Vulvodynia Support
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» Hope to all my suffering ladies
In need of some advice.. EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
In need of some advice.. EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
In need of some advice.. EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
In need of some advice.. EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
In need of some advice.. EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
In need of some advice.. EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
In need of some advice.. EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
In need of some advice.. EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
In need of some advice.. EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


In need of some advice..

+2
Sarah001
everclear
6 posters

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In need of some advice.. Empty In need of some advice..

Post  everclear 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

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Post  Sarah001 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.
Sarah001
Sarah001

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In need of some advice.. Empty A few ideas

Post  LizLemonny 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

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Post  chanel825 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

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

this girl had symptoms of PGAD and no one told her that !!
mary jane
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Post  tinkerbelle2 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
tinkerbelle2
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Post  mary jane 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
mary jane
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