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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


Back pain, burning feet and vulvodynia....all related?

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Back pain, burning feet and vulvodynia....all related?

Post  criv01 on Sat Jul 07, 2018 9:01 am

So I'm laying here awake for the third night in a row. But am trying to make sense of it all. I have noticed that whenever my vulva pain is bad, I have a pins and needles/burning sensation on the bottoms of both of my feet. I Googled the pins and needles and found that people had sciatica or some lower back problem.....my vulvodynia began after giving birth (my first and only)....the last month of pregnancy was excruciating lower back pain, where walking became nearly impossible. Then when giving birth, it felt like my back was breaking. I could then barely walk for 3 weeks afterwards....so my question is, has anyone found that lower back trauma caused the vulvodynia for them??? And in turn, solving the lower back pain elevate the vulva pain??
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Re: Back pain, burning feet and vulvodynia....all related?

Post  aspaceodyssey on Wed Aug 29, 2018 2:53 pm

sounds like it could be pudendal neuralgia: http://www.beyondbasicsphysicaltherapy.com/our-services/pudendal-nerve-neuralgia

maybe physical therapy would be a help to you. I loved physical therapy (for general pelvic floor dysfunction) and felt like it gave me so many great insights about my body and exercises and tools that I still use and benefit from to this day. so I would be inclined to suggest starting there! I know there are also some kind of nerve block injections that are supposed to be effective for pudendal neuralgia. I don't know a ton about that but you could start the conversation with your doc and go from there.

be well! keep us posted!

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Re: Back pain, burning feet and vulvodynia....all related?

Post  mary jane on Fri Oct 05, 2018 7:28 pm

criv01 wrote:So I'm laying here awake for the third night in a row.  But am trying to make sense of it all.  I have noticed that whenever my vulva pain is bad, I have a pins and needles/burning sensation on the bottoms of both of my feet.  I Googled the pins and needles and found that people had sciatica or some lower back problem.....my vulvodynia began after giving birth (my first and only)....the last month of pregnancy was excruciating lower back pain, where walking became nearly impossible.  Then when giving birth, it felt like my back was breaking.  I could then barely walk for 3 weeks afterwards....so my question is, has anyone found that lower back trauma caused the vulvodynia for them??? And in turn, solving the lower back pain elevate the vulva pain??
I had lower back pain and excruciating coccydnia when my vulvodynia started ... both these symptoms have dissapeared mysteriously

I doubt you have pudendal neuralgia like the above user suggests, that is only a possibility if you had severe tearing during birth.

When you start having pain somewhere in your body and this pain expands or moves around it's a sign of central sensitization. You can look it up. It can be treated using exercise and medication like amitriptyline or pregabalin.

You can also try seeing a physio. Yes, there are some nerve roots which travel from the back and end up in the vulva region, so they are related. It is possible to get, for example, a nerve block likke a caudal epidural and kill two birds with one stone: back pain and V.

See a doctor first and get their opinion. Maybe a neuro ?

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Re: Back pain, burning feet and vulvodynia....all related?

Post  lindsey_taylor on Sat Oct 20, 2018 3:50 am

I have to just say... This being my second time having vulvodynia, the pain in my feet is much worse this time. If I am up on them for any length of time, and I usually am due to my job, it genuinely feels like I have been jumping up and down on concrete all day. Amitriptyline never really helped me. Sad

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Re: Back pain, burning feet and vulvodynia....all related?

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