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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 6

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


Just needed to share

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Just needed to share

Post  tweety on Sun Mar 14, 2010 10:24 am

Hi,

My name is Sue. I've been dealing with Vulvodynia for 8yrs now so am grateful to have found this forum. I'm a very private person and up until 3mths ago (when i told my close friends), the only people who knew where my dr, bf at the time and myself. Although my friends are supportive, I dont think they can fully understand what it's like to have this condition. I have seen two r/ships end and am at the point where I don't know what I want to do about this problem anymore.

In my initial consultation with a doctor, I was fortunate to have one who knew about the condition. She couldn't even use a cotton swab in me without making me jump out of the examination chair. A gynaeocologist also confirmed the diagnosis.

During the first r/ship, I was on an anti-depressant medication to help with the vulvodynia, used lidocaine gel and also went to a physiotherapist. I found the physio treatment quite beneficial as I was never aware of my pelvic muscles. This is when I started to learn about my muscles and controlling them a bit better. I did some dilator work as well. We got to a point where we decided to "try" having sex. I would use the lidocaine gel prior to sex. It was never pleasurable. I called it a bearable discomfort. Somewhere along the way, I detached myself emotionally from sex in order to force myself to continue trying... hoping that over time it would feel better. My r/ship ended and I stopped all treatment. I took a break.

In my 2nd r/ship, I started treatment again about 6mths ago. I looked up a specialist and decided to follow through with his plan of treatment. I did biofeedback work and dilator exercises. i found both were very good in teaching me to become more aware of my muscles, control my muscles more in order to relax them. It also helped strengthen my muscles. As I hadn't done any treatment for over 2 years, I started off with the smallest sized probe attached to the biofeedback device. Over the months, I did dilator work and reached a size 4. I struggled with the size 4. I felt like I was progressing. I never had sex with my BF throughout the r/ship and then my r/ship ended a week ago. The stress of the condition got to him too much and I understand how difficult it was for him to go through it.

So at the end of this... I'm mentally and emotionally scarred. I have never experienced the so-called joy of sex. I resent sex. I blame it for the breakup of my most recent r/ship. I wish the activity never existed. I had days where I hated my body because I just wished it was normal so I wouldn't have this problem. I stopped thinking about marriage and having kids years ago cos I could no longer imagine even a guy staying long enough to get to that point. This idea upsets me very much. I don't know what to do anymore. A large part of me doesn't even want sex anymore - cos I can only link it to negative experiences and emotions. Even if I'm aroused, as soon as I think of sex, I turn dry. I don't know how to change my mindset. On the one hand, I know I need to get over this condition, on the other, my heart & mind just don't even want sex. Some days I feel like I'm just sick of trying. I'm sick of it. Just thinking about this condition makes me cry.

Anyways, thanx for listening. Sorry it was so long but it is 8 yrs of emotions.

Sue flower

tweety

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hi sue

Post  Sebby (Admin) on Mon Mar 22, 2010 8:11 pm

Thank you so much for sharing. I'm so sorry to hear of your recent break up. I am not in a relationship, I have taken a break for a year now but it gets lonely. I don't even think about sex anymore but I'm so hoping to have a child one day but at 29 I'm feeling like I have left it to late. I always had some sensitivity and difficulty with sex but it got a lot worse 18 months ago and then when I turned 28 I realised I did want kids but I had this problem.
I keep joking that I need a man with a small penis and won't last long! Mite be only way I get pregnant lol
Try not to lose heart, I read a story about a couple who despite her vulvodynia got married and they had never had intercourse she was hoping they could try on the wedding nite. I also read of a couple in Dr Glazers book who resorted to a turkey baster to get her pregnant and they had twins!
Keep in touch and let us know how your treatment progresses.

Sebby x
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Re: Just needed to share

Post  tweety on Tue Mar 23, 2010 3:36 am

Hi Sebby,

I know how u feel... It does feel lonely - like its just you fighting this battle alone and no-one else who can really support you. You know, after this most recent break up i was gooing to throw in the towel and just give up. But after some thought I realised that this is actually something I needed to do for myself.

It's hard to get my mind around it... cos I hate the idea of sex so much. I'm 28 and I stopped thinking bout a future with a guy a while ago. I see my friends getting married - which can be depressing.

As for you and having kids... its not too late. I've head the stats how doctors say its much harder after 35 and all. But the way I see it.. it'll be up to fate. Whether you meet the right guys etc. In the meantime, you might as well just keep plodding along and trying different treatments... and in someway its somewhat easier going through treatment without having that stress of knowing your partner is hoping it'll get better.

I'm hoping I wont have to go through any type of surgical procedure so am really doing my best to stick to my treatments and physio etc. Are you still on a break? Sometimes it is a good idea. Just to re-collect yourself before you start again. Are you planning to start treatment?

tweety

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Re: Just needed to share

Post  Sebby (Admin) on Tue Mar 23, 2010 7:40 pm

Yeah I get so envious of those with partners and kids, I really hope I can meet someone understanding that I can start a family with.
I am seeing a gyneacologist, it has taken ages to get referrals and follow up appointments. Have seen some right horrible doctors along the way and luckily the gynea I am seeing now at least is sympathetic. There is not much avaliable on the NHS that I know of and most doctors have not even heard of Vulvodynia in uk. He put me on cerezette mini pill to stop my periods as my flare ups seemed to be conected to my periods. It did not work it just made me really dry which made things worse. I am now on combined pill to see if the oestrogen will make a difference. If this does not work he will refer me to the hospitals Vulval clinic. Dont know why I wasnt referred there in the first place but I will give this pill a ago.
I cant take amitriptyline as I am already on meds that I cant mix with it. I would like to try bio feedback but will have to find out if I can get it on NHS? I will have to kick up a fuss I reckon. I dont think I would be able to afford private treatment.
I am not activily looking for a boyfriend but If I did meet someone who I liked then I would take a chance. The only problem is at what point do you introduce the topic of Vulvodynia? Over a romantic meal one day or before he gets too frisky? lol Smile
I think it was good for me to take a break and not have the pressure of a boyfriend who kept hoping he could have sex. A break will probably be a good idea for you too.
Lets hope we both meet millionare, low sex drive men who love cuddles! I could even set up a website for that! lol

Take care and keep me posted on how your treatment etc is going.

Sebby
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Re: Just needed to share

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