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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

Getting to the point of wanting to End Everything ADVICE NEEDED

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Getting to the point of wanting to End Everything ADVICE NEEDED

Post  SoHelpless on Mon May 14, 2018 10:39 am

Good morning everyone.

I am at my ends here, from suffering with a unknown pain for the last five years of my life it's really taken a toll on my mental health. So finally I've got enough courage to ask for advice here.

I am currently 19 years ago and five years ago I suffered from a chronic vulvar pain, usually sprouting from sitting down in school all day in those horrible hard chairs. I suffered in silence for the most part eventually bringing up the courage to go for a physical exam only to be told that IM FINE?! I for one do not like this as I want there to be something you know? I want to be diagnosed and given medication so I can live my life again. Then at last 3 years into this I felt free, I was pain free! But to no surprise I got a urine infection and after that well it came back. full force, went to the doctors again telling me nothing was wrong no infections yet she even stated I looked inflamed down there. my mother is no help bless her she simply cant understand and she thinks that I am doing it to myself by thinking there is pain there when there isn't but I just know there is. I can understand that my brain my make the symptoms a thousand times worse but it's still there. Please ladies, people on here who have suffered help me identify what it is I have and how I can manage it so I can live my life again.

My symptoms are this:

Burning towards end of urination
I have noticed that during the end of urination I feel almost crampy and get a horrible tightness
Inflammation from sitting all day (I have no choice this is my work)
Sex is painful (most of the time)

Please understand that this is no infection I have had several tests done, nothing has been found. Why am I feeling like this?? is this a type of vulvodynia?

The pain isn't agonising but it is enough to constantly be on my mind. I cant speak to anyone about it IRL

Thank you


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Re: Getting to the point of wanting to End Everything ADVICE NEEDED

Post  fairlight10 on Mon May 14, 2018 6:49 pm

Hi Sohelpless. It sounds all too familiar. I also have vulvodynia, vulvar vestibulitis to be precise. I was also very red in that area. Numerous doctors told me I had thrush, UTI, atrophic vaginitis.The medications I was prescribed just made it worse. Saw a gynaecologist privately and within ten minutes he diagnosed vulvodynia. Saw him again on the NHS where I had a hysterscopy ,removal of lost Morena coil and vulvarscopy. He then diagnosed vulvar vestibulitis. I was prescribed 20 mgs Nortriptyline which I still take every bedtime for the last 6 years. This gave me the relief that I needed to get my life back. I can now sit on a chair. I have a cushion with a hole in the middle for when I drive my car. I had 20 sessions of acupuncture which helped with the emotional stress that this condition can cause. Stress makes this condition worse, getting upset and being unwell. Keep drinking water to take the sting out of your urine. Acidic foods and drinks will cause your urine to burn when you urinate. Check out UK vulvar pain society. They have useful information on their website. Show this reply to your mum, she may start to understand that this is not your fault and is actually not that uncommon. It's just people don't want to talk about it. Some doctors don't even know of the condition. Go back to your doctor and tell her this is what you believe you have. She may try you on tricyclic antidepressants used in their low dosage they are effective for pain relief. She can try you on some topical cream. Ask to see another doctor if she is unable to help. I wish you luck and keep in touch with your progress


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Re: Getting to the point of wanting to End Everything ADVICE NEEDED

Post  jungleclover on Mon Jun 04, 2018 10:38 pm


I am 23 and had symptoms that started when I was your age. Today I am symptom-free and have sex normally. My issue was the result of a semen allergy and infection after infection due to the fact that no one knew I was allergic.

As a result of my experience, I will be applying to physical therapy school where I intend to specialize in women's health. Right now I work as an aide in a physical therapy clinic that does women's health and to me, it sounds like you could really benefit from a trip to a women's health physical therapist. My recommendation would be to try to get in with the vulvular specialist from the gynecology unit of your healthcare provider. They will have a ton of useful resources for you and hopefully have a better idea of what's going on. At this appointment, it may benefit you to discuss the possibility of women's health PT or possibly an antidepressant like gabapentin to quiet down those pesky nerves. I'm sure your MD will have some ideas as to what could help you. Because I'm only an aide I don't have a ton of insight into what's going on with you but I know that pt is helpful for reducing overactive nerves, helping muscles to relax, and returning to normal functionality.

Reading your message reminds me of when I was your age and had no idea what was wrong with me. It is such a terrible feeling and it is so difficult to navigate medical institutions and get the help you need. I am wishing you all the best. I believe you that it is painful and as someone who works with women with vulvodynia vaginismus and the like I can tell you that you shouldn't feel that way and you shouldn't have to live that way. You will get better!



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Re: Getting to the point of wanting to End Everything ADVICE NEEDED

Post  sarisbaris on Tue Jun 05, 2018 2:44 am

I'm so sorry for you suffering. I battled V for 15 years and it was a nightmare. I'm healed now. My heart always hurts reading these posts Sad I healed myself using fruits/vegetables as medicine and some herbs/supplements.

I followed the protocol by Anthony William. According to him, pelvic inflammation is caused by an unknown/currently undetectable strain of strep. This strain also causes UTIs. So I'm guessing your battling strep. Although, I would do one protocol for herbs for the strep and another for the pelvic inflammation. It's also going to require you remove the foods that feed these viruses.

Here's my blog:

I have noticed most of the women I talk to with V also have UTI issues, so I added a UTI section:

Please don't give up! Just keep trying stuff.


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Re: Getting to the point of wanting to End Everything ADVICE NEEDED

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