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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 …

Comments: 3

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

Help please!

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Help please!

Post  NicolaMc on Wed Aug 01, 2018 3:36 pm

I was diagnosed 5 years ago after several months of being prescribed treatments for thrush by different doctors.

The pain I experience is both provoked and unprovoked. It feels like burning or like a sharp needles stabbing into me. These pains happen regularly and sometimes simultaneously. I feel it in all parts of my vulva. It tends to be worse as the day goes on and around my menstrual cycle (getting worse the week before my period). Sex and arousal provokes it, orgasms are particularly painful.

I tried drugs- amitriptyline, pregabalin and gabapentin over the course of the two years following my diagnosis. None of them had any significant impact and the side effects were hard to cope with so I stopped taking any.

I have seen a physiotherapist, osteopath, chiropractor and two acupuncturists. I've tried various topical creams, use lidocaine, Epsom salt baths, Botox injections, adapted my lifestyle where possible (sit properly, avoid walking in the heat, wear cotton underpants, avoiding tampons), doing exercises every day, keeping a pain diary, using dilators, perennial massage, a variety of vitamin supplements, the low oxalate diet.

Here's what has a positive impact.
Lidocaine (relieves burning pain)
Distraction (TV)
Baths and showers (while in them)
Resting after exercise
Sleeping well

Other than that, it can vary in intensity but it's basically always there. If you are in a similar situation to this then I don't need to describe the impact that it has on your emotions, life, sex and relationships. I have a doctors appointment this week and I don't know what to ask for next. If your experience is similar to mine then please share any suggestions for what I can do.



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Re: Help please!

Post  emalita on Thu Aug 02, 2018 3:58 am

I'm so sorry to hear that you're in such pain.

I know you mentioned that you've followed a low oxalate diet, but have you done a true full blown elimination diet? I was convinced for years that my worst pain was at my vulva or vagina, but I now realize it was severe bladder irritation due to foods (oranges, orange juice, stimulants, etc.) and supplements (B6, D-Mannose, etc.).

The reason I ask is because you mention a sharp needle-like pain, and that is just like what my pain was. The bladder is literally right on top of the vagina, and the urethra is crammed right at the opening. The needle-like pain felt like it was all over my vestibule and deep in my vagina. Plus, my pain flared horribly before and during my periods.

This may not be your issue, but please consider it. I don't believe I have interstitial cystitis (but that's just another generic diagnosis saying "we don't know why you hurt"), but the IC community talks about a poking pain all the time. So clearly the bladder and urethra put out that type of pain signal.

I hope you find relief soon!


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Re: Help please!

Post  NicolaMc on Thu Aug 02, 2018 9:34 am

Thanks for your reply! That's a really helpful suggestion. Bladder problems are an area I've never looked into- like you, I've always thought it was all to do with my vuvla or even my pelvic bones and muscles. It's definitely another thing I can explore.
Thanks and take care.x


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Re: Help please!

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