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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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In need of some advice..

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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

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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.
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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?

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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.

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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 !!
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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
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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
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Re: In need of some advice..

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