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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

Comments: 0

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


Healing is possible

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Healing is possible

Post  Cured patient on Sun Jul 27, 2014 8:51 pm

Hi ladies,

I have been healed of this terrible, debilitating disease for almost one year now. I hope that my story can bring you peace of mind that it is possible to have a rich, fulfilled, and pain free life without vulvodynia.

Like many of you, my story begins with what I thought was a UTI, which then developed into a supposed yeast infection from the antibiotic. The itching literally kept me up at night, with occasional stabbing pains in my vaginal area. I constantly felt raw and I would imagine that it must be what sandpaper to skin felt like. Sometimes it would feel as though acid was pouring out of my vagina. I literally could not think of anything else. I was a prisoner to my pain and I grew more and more depressed with constant thoughts of how I would be able to go through another maybe 60-70 years of life like this (I am in my mid 20s).

I visited at least three doctors before receiving my diagnosis (which actually is not a lot), and the diagnosis in and of itself was relieving because I had suspected vulvodynia from the start. Even after the diagnosis, I shuffled doctors continuously paying absurd amounts of money to be told the same thing (often with little to no compassion).

Throughout my journey, I took topical corticosteroids and anitfungals, oral antibiotics, probiotics, low dose antidepressants, and lidocaine to numb the pain out of my weary vagina. I ceased birth control for three month only to explode in painful ovarian cysts. I was relegated to a wardrobe of long skirts and dresses, not being able to wear underwear or sit for prolonged periods of time. I missed hours upon hours of work going to doctors appointments, spent money I didn't have, and scoured the internet in the little spare time I did. I was so weary, willing to try anything.

Eventually, I started pelvic floor therapy and performed exercises with a gel like cone that to me looked like a scary sex toy. But of course, sex was the last thing I wanted at this time (yet always on my mind). As I'm sure many of you can attest to, the fear of losing your significant other to this awful condition is unbearably frustrating.

Besides my diet and my detergent, I changed my entire lifestyle. I caved to yoga and chiropractic relief. Again, I'd do anything for a respite.

Today, I write this on a bus ride home, a five hour trip is never have been able to complete over a year ago without writhing in pain. On the occasional time there was a break from the physical agony, the mental torture kicked up a notch. I was a broken soul. I wanted to give up.

I'm not exactly sure what the turn around was for me, but I think it was when I decided that my happiness was worth fighting for. The medicine, the physical therapy, etc. served their purpose. But the willingness to let go of the tormenting anxiety and hand it over to God was the paradigm shift for me.

I sincerely pray and am hopeful for all of you that you will find relief and healing. This is such a difficult journey, please please do not give up.

Cured patient

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Join date : 2014-07-27

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