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» Anyone have pain with urination?
Yesterday at 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

» Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!
Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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: 4

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: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

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


Mine is really bad at the moment

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Mine is really bad at the moment

Post  Ceriane on Wed Nov 09, 2016 4:24 pm

I have had vulvodynia for years. I also have vitamin deficiencies which are really bad at the moment B12, D3 and anaemia. I avoid getting into relationships because of it, and have also started avoided even socialising if I know I will be in situations where I will be constantly quizzed over why I'm not in a relationship. It is getting me down so much and making me miserable. I really feel disabled by my condition. At the moment I have a lot of soreness and dryness of the vagina, it is so uncomfortable and I couldn't face even being intimate with anyone at the moment. I have zero sex drive. I also have what feels like a uti...a burning sensation in my bladder, and around my back passage the skin is so sore it is splitting open. I am in so much discomfort and pain, feel like I have a yeast infection I can't get rid of. It makes me feel really horrible...I don't think it is the nerve pain thing (although I think I have that as well) I think it is more infection, skin condition related and linked to my body being very run down by my vitamin deficiencies. I don't think this is something that can be solved by an operation, I worry that if I was with a guy, they would expect me to have the operation....but I don't think my problem is that simple (guys always think there is an easy solution). It's getting me down emotionally and I can't go on avoiding relationships forever (like I have done for years....and people's questions are getting more and more awkward). I just don't know what to do...I am so miserable. Can anyone relate or offer me any advice. Would be appreciated.

Ceriane

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Re: Mine is really bad at the moment

Post  Sebby (Admin) on Wed Nov 09, 2016 5:17 pm

Hi, I'm sorry to hear you are going through a bad patch.

I had my worst time with it back in 2009 for over 2 years. I had constant pain, rawness, soreness etc.

I have always had provoked and I think it was stress that caused the constant pain. Then suddenly it went! I still do have provoked but not pain 24/7. I wish I could know what helped I was on lyrica but have since come off it with no problems.

It can be such a bloody mystery this condition, feels more like art than science trying to find solutions.

What have you tried so far? physio? meds? diet? there is so much to try and it can feel so overwhelming but different things seem to help different ladies.

Don't rush yourself to feel able to date or feel you have to make excuses. I was single for the 2 years and just said I needed time on my own for me.

I started dating my now husband in the spring of 2011 and was so nervous when I told him about the V but he has been amazing and patient! You never know you may meet someone just as understanding.

including myself two other ladies I met of this forum met someone and got married all whilst struggling and still struggling with V.

There is always hope and healing

Keep us up to date

Sebby
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Re: Mine is really bad at the moment

Post  Ceriane on Thu Nov 10, 2016 10:01 pm

Thanks Sebby...That has really helped. You know...I think people underestimate how much stress can be a factor...I know when I'm stressed mine gets a LOT worse...feel a lot more positive now about learning to manage my condition, and that I can still have a great relationship. Wish I hadn't let it put me off for so long.

Ceriane

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Re: Mine is really bad at the moment

Post  Sebby (Admin) on Sun Nov 13, 2016 6:33 pm

Yes you can have a great relationship as many of us have.

Stress and anxiety definitely makes my condition worse. Its a vicious circle having V and an anxiety disorder as they both feed each other.

I try to practise mindfulness and breathing exercises as well as prioritising self care.

Don't give up searching for a treatment that works for you. Its normal to hit dead ends on many of the roads but at some point you do find something that helps.

Wishing you luck and healing

Sebby
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Re: Mine is really bad at the moment

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