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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 …

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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

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 …

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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 …

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Vulvadynia

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Vulvadynia

Post  Linda Williams on Fri Jul 21, 2017 11:53 pm

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These are the medications my doctor has prescribed: nystatin, clobetasol, topiciort. Also lidocaine which insurance would not cover, purchased over the counter which had alcohol in it which was not listed in the ingredients which in turn caused even more burning!! When I saw him last week I was told to stop the topiciort & had a speciality pharmacy make a compound of baclofen, amitripriptine, & gabapentin. I knew it would burn more than likely and it does. This afternoon I discovered one side of the vulva...the edge was very red even a place on my leg. Again not covered by insurane. Anyway I called both my doctor & pharmacy. The nurse said it did not sound like an allergy since the entire vulva was not involved. I was also told other patients use it with no problems. The pharmacy had to consult with the other pharmacy. I do no soaps down there, dye free laundry soap double rinse, no panties at home, loose clothes, well you know the drill. Have any of you ladies used a medication like this??? Sex is not an issue as I am a widow, evenot if I attempted to I couldn't. I like all of you am sick of ice packs &! medication that doesn't help. I do trust my doctor, he is OB/GYN.specialist in urology. He said last resort vaginal injections, talked about biopsy at one time. In the back of my mind wonder if my bladder repair surgery plays into it although he said no. I have 2 slings on my bladder & urethra plush see real other proceures.
Hope to get some good advice!!!

Linda Williams

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Re: Vulvadynia

Post  mary jane on Sat Jul 22, 2017 9:20 pm

Recurring infections like UTIs or bartholin cysts can sensitize the area according to my pain consultant circa 2014 when I saw her. It's not known why.
It sounds like you have either some minor nerve damage from the bladder surgeries or sensitized nerves. I recommend you do a lot of mindfulness and stress reduction to calm your central nervous system down, avoid any other further surgeries if you can and keep taking the medications and/or creams. Nerve pain can and does get better so don't give up hope Smile
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mary jane

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Re: Vulvadynia

Post  Linda Williams on Sun Jul 23, 2017 2:44 am

Thanks for your advice! I have asked if my surgrey could playa part, the 2nd urology doc said no. I also have mesh in there. Silly question how do you accomplish stress reduction? I'be seen many people talk about physical therapy too.
How long have been dealing with this if I might ask and what treatments. Thanks Mary jane.

Linda Williams

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Re: Vulvadynia

Post  mary jane on Sun Jul 23, 2017 7:45 am

Linda Williams wrote:Thanks for your advice!  I have asked if my surgrey could playa part, the 2nd urology doc said no.  I also have mesh in there.  Silly question how do you accomplish stress reduction?  I'be seen many people talk about physical therapy too.
How long have been dealing with this if I might ask and what treatments.  Thanks Mary jane.


MESH? Well no wonder you are in such trouble, poor you. In UK there has been a HUGE scandal revolving around mesh surgeries, they have caused pudendal neuralgia in a lot of women as a result of nerve damage from the surgery. I would go down the medication route if I were you, ..and show your "smart" OBGYN this article:

https://www.theguardian.com/commentisfree/2017/apr/27/vaginal-mesh-women-health-bladders-bowels-sex-lives-nhs-operations

http://www.bbc.co.uk/news/health-39567240


I personally have zero respect for OBGYNs and GPs, I think they should be thrown in a bunker and burnt alive
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Re: Vulvadynia

Post  Linda Williams on Mon Jul 24, 2017 11:35 pm

Does anyone have good questions to ask my doctor about treatment options for this
vulvadynia?
I am really beginning to wonder if my bladder repair, slings, cadaver tissue. The pharmacy that made my compound is remaking it since I had 2 very red places after applications.
I am so tired of doing everything the doc says and still in pain. I feel like I am being experimenting on! I know I am not alone! Would appreciate any input!

Linda Williams

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Re: Vulvadynia

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