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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

I Cry and Cry

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I Cry and Cry

Post  Peyton on Sun Oct 16, 2011 6:40 pm

Lately all I can do is cry. Ive been suffering for 9 months now, and it seems like every day just gets worse. Recently it got so bad that I couldn't wear pants, then it progressed and I couldn't even wear underwear, couldnt go to work or even walk. I just lay in bed, paralyzed by the pain until I was finally able to see a specialist who put me on medication that seems to help quite a bit with the constant burning and pain, but the good news stops there.

I was ordered off birth control, so with all of the changes in hormones, my face has started breaking out. Also, since going off the pill, I have been losing more and more hair. My medication has caused me to gain 15 lbs in my abdominal region. I have a very slender frame, so 15lbs shows quite a bit, and I look 3 months pregnant and cant fit into my clothes anymore. My medication causes me to be tired round the clock, and no amount of sleep seems to help.

My husband and I are newlyweds, and we havent had sex in 4-5 months! I'm not afraid that he will leave me, but it just adds to my pain that I cant give him what any wife should be able to, yet he is so supportive and kind. I hate my own body. I no longer feel like a woman, but just a box, no organs, no curves, no femininity, just suffering. And how can I even ever had children if this never goes away? Ive wanted to be a wife and mother more than anything in my life. Many I know are having children and I often hear "when are you going to get pregnant?" or "dont you want to finally start a family?" and I have to try my best not to burst into tears.

So I cry and cry daily. Cry for everything I once had, cry for everything I'm terrified of never having.

I'm a Christian, so I firmly believe that the Lord will never give you more than you can handle. I just wonder why I have to always be strong, when the weak live such easy and happy lives.


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Re: I Cry and Cry

Post  Sarah001 on Mon Oct 17, 2011 9:00 pm

Hi and welcome. Do you have hormonal issues? I'm just wondering as you're having such a bad reaction to stopping the pill, might be worth getting them tested to see what's happening with those, you shouldn't lose lots of hair because you've stopped the pill. You could also ask for different medication if it makes you tired all day, there are variations that don't (apparently, I'm on dopey makers too!). Get your pelvic floor checked too, that's another constructive step. I think you need to make a plan of action by writing down a few things you are going to ask your doctor about and things you are going to try such as physiotherapy then work your way through it. Some good reading is "When Sex hurts" or "Ending Female Pain" or "Heal Pelvic Pain". As harsh as it sounds you need to take charge and stop crying, it's fine to cry sometimes but if you're crying all the time you'll never get through all the various treatment options so start making plans for things to try, one of them might just be the cure for you. Good luck and keep us posted on your progress.

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Re: I Cry and Cry

Post  Aussie on Mon Oct 31, 2011 6:58 am

You don't realise how strong you are, until being strong is the only choice you have.

I have been there. I have had v and IC for one year. I thought I was never going to feel any improvment. What have you tried apart from meds? I tried meds for months then went down the natural route and it is the only thing that has given me relief! I was a newlywed when this started too. 6 weeks into our marriage it really kicked in but I had repeat yeast infections after our honeymoon from too much sex (had pain free sex prior to this).

Have you tried physio? If you like I can give you a list of my herbs. Meditation can only make you feel better, and if nothing else relax the mind and worrying thoughts. It downregulates the nervous system thus reducing pain naturally.

Thinking of you xox


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Re: I Cry and Cry

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