels a hesitancy to go, sometimes the urinary tract seems so inflamed! but I get tested and no infection. Urgent need to go often, but no apparent infection. What do you do for this, for comfort or cure?

I read a post here about women using their muscles wrong when peeing, pushing instead of relaxing? I remember being toilet trained to urinate, me crying on the pot, my mom screaming at me to PUSH!!!-- and being completely at a loss as to what I needed to do. It was always PUSH! Finally I pushed it (urine) out. So I've always pushed, and ,man, was I a strong, fast urinator! Also, as a little girl, my perineum ripped a tiny bit several times, for no apparent reason. I'm just all out of sorts in my whosit-whatsits and it seems so complicated. Isn't there just one answer to all this?

And do hormone suppositories help with vulvodynia and vestibulitis

maudie

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Re: Can't believe it!

Post  LillyK on Wed Oct 03, 2012 5:00 am

I have has some trouble with pushing when peeing too and my aunt has told me that my mother used to tell me to PUSH all the time when I was potty training. Apparently it was so bad that I was in tears because my mom wanted me to go at her will, not mine. My aunt even tried to talk to her about it but my mom was adamant. I actually think this may be part of a cause of my V problem! So I can truly relate. I have learned that double voiding really helps me though. And trying to relax and not push.

FWIW, acupuncture has helped me tremendously and so has eating a low acid/anti-inflammation diet. I hope you find something that works really well for you! Hang in there!

LillyK

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Re: Can't believe it!

Post  Aussie on Mon Oct 08, 2012 11:22 pm

maudie wrote:Forgot to ask-- does anybody have concurrent urological symptoms, like: sometimes feels a hesitancy to go, sometimes the urinary tract seems so inflamed! but I get tested and no infection. Urgent need to go often, but no apparent infection. What do you do for this, for comfort or cure?

I read a post here about women using their muscles wrong when peeing, pushing instead of relaxing? I remember being toilet trained to urinate, me crying on the pot, my mom screaming at me to PUSH!!!-- and being completely at a loss as to what I needed to do. It was always PUSH! Finally I pushed it (urine) out. So I've always pushed, and ,man, was I a strong, fast urinator! Also, as a little girl, my perineum ripped a tiny bit several times, for no apparent reason. I'm just all out of sorts in my whosit-whatsits and it seems so complicated. Isn't there just one answer to all this?

And do hormone suppositories help with vulvodynia and vestibulitis


Your urological symptoms could be IC - it is related to vv. Go to the IC Network forum and get on the IC diet as a precaution... It could also be overly tight pelvic floor muscles and not IC at all. Your experience of toilet training sounds awful. Go the a physical therapsit! This could all be your pelvic floor judging by the way your were told to push not relax your muscles!!!

Aussie

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Thank you!

Post  Mish on Tue Oct 09, 2012 11:14 am

I don't have any answers but thank you because I too have urinary problems! I constantly have a urinary tract infection and am just uncomfortable - feeling like I need to pee and then find it hard to pee - just always a irritated - thanks for sharing!! I don't feel so weird!

Mish

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Re: Can't believe it!

Post  Aussie on Tue Oct 09, 2012 10:30 pm

Mish don't drink cranberry juice for the "'infections'' it's highly acidic and will make symptoms worse if it is in fact IC. Stay away from coffee chocoloate and citrus. More detail can be found on the IC Network website Smile

Aussie

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Tough one

Post  Mish on Fri Oct 12, 2012 12:16 am

Thanks so much!! It's really tough because if I don't treat the UTI I end up bleeding in hospital but the preventions (cranberry, ural, apple cider vinegar etc) prevent it when it comes on... Noone seems to be able to balance this... ??

Mish

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Re: Can't believe it!

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