Vulvodynia Support
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» Hope to all my suffering ladies
Another story - but you might be able to help? :( EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Another story - but you might be able to help? :( EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Another story - but you might be able to help? :( EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Another story - but you might be able to help? :( EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Another story - but you might be able to help? :( EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Another story - but you might be able to help? :( EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Another story - but you might be able to help? :( EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Another story - but you might be able to help? :( 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!
Another story - but you might be able to help? :( 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


Another story - but you might be able to help? :(

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Post  penfebruary Wed Dec 14, 2011 12:54 pm

I've had 'vulvodynia' for about 7 months now - the symptoms started after a very bad UTI infection in February which took 2 bouts of antibiotics to get rid of. I then got another one about a month later which I tackled the same way. A few weeks later I got what felt like another one so took pills for this but these didn't help and it turned out I had a clean bill of health, infection wise.
Since then my symptoms have lessened so that they do not feel so much like a bad UTI and some days I feel totally fine.
I actually spent nearly 2 months in October and November feeling absolutely fine and my symptoms only returned last week which was very depressing and confusing!
My symptoms are;
soreness/burning in the entrance and just inside the vagina
sometimes this feeling spreads upwards towards the clitoris (never really reaches the clitoris though)
i also often have pain on urination, or urination will trigger the discomfort.
Very occasionally I will feel the need to urinate when I don't need to - more frequently I will have just small bits of urination over, say, an hour, (this is rare) but occasionally it takes about 2 or 3 goes to finish one complete urination.

Feelings seem to get worse around period time - my symptoms actually restarted the day before I got my period last week, although they are still ongoing even though my period is over. However there doesn't seem to be anything specific that triggers the discomfort - it just turns up when it wants. It used to not really affect me after about 10pm so my sleeping was ok but recently I have had discomfort after this time which is really bothering me Sad

I should also mention that I think at most half a year before this started my periods which used to be mainly red blood became brown or black with very little fresh blood in there. I asked my doctor if this could be causing it and she said it was normal - but I wondered if anyone knew otherwise?

Finally, I don't know if it's relevant but I've heard it might be, I am very prone to anxiety and panic attacks.

Paracetamol etc often helps to lower the discomfort if it is not too bad. I find that standing around for long periods of time also exacerbates symptoms which sucks because I work in a shop at weekends!

I don't find sex painful - sometimes slightly uncomfortable, and I get dry quite quickly which I never used to. I am not entirely sure if there is a link but I think that frequent sex can exacerbate the symptoms as well which obviously I don't want as I have just started a new relationship Sad

I was only diagnosed very recently by a gyno who does not know much on the subject (neither does my doctor) - I am looking into contacting someone who might know more. My GP has just prescribed me hydrocortisone steroid cream - she said it is meant to act like an anti inflammatory. However, I tried it last night and woke up in the middle of the night and this morning in the worst burning pain ever - a long bath with bicarbonate of soda took away the feeling but I am scared to re-use the cream! I am re-visiting a different doctor this evening. I don't want to have nothing to try, but I am worried to try the cream again (I may have used too much - but I was very sparing) incase it causes more problems than it solves.


I know this is just another story but I'm really wondering if anyone could help me at all - I seem to be at the milder end of the scale as sex does not hurt per-say and I can seemingly go for longish periods of time without issue.

I have just tried biofem which is a sort of thrush treatment that also is meant to balance out vaginal pH levels - I finished the last one last night but it doesn't seem to have had any effect.

If anyone knows what could be causing this or what I could do to make it stop, please let me know!! I feel perhaps my symptoms are not so bad, or at least not all the time, and therefore there might be a solution? Even to have a definitive way to take away the discomfort as it begins would be great.

I think I've covered everything. Please do help if you can, and I'm sorry if I've stated anything already explained - I have read some forums but I find that a lot of them scare or depress me as I am only 19 years old and am terrified. A few months ago I broke up with my long term boyfriend who, apart from my mother, was the only person that I could really talk to about this problem (although I don't feel I can discuss sex with her) and so I am feeling very lonely and isolated and depressed and hopeless now - I have been scheduled for some counselling sessions by my doctor because my anxiety and depression have gotten so bad over it. That's why I joined this forum, as it is hard having to put on a brave face and pretend to be fine every day to friends. I know there are many other people out there feeling the same.

Thankyou for reading.
penfebruary
penfebruary

Posts : 39
Join date : 2011-12-14

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Post  Sarah001 Fri Dec 16, 2011 5:48 pm

Reading through your story just keeps making me think pelvic floor dysfunction, go to a Women's Health Physio who uses a biofeedback machine and get your pelvic floor tested because alot of the things you mention are associated. Let us know how you get on.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  penfebruary Sat Dec 17, 2011 9:45 am

Hi, could you tell me what makes you think that/a bit more about he subject? How would I get tested for that? I live in England so do you know what sort of department that would be in. I had an ultra sound about 4/5 months ago which said urine flow was ok but I dont honestly know what that tests for specifically and it was a while ago. Thankyou !
penfebruary
penfebruary

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Post  Sarah001 Sun Dec 18, 2011 8:04 pm

Ok, symptoms after a bad UTI can be spasm of the pelvic floor, it goes into spasm with all the forcing little bits of urine out and the pain in the urethra. The urge to urinate when you don't really need to will make the PF worse because of forcing bits of urine out. The PF can make you have urninary urgency and frequency because of the irritation to the bladder from tight muscles. Periods can make the PF worse, especially if you get period pains. Black or brown blood is just old blood and that again could be because a tight PF is holding it up and it's inside you for longer, this won't harm you by the way so no point in worrying about that. Anxiety and panic attacks can make us clench the PF muscles as the body goes into stress mode. Pain getting worse with standing could either be clenching the PF or the PF pulling you into bad posture. Do you see why I just immediately thought PFD now? If the steroid cream makes things worse stop using it straight away, it will cause more problems if you continue to make your pain worse. I think it was you who also posted about tight stomach muscles today and if you read the thread it could explain that, muscles spasm when there's a problem and a tight PF affecting your pelvic position could easily be the cause of this.

As I said before you need a women's health physio with access to a biofeedback machine. I'm also in the UK and you can either Google to see where the nearest private one is to you or ask your GP to refer you to one on the NHS, most hospitals have one. Also ask them to check your posture while you're there to see what you're doing with all your muscles.
Sarah001
Sarah001

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Post  penfebruary Fri Dec 23, 2011 6:39 pm

Hi, I went to the doctors the other day - my usual doctor was away (doesn't matter so much as she's fairly useless) so I saw a different doctor who seemed a bit more knowledgeable. However when I queried whether there might be a problem with my pelvic floor he seemed fairly adamant that this would be unlikely unless I was older or had been through childbirth, and that if there was a problem with this I would have greater urinary problems such as releasing urine with coughing/sneezing etc. I'm not very good at fighting a case at the doctors and he said I should try the hydrocortisone cream for longer because I only tried it for 4 days so I haven't really given it time to work. I know he sounds like an A hole from this but he was quite nice. My doctors is closed til Wednesday now - but should I go back on Wednesday and demand that I see a womans health physio to have my pelvic floor checked?
Sorry, I'm sure I sound like an utter doormat from this but until this year I'd never had to be a regular installment at the doctors before so I am still trying to feel my way through getting the best possible outcome.
penfebruary
penfebruary

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Post  Sarah001 Fri Dec 23, 2011 8:16 pm

Yes you should definitely go back because your Dr is confusing this with a lax pelvic floor and stress incontinence whereas women with V tend to have tight pelvic floors so the information about having children/being older/leaking when sneezing etc is totally irrelevant because it's a tight pelvic floor you want to know about. Demand to see someone who actually listens to what you are saying and don't be fobbed off by a Dr talking about the complete opposite problem. Makes me so angry when they get it completely wrong. Evil or Very Mad
Sarah001
Sarah001

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Post  Chinchilla Tue Jan 03, 2012 9:55 pm

And please don't use anymore of the hydrocortisone steriod cream. My doctor kept prescribing me this and I kept using it. It made things so much worse. If your vulva skins burns after urinating, keep a squirt bottle of water next to the toilet and gently rinse off after urinating. I find this to be soothing. Doctors honestly don't know a lot about vulvodynia, pelvic floor dysfunction, interstitial cystitis, etc. But most of them are not going to readily admit this. We need to educate them and continue fighting for our own health. Please remember that you are not alone and feel free to share on this forum!
Chinchilla
Chinchilla

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