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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: 3

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

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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: 6

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: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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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