Log in

I forgot my password

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

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


In need of some advice..

View previous topic View next topic Go down

In need of some advice..

Post  everclear on Sun Feb 26, 2012 6:29 am

Firstly, I'm just so glad I found this forum. I honestly thought I was suffering alone - I can finally get advice and support from others who have actually experienced this.

I'm definitely in need of some advice, so I guess I'd better start with my own story. I'm 21, trying to finish my first degree and do my Honours as well as holding down a demanding job at a design studio. I have to sit down a lot of the time (studying, sitting down for hours at the office, PLUS I have to travel 2 hours on the bus to get to work and 2 hours to get back each day) which has just been really difficult with the way I'm feeling.

Around this time last year, I managed to contract a particularly vicious UTI which a round of antibiotics seemed to deal with. But a week or so after I finished the antibiotics, the intense pain came back with a vengeance. So off to the doctor I went again. And I was given another round of antibiotics. It seemed to go away again for a while, but then it came back again. This went on for some time, during which I had three urine tests done on three separate occasions (only one came back positive, but the antibiotics I subsequently got prescribed did nothing!). I also had a pelvic ultrasound which revealed nothing.

And so on, so forth. All the doctors seemed to do was to prescribe a different kind of antibiotics, so eventually I just gave up and tried to live with it, which was difficult because I felt like I was completely alone. I couldn't feel the infection inside me anymore, but the feeling of pain/burning remained (and another major symptom/side effect suddenly appeared which I'll describe later on).

But one day I happened to pick up an issue of Cosmopolitan (Issue 463) which had an article in it about someone who botoxed their vagina. I thought the title was pretty silly until I actually read it - it was about this girl who suffered for five years until she got diagnosed with vulvodynia. I literally cried after I finished reading because a lot of it sounded like me. So I did some research on vulvodynia and here I am.

So to get to the advice part... I'm not entirely sure I even have vulvodynia, because only some of the symptoms seem to match up with mine. I have no exterior symptoms (ie my vulva doesn't seem red or sensitive, no tears or sores or anything). It's all internal. I experience this intense pain/burning all the way up inside me, but it's most painful just inside my opening. I can't wear pants or tight underwear or stockings. I can have sex, but I usually regret it afterwards (sometimes right afterwards, sometimes the next day) because it causes the pain to flare up. I'm scared of using the bathroom (!) because it sometimes causes a flare up too.

It's not only the pain, but I feel like I can't control my muscles as well as I used to. Sometimes I get really, painfully tense down there, which makes me hurt even more, and I can't relax it at all, I just have to put up with it. The most embarrassing thing of all is, I actually wet the bed the other night (while I was sleeping with my boyfriend!). I couldn't sleep because I was so tense, and then I started to relax and it just... happened. 21 and wetting the bed. It was extremely humiliating. I apologised about a million times...

The worst thing is, I think because the pain/burning/tension is so intense, the major symptom/side effect I'm having is that I'm really horny. All the time. I can't control it at all. It's like the burning sensation/tense muscles are constantly pressuring me to feel turned on. It really upsets me that it's not me doing it - it's something that's happened to me that's causing it. And it has just wrecked my life. Not only is it really difficult to focus on work or study because of the pain/tension, but I can't focus because I'm too horny.

It sounds ridiculous, but I'm starting to really hate myself for the way I feel. Even though I know it will hurt afterwards, I have sex with my boyfriend because I'm just so out of my mind with being turned on. And sure enough afterwards I get punished for it because I'm in so much pain. And I never feel satisfied anymore - even if I do have lots of sex, I never feel like it's enough because the tension never goes away. Sex even feels different than it used to, which I don't like either. I guess I should be thankful that I can have sex at all. But to have my body react against my will so I want it really badly, then punish me for trying to alleviate it, is just so depressing.

It does seem cyclical - the symptoms lessen so sometimes I feel okay, but just as I'm coming off my period, it flares back up. I really dread that time of the month now. But even on a "good day", I still don't feel normal. Thankfully I have a really understanding boyfriend of 6 and a half years who is totally okay when I turn down sex because I don't feel right (I compensate in other ways, which he is happy with). If it wasn't for him I think I'd go crazy.

I haven't read the "turned on" symptom/side effect anywhere in my research to do with vulvodynia, and the fact that I don't seem to have any external symptoms makes me worry that maybe I don't have vulvodynia at all?

I've just tried so many times to get diagnosed and I am 100% sure it's not a UTI anymore because I've taken so many antibiotics. I'm so sick of wasting my money and valuable time on doctor's appointments and medicines only to get nothing in return.

I've been considering going to see this doctor at my local practice who specialises in women's health, but I'm not sure if I should, whether it would get me anywhere? It's hard for me to get any time off due to my job and my study, so I don't want it to be a waste of time.

So I guess I'm asking for advice in the sense that... where do I go from here? Any suggestions on what I could do? Do I have vulvodynia or not?

Sorry for the long post. I just really needed to vent. It's so hard to tell people anything because it's such a sensitive/embarrassing topic. My boyfriend is very understanding but he can't sympathise fully... and I'm just not getting anywhere with the doctors. I just want to be able to focus on working and studying and enjoying being with my boyfriend without constantly feeling like this.

Thanks again. I'm so thankful this forum exists.

everclear

Posts : 2
Join date : 2012-02-26

View user profile

Back to top Go down

Re: In need of some advice..

Post  Sarah001 on Sun Feb 26, 2012 1:30 pm

Hi and welcome. Due to time reasons I rarely stray out of the physiotherapy and biofeedback area at the moment but I just happened to read your story and I think that's exactly where you need to be. A UTI is a classic way to set the pelvic floor off, not only does the irritated bladder and urethra irritate the muscles but also because you're forcing small bits of urine out over and over again that puts even more pressure on the PF (pelvic floor). Feeling horny is possibly the muscles squeezing a nerve or it may just be because your mind is always on that part of your body, it's not typical of V but I have seen it mentioned in other places online by women with V. Wetting the bed is another PF issue, when I first started down the road of pinpointing what was going on I had urinary urgency and frequency and sometimes it would hit me so quickly I literally couldn't make it to the bathroom in time and I'd leak a little or at other times alot. As your PF is all clenched up and spasmed it can't do its job correctly and one job is to perform continence so don't feel bad, it's not your fault and it doesn't mean it will happen again. Pee last thing before bed (no forcing out urine though) and don't drink much before you go to bed until you've made some headway with the PF. You'll be relieved to know that even though my PF is still very tight just reducing the tightness a bit has stopped the urinary urgency/frequency and I never leak now.

As you know you have a problem with the PF definitely start there, you need a Women's Health Physio to see what your resting tone is, which fibres aren't working properly (usually slow twitch ones) and teach you how to relax the pelvic floor followed by trigger point removal and strengthening. You also need pelvic alignment and your posture checking to see what's going on from a full body perspective. As for the Women's Health Doctor, you won't know unless you go so I'd say go but go armed with the knowledge you want and need to sort out your PF first. Keep us posted.
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

A few ideas

Post  LizLemonny on Sun Apr 15, 2012 7:33 am

If sex brings on the pain in the hours after.

Try getting lidocaine from GP (max percentage you can) to use after sex as you will numb out and relax and then the tenseness won't bring on the pain. Often they won't prescribe it right away and want to try other things first so try to be insistent.

Use lube and condoms to minimise friction.

I've posted sex tips on this forum (more for pain during intercourse) click here if interested.

For the guilt thing you describe can you just use masturbation when you think you aren't genuinely wanting sex and just want the feeling to go away - you can then mentally compartment it as no big deal...?

Hope, hugs etc. It is worth getting a (insisting on a ) referral from GP to a gynaecologist maybe book one for after your exams?

LizLemonny

Posts : 14
Join date : 2012-04-14

View user profile

Back to top Go down

some advice

Post  chanel825 on Wed Apr 25, 2012 7:59 am

I am not a dr but u seem to have the exact thing as me. I was diagnosed w. vulvodynia after seeing more than 20 docs and being treated for yeast and UTI I did not have. All those meds made my symotoms worse. I dont know you but before I could not even have sex because I had so much pain I was given Marcaine a nerve blocker injection inside the vagina every 2 weeks and that seemed to help me a lot. One thing that has never gone away is burning and discharge do you also experience this? Its so bothersome I wisj I could know how to take it away.

chanel825

Posts : 4
Join date : 2012-04-25

View user profile

Back to top Go down

Re: In need of some advice..

Post  mary jane on Tue Nov 19, 2013 11:49 pm

this girl had symptoms of PGAD and no one told her that !!
avatar
mary jane

Posts : 318
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

Re: In need of some advice..

Post  tinkerbelle2 on Wed Nov 20, 2013 9:55 am

What is PGAD maryjane? Just saw this post pop up, everclear do you still post on here because our symptoms sound so similar! If you do please get in touch x
avatar
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 25
Location : Brighton, England, UK.

View user profile

Back to top Go down

Re: In need of some advice..

Post  mary jane on Wed Nov 20, 2013 1:35 pm

PGAD= persistent genital arousal syndrome.
there was a recent article about it in dailymail:
http://www.dailymail.co.uk/health/article-2508456/Sexual-healing-Botox-solves-problem-womens-uncontrollable-arousal-disorder.html
avatar
mary jane

Posts : 318
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

Re: In need of some advice..

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum