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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


Introducing myself :)

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Introducing myself :)

Post  neverlosehope on Fri May 30, 2014 9:24 am

Hi Ladies,

I don't even know where to start with my story. It's so long and involved. I'll try my best though. Perhaps it will be therapeutic?.. Forgive me if my wording is a bit free. I'm just having a chat to you and getting things off my chest. I just don't know anybody with this condition and feel so alone in the world...

However, throughout this whole ordeal i've never given up hope. I try to stay positive and count my blessings. I surround myself with people who fill my heart with joy. I've quit my office job and am currently back at uni studying music, following my passion. In short, I try to make every day count and not let this motherfucker get me down (excuse the french but surely you agree the name fits).

Now, my story -
I'm 33 years old. I live in Brisbane Australia. I started getting pain on my vulva in 2006 and have been to hell and back for 8 years now.
I've seen 5 Gynacologists, 3 dermatologists, countless GP's, Physio's, Chyro's, Naturopaths etc etc...

After trying many different avenues, I eventually opted for surgery in 2009, as I just wanted it over and thought cutting the painful area away would surely work. Back then it was provoked vestibulodynia. There was no generalised constant pain.
I had a full vestibulectomy in January 2009. The particular area which was the source of the pain (6 o'clock, bottom of vaginal opening) did stop hurting and I was almost pain free for about 3 months. Afterwhich a new pain arose, this time at the left side, near the opening to the vestibular gland (3 oclock).
This is the area that still hurts the most today. In addition to that, I now have a constant mild burning, sometimes itching sensation all over the inner skin of the labia. So it's now both provoked and un provoked vulvo/vestibulodynia.

I am blessed in that my pain is not so debilitating that I can't sit or sleep. And am able to have sex if I'm well lubricated, though it's never completely pain free and after a while friction takes it's tole and I have to stop.
Luckily for me my boyfriend is still satisfied, and we find other ways to have a fulfilling sex life. He has not been part of my journey for this whole time. We met a couple of years ago. To be honest, he doesn't know the extent of my history and suffering, as i'm afraid it will affect our relationship, as it has all of my previous ones.
I even had a lesbian relationship for a year, hoping that not having to have penetrative sex will be the answer, but of course at the end of the day we can't control who we are attracted to on the most basic and animalistic level. So That didn't work out...

Back to the facts though, medications i've been on:
Amytriptaline - 10mg a night with some success but in tolerable side effects. I could not function. Was on them for 3 months and stopped.
Nortryptaline - was on 25mg for the past 2 years, now cut back to 10mg as I want to see if they were actually making a difference.
Definitely having withdrawl's, trouble sleeping and the blues... thought they weren't meant to act as anti depressants but perhaps they were taking the edge of a bit.
Lyrica - 50mg a day for 3 months . Some pain relief, however, again, felt like a complete zombie and side effects did not subside. Also gained weight very rapidly. Would consider these again but i'm trying to get my body healthy for pregnancy and these are apparently dangerous if you get pregnant.

I am very sensitive to meds and obviously even very small dosages affect me significantly.

Topicals- Phew, where to start?...
Cortisone creams - all sorts, in all different bases and strengths. Never worked for me. If anything they made things worse.
Estrogen cream - caused severe thrush like irritation. tried those little tablets you pop up in the vagina with an applicator. Same reaction.
Testosterone cream (compound) - tried this to thicken my skin as it was very fragile after the surgery (and still is). It worked for that, but I freaked out and stopped because my clitoris became enlarged. It increased my sex drive immensely too. Now I know how men feel all the time haha... that was the good part.
Anaesthetice - various strengths. Emla burned like hell. Gels don't work for me because of the irritating ingredients in the base. I'm now trying a 5% Xylocaine ointment. It burns slightly on application but that's all. I'm going to try using this once a day for a few days and see if it causes irritation. I'll keep you posted. Would definitely be good for pre sex though I haven't tried yet.
can any of you tell me in their experience if it would numb my partners penis? I would only use a small amount and try to remove any excess. I would use a condom but can't as they pull on my skin and hurt Sad
Over the counter -
Zinc oxide (nappy rash cream), my skin didn't like it. Too thick and caused mild irritation
Bepanthen ointment - same story. Good as a barrier though.
1% cortisone ointment - irritating
Vitamin A cream - same
Lanolin - Bad!
vaseline - was fine as a barrier but I don't like the idea of petrolium down there.
Pawpaw ointment - realised that was mostly petrolium anyway so same story
I'm sure there where others but can't remember at the moment. basically my skin doesn't like anything cream based or thick.

Oils -
Emu oil - very thick and smells strong. made my labia feel sticky
Olive oil - pretty good. Soothing for those itchy days. Make you smell like salad dressing though.

COCNUT OIL - Now ladies, this is where it's at. I love love love it. Make sure it's organic. I use it to soothe and moisturise my skin. It's amazing. It smells divine. AND it's the best lubricant i've ever used. I usually use a bit of 'silk' lubricant as well to make things a bit more slippery. Coconut oil is light, it washes off in the shower, it's edible and really soothing. I highly recommend it for symptomatic relief.

Everyday life - I use nothing with fragrance, only wash with water or sometimes cetapyhl if i'm on my period, My laundry detergent is hypoallergenic and fragrance free, I only wear cotton underwear.


I've been seeing a physio in Brisbane who specialises in pelvic floor dysfunction. She is amazing. If any of you live here i'd be happy to give you her details.
Definitely make sure you address the muscular issues before going for surgery or any invasive procedures. I didn't and I now believe that was my first mistake. I have very tight muscles at the opening of my vagina, within the first 3 cm or so. I try to do stretch whenever possible as that really helps with the pain also and makes you prepared for sex (as much as you can be).
And also mentally remember to let the muscles go. I am constantly pulling up my vaginal muscles so have to consciously let go.

I am now seeing a new gyno who seems to know what he's talking about. he has a special interest in vulvar pain management.
The last procedure i had was an anaesthetic injection into the area behind my most painful spot. It numbed the area for an hour or so but that's all. Enough to know that if that particular area is healed (by some miracle...), i could be close to pain free. With only the mild constant irritation persisting. With everything i've been through i could deal with that.

Now.. He's scheduled me in for another procedure on the 18th of june. Another injection, this time a longer lasting anaesthetic plus cortisone to reduce inflammation.

Which brings me to my question for you - has anyone had this. NOT to the pudendal nerve but to the flesh surrounding the vulva. If so, have you had success? or the opposite, did it make you flare up? I'm really scared it will make things worse. Your advise would be so appreciated.

My gyno says if this doesn't work we may need to look at surgery again. He believes the sore area is a result of scar tissue or a puckered stitch from my vestibulectomy. It would be a very small incision but again, i'm petrified it will make things worse.

Thank you to all you brave women for sharing your stories and for listening to mine. I already feel better having purged on the page.
I'd love to start a little support group in Brisbane if anyone's from here. It would be so great to be able to talk freely about this.

Please stay positive and maintain your fighting spirit. Never give up hope. I know things will get better.

Love and strength to you all
xxx
Netta







neverlosehope

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Re: Introducing myself :)

Post  Leslieg on Mon Jun 02, 2014 5:09 pm

Thank you so much for sharing your story!!!!!
Let us know if the treatment is successful!
Smile

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Re: Introducing myself :)

Post  Alana3 on Mon Jun 02, 2014 6:10 pm

I've had a vestibulectomy it worked really well for me!

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Re: Introducing myself :)

Post  neverlosehope on Tue Jun 03, 2014 4:34 am

Will do Leslieg. Alana - so glad the op worked for you. I'm pretty sure I'm going to have to go in for a correction. mainly because I was not instructed correctly regarding post op care. I wasn't given laxatives after my op so when i went to do a number 2 my stitches ripped. I had a fentons repair as well as a vestibulectomy as my vaginal opening was tiny. my stitches ripped on my perineum and my doctor told me it would heal the same way anyway and not to worry. I believe it changed the tension on the rest of my stitches and surrounding skin, causing it to be very delicate and prone to tearing.

Lesson - If any of you do go for the op. A. make sure you're given laxatives immediately post op, and physio to massage the scar tissue away once healed. I would consider the op a very last resort. I regret having done it as it's changed the appearance of my vagina which i'm now self conscious about, and I believe mine started off as a hormonal/skin issue as a result of going off the pill after many years.

In short my dr whom I trusted was an idiot.

So infuriating...

Has anything worked for you so far leslieg?

Love love, NLH

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Re: Introducing myself :)

Post  Alana3 on Tue Jun 03, 2014 4:14 pm

Ouch yeah my stitches ripped too!

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....

Post  lavrose on Fri Jun 06, 2014 3:19 pm

GIRL!! Coconut Oil!!! Holla!!!! Razz 
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Re: Introducing myself :)

Post  Sebby (Admin) on Mon Jun 09, 2014 11:11 am

Welcome to the forum, hope you do find the right treatment for you soon, it's often a long road but it's good to see your not giving up hope x
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Re: Introducing myself :)

Post  tinkerbelle2 on Wed Jun 18, 2014 9:31 am

Welcome to the forum Smile cheers xx
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Re: Introducing myself :)

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