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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: 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: 8

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

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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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