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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 7

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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


Can anyone else not have sex AT ALL?

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Can anyone else not have sex AT ALL?

Post  searchingforacure_ on Sat Apr 29, 2017 7:04 pm

Hello,

I have struggled since I was 15/16 with vulvodynia and it was always annoying, but it never prevented me from having sex until about a year ago when I had a serious flare up. Since then, I haven't been able to have any sexual activity at all....if anyone else has gone through this, how did you cope? Were you able to find a partner still? I feel so hopeless...

searchingforacure_

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Re: Can anyone else not have sex AT ALL?

Post  Dora The Explorer on Sun Apr 30, 2017 6:00 am

I don't wish to dishearten you, but I am no longer able to have sex. Maybe someone else has found a way around the pain and can offer some useful advice.
I had to have a cervical smear earlier this year and I was crying out in agony.
I was given these things to try, they are like plastic penis' in varying widths, the first being about the size of a finger, progressively getting bigger, until "normal" penis width. You're supposed to lubricate them and gently insert them into yourself when you are relaxed and comfortable, so that you break away from that initial "freeze"\frightened of the pain response.
The theory sounds good, but I'm to afraid to try.

Dora The Explorer

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Re: Can anyone else not have sex AT ALL?

Post  Dora The Explorer on Sun Apr 30, 2017 6:45 am

My story likely starts from birth. As a baby apparently my mum couldn't get rid of my nappy rash, the only thing that would help was metanium, sudocream didn't touch it. As a teenager, I believed I had a lot of thrush, so used canestan like it was going out of fashion, especially as I got older and started having sex, after sex I would itch horrendously.
Once I started living with my husband, and having sex more regularly I really regularly would use canestan. Then it turned from itching to pain, to the point it was like I was being raped. Then I sought help. I was diagnosed with vestibulitis, but I think all the creams I was prescribed also irritated my skin. My skin is sensitive at the best of times, so I seem to have eczema and vestibulitis. I itch constantly and haven't tried sex for 3 1/2 years.
I don't have the constant daily pain that others describe, I itch constantly, and scratch the itch so tear myself apart and have pain that way. And if anything touches one of the 4 glands that surround my vagina, it's like I've been touched with a red hot poker. Last time I had sex the pain was horrendous, and my last smear confirmed that it still would be.

Dora The Explorer

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Re: Can anyone else not have sex AT ALL?

Post  chancesunny on Thu May 04, 2017 9:18 pm

Physical therapy is key!!! I had pain during sex for 3 years and I also felt hopeless. After literally years of research and trying every kind of medication, I found a physical therapist who specialized in relaxing muscles by applying pressure with her fingers to my pelvis area. She also trained me on how to release my pelvic muscles which was exactly what helped me with my vaginal pain. The sad thing is that a lot of women don't like to have anyone touch them in the way that they need to get better. It is extremely painful in the beginning but it is so eye opening. I completely recommend physical therapy to anyone having painful sex. I used to not even be able to put a tampon in and now I'm having painless and wonderful sex. I do still have some pain time to time but I know what to do to release those muscles and calm myself down. I hold all of my stress in my gut so that's why the pain came on - I was going through a very stressful time at work. Good luck!

chancesunny

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I can't

Post  Gill on Sat May 06, 2017 7:56 pm

I can't have sex.

There are two main things I do to tackle it:

- My husband and I went to a great psychosexual counsellor who talked about 'other things' we could do in the bedroom, and that helped a lot. We've been together for 3 years since finding out.

- I keep on researching and going to Drs and reading forums etc. I had some improvement from PT, enough to be able to put in a tampon. Had partial vestibulectomy a few months ago (mine is provoked and localised, so am an excellent candidate), and had further improvement, but still not enough for sex. I'm not giving up hope yet; dr says it might get better with more healing. Otherwise hope to push for more surgery.

Gill

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Big fat nope to sex

Post  KaseyT85 on Wed Jun 07, 2017 1:52 pm

I used to be able to have sex, but now it is just too painful.
I am about to commence using the dilators for physical therapy to try and retrain the muscles.
Also, I have been diagnosed with a dermatitis in addition to the vulvodynia so I am using steroids, soap free aqueous cream in the shower and barrier cream.
I am hoping to see results over the next couple of months.

I would suggest trying to obtain a referral to a vulval clinic for them to review what might work for you.

It is a terrible condition, I wouldn't wish it on anyone. Not only physically, but mentally as well.

Best of luck Smile

KaseyT85

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Re: Can anyone else not have sex AT ALL?

Post  mary jane on Wed Jun 07, 2017 2:31 pm

Dora The Explorer wrote:My story likely starts from birth. As a baby apparently my mum couldn't get rid of my nappy rash, the only thing that would help was metanium, sudocream didn't touch it. As a teenager, I believed I had a lot of thrush, so used canestan like it was going out of fashion, especially as I got older and started having sex, after sex I would itch horrendously.
Once I started living with my husband, and having sex more regularly I really regularly would use canestan. Then it turned from itching to pain, to the point it was like I was being raped. Then I sought help. I was diagnosed with vestibulitis, but I think all the creams I was prescribed also irritated my skin. My skin is sensitive at the best of times, so I seem to have eczema and vestibulitis. I itch constantly and haven't tried sex for 3 1/2 years.
I don't have the constant daily pain that others describe, I itch constantly, and scratch the itch so tear myself apart and have pain that way. And if anything touches one of the 4 glands that surround my vagina, it's like I've been touched with a red hot poker. Last time I had sex the pain was horrendous, and my last smear confirmed that it still would be.

the ithcing sounds like neuropathic itch. Have you ever taken medication for this? They used to treat this condition with alchohol nerve killing injections

here is the link:

http://www.atlasofpelvicsurgery.com/1VulvaandIntroitus/9alcoholinjection/chap1sec9.html

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Re: Can anyone else not have sex AT ALL?

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