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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5


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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