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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

Hello!

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


Hello I'm newly diagnosed too!

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Hello I'm newly diagnosed too!

Post  Annmaria on Sun May 01, 2016 5:54 pm

Hello everyone I am so happy to have found you!
I'm a 56 year old woman recently diagnosed although I suspect I have had this a long time but it has crept up on me.
I first noticed painful sex with a partner who lived away (about 4 years ago) and who I only saw about every month. I thought my problem was 'tightening' because I didn't have intercourse so frequently plus I was newly through the menopause. He wasn't at all sympathetic to my pain and suffice to say that was the end of that relationship! I would have cystitis and vaginal pain for weeks after but it did subside to a manageable discomfort (eventually)

I started a relationship just over a year ago and found the same problem only this time worse. I was convinced I had an STI but rigorous and repeated testing ruled everything out including herpes which I was convinced I had! Since this encounter my symptoms have got worse and I'm sure the intercourse has made it worse. Yesterday I had the Q tip test and nearly hit the ceiling! I hadn't realised one small localised area could cause such pain! I have had a year of sheer anxiety and now I have to try to learn to relax and manage my condition.

I wanted to ask if any of you out there are postmenopausal and/or had any similar experiences? I don't take any medication although I have been given some anesthetic cream to apply.  I am looking forward to being part of a community here and hope that I might be able to offer support too. I'm in the UK by the way!
Thank you Ax

Annmaria

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Re: Hello I'm newly diagnosed too!

Post  fairlight10 on Sun May 01, 2016 6:22 pm

Hi Annmarie I am postmenopausal and diagnosed with vulvar vestibulitis 4years ago. After going to the doctors many times I went and saw a consultant gynaecologist privately. He told me what my condition was called. He gave me amitriptyline but I had an adverse reaction to this. Went back to my GP told her who I had seen and what the consultant told me I had. She put me on nortriptyline which suited me. It has helped me tremendously and I would recommend you try it. Have you had all other possible causes ruled out by a gynaecologist?

fairlight10

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Re: Hello I'm newly diagnosed too!

Post  fairlight10 on Sun May 01, 2016 6:23 pm

Hi Annmarie I am postmenopausal and diagnosed with vulvar vestibulitis 4years ago. After going to the doctors many times I went and saw a consultant gynaecologist privately. He told me what my condition was called. He gave me amitriptyline but I had an adverse reaction to this. Went back to my GP told her who I had seen and what the consultant told me I had. She put me on nortriptyline which suited me. It has helped me tremendously and I would recommend you try it. Have you had all other possible causes ruled out by a gynaecologist?

fairlight10

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Re: Hello I'm newly diagnosed too!

Post  Annmaria on Sun May 01, 2016 7:32 pm

Hi Fairlight

Thank you for the reply it's nice to be here with others and I feel less alone.

I have just had the STI testing to rule those sorts of things out. I just assume it must be to do with the menopause but apart from that I have no idea. I was told I could try Amitryptline so I could make an appointment and ask about the nortryptline but I thought I might try diet and perhaps acupuncture first. At this stage I'm not really sure it's all so confusing!
I suspect it is going to be a bit of trial and error...

Annmaria

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Re: Hello I'm newly diagnosed too!

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