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» 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

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» 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


My story: Please help and thank you for this site!

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My story: Please help and thank you for this site!

Post  jmcmil on Sat Jul 07, 2012 3:29 am

I am 36, almost 37 yrs old. I reconnected with my high school boyfriend from 20 yrs ago and we had a sexual encounter and he was very rough and I bled afterwards. It had been 3 yrs since I had had sex with anyone and I am tight in the vaginal area. That’s when my nightmare began. This was last Thanksgiving (Nov 2011), 7 mos ago and I haven’t been the same since. I had pain afterwards that never went away. I went to my gyno and was tested for STD’s, all negative and I had a biopsy of skin which revealed lichen schlerosis. I was tried on a variety of steroid creams, even a compound cream and none of them took the pain away. I was prescribed Amitryptaline 50 mg at night. I tried over the counter Candula cream, Cortisone cream, and a variety of others. My pain is a burning sensation all of the time. I then went to a dermatologist, which he gave me a steroid shot and some more creams, none of them relieved my pain. He would hardly even look down there and acted embarrassed. At times I felt like the creams helped, however other times the creams did not relieve the pain and the burning continued. I then went to a gyno who specialized in vulvodynia 3 hrs away to be diagnosed with generalized vulvodynia. I had to fight back tears because I had researched the diagnosis and I did not want to hear it. He increased my Amitryptaline to 75 mg a night. For about a week, the medicine helped and I thought I would be pain free.

Then the pain came back the next week. I am miserable. I am so blessed to be able to work from home, however I sit in a pair of boxers with no underwear and sit on ice packs all day. I feel like someone took a heating iron to my vagina. Also, I feel like something is sticking me down there alot. I do daily vagina checks and can’t understand why I feel pain when it looks normal down there. Then at times, I’m blood red for no reason. The only time my vulvodynia is better is when I am on my period. I don’t understand that. Also, I have pain near my rectum area or the area between my vagina and rectum (perineum area). Today, I have a new boyfriend who is supportive, as well as my parents. I feel so isolated because I can’t talk about this with just anyone so I am so thankful to find this site. I feel like my vulvodynia rules my life. I have decreased my Amitryptaline back to 50 mg at night b/c I was so tired during the day. I can’t tell a difference from the decrease. I have pain regardless. I will give anything for any suggestions to help me be pain free.

I know everyone is different and has to find their own cure. Has anyone tried acupuncture? Does anyone else feel better during their period? Any feedback would be greatly appreciated!! Thank you so much!! I can’t imagine being pain free again!

Jackie


jmcmil

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Pain Relief

Post  evanrude on Sat Jul 07, 2012 4:08 am

Hi Jackie,

I'm so sorry to hear that you're suffering. It is so unfair. I'm lucky compared to some of the women I've read about.
My pain is pretty mild. I haven't sex in three years. The last time I tried it hurt really bad and that's when I found out
that I had vulvodynia. I don't know if it will ever go away, but I'm trying to stay hopeful. I'm too scared to have sex
again because I'm afraid it will hurt and that will just re-confirm that I'm still not better.

Anyway, my pain is usually worse when I'm on my period. Sometimes I don't notice the pain and I think maybe it's
gone for about a month. then it comes back. I don't think it is as bad as when this first started about 3 yrs ago.
I just hope it will go away on it's own one day. Since this first started I've become better at accepting it and
not so depressed about it. I've tried may things but the only thing I really do for it now is:
Take calcium caltrate daily, try to heathy, take a liquid probotic and put Aquaphor ointment on everday after I shower.
For me, it works better than vaseline or anthing else I've tried.
I keep thinking that vulvodynia must be caused by some imbalance in our vaginas.
Hopefully some doctor will figure it out soon so we can all get relief.
I pray for every woman out there who is suffering with this. It's nice to have a place to talk about it with others that can relate.

Please stay posutive. There has to be an answer out there somewhere.

evanrude

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Thanks

Post  jmcmil on Sat Jul 07, 2012 4:26 am

Thank you for your supportive feedback. I will look into some of the things you listed to try. I am desperate to try anything at this point. I try to stay positive and am thankful for my good days. Most posts I have read on this site are related to sex and although I am definitely not interested in having sex when I am burning, I have a constant most all of the time. Sitting on ice seems to numb it, however I dread having to get dressed and go out because I never know if I am going to burn or not Sad I pray that the docs find a cure and that everyone on this site gets healed.

jmcmil

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A Chiropractor has helped me!!!

Post  KathyH on Sun Jul 08, 2012 4:20 pm

Hi Ladies,

My problem started in January this year after I had a hysterectomy. I was in pain from 4 days after the operation and I was examined by so many Doctors and none had an answer as to why I was feeling what I was feeling, they all said the same that they couldnt fine anything wrong. In the end I was in suc h a state that they admitted me and did a second operation as they thought there maybe some scare tissue causing my pain, this done I was still the same. My GP told me that I would have to get used to the new feelings I had down there and that it would become the norm, and that when I felt pain when out walking I should stop and listen to the birds singing and then I would forget about it, what a joke, dont know how you forget about a burning hot neddle sensation digging in your bits!!! I have since changed my Doctor.

I saw my Gynecologist again last month and when I explained all my symptons he said he thought it may be nerve entrapment in my back due to the position I was put in during the operation and that he would send me for an MRI scan and then to see the back Doctor. While waiting for these appointments I took matters into my own hands and went to see a Chiropractor, who said she thought my Gynecologist was probably right about my back. She as very wary as to what treatment she would do but used some special blocks and light manipulation and I am delighted to tell you that I am 80% better!!! so much so that my husand and I even had intercourse for the first time since before my first operation, and the lubrication we used didnt sting, I couldnt believe it
as every cream, lotion and gel I had used to try and sooth my pain only made it worse. I know every ones situation is different but I would say that going to see a Chiropractor may be an option you could try, who knows, it might just do the trick and its certainly worth a try.

I wish you all good luck and hope and pray that you all find an answer to your problem very soon. God willing the medical profession may come up with an answer before long so no other woman has to suffer this terrible complaint in the future.

KathyH

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Re: My story: Please help and thank you for this site!

Post  jmcmil on Mon Jul 09, 2012 2:43 am

Hey Kathy,

That's great that a chiropractor helped you!! I used to see one years ago and maybe I should go see one again. The problem is that I live in a rural town and our chiropractors wouldn't know what vulvodynia is, however I could go and not mention vulvodynia to see if it helped. Anything is worth a try..thanks for the info and your supportive reply. I wish you the best of continued success! I pray too that the docs find a cure because there are so many women affected..

Take Care,
Jackie

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Re: My story: Please help and thank you for this site!

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