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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: 4

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 …

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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

Any good consultants in the UK?

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Any good consultants in the UK?

Post  natbyte on Sun Jun 02, 2013 7:27 pm

Hi, I am new to this site. Probably like many of you I was misdiagnosed with reccurent thrush for 12 years. I was diagnosed with Vulvodinya after having my first child (it took a very long time to get pregnant as sex has always been painful.) Both of my pregnancies I have experienced no vaginal pain throughout the pregnancy. Since having my second child I have been in pain for over a year, sometimes I have a week of comfort in a month, but not much more than that. I was wondering if anyone had simelar experiences after child birth, or if there are any really good consultants out there?



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Re: Any good consultants in the UK?

Post  Tashie999 on Mon Jul 29, 2013 5:29 pm

Professor Wendy Reid in London is very good. Was the first out of all the specialists I saw to acknowledge that I had a problem rather than just assuming a STD or that it was in my head.


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Re: Any good consultants in the UK?

Post  Elc88 on Thu Aug 01, 2013 9:02 pm

Only Drs I have seen are on the NHS. I have seen two specialists. The first diagnosed me as vulvodynia, and told me to come back every 6 months for a chat to see if there's anything new we could try. It didn't get me anywhere, as she'd literally smile, nod and tell me to persevere and come back in 6 months...

When I moved I was referred to Dr Manzo in Cambs, and she was very proactive. The impression I got was that she doesn't believe in vulvodynia, and didn't settle until we found the underlying cause of the pain.


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Re: Any good consultants in the UK?

Post  Muffster on Thu Sep 26, 2013 12:04 pm

Dr Wendy Reid at the Royal Free is excellent. I've been through years of seeing consultants, been sent packing with anathestic gel. I've had Physio too and it didn't work. Wendy referred me to one of her physios who has been doing trigger point therapy AND its working! Had I only known 5 years ago that my burning, often thrush like pain and soreness was related to exceptionally tight and knotted muscles! This had all happened after a 2 bouts of urinary infection.They are really good at the royal free, my womens Physio referred me to a normal Physio too who did loads of work on my really tight hamstrings-these and my weak glutes were causing me to hold more tension and pressure in my pelvic floor which were adding to my problems-an important holistic and simultaneous approach. Appallingly my Physio told me that pelvic and vaginal pain is NOT on the syllabus for medicine, even if you specialise in gynaecology, unbelievable! Especially given the number of appts so many have had with different specialists, trying to get to the bottom of things. Wendy Reid has specifically researched and studied it, which is why she is a leader. She is really empathetic too.


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Re: Any good consultants in the UK?

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