Vulvodynia Support
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» Hope to all my suffering ladies
biopsies EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
biopsies EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
biopsies EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
biopsies EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
biopsies EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
biopsies EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
biopsies EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
biopsies 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!
biopsies 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


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Post  naomi Tue Jul 27, 2010 7:20 pm

hello!

So I had external and internal biopsies done earlier with a smear test (couldnt not do any of it awake due to extreme discomfort) under anethestic. Has anyone else had these done? Im a bit worried as I expected the pain that I am in but not the amount of bleeding. It is the amount of a period (if I go for a lie down I can feel it coming out). It is def not a period as I have been on the depo injection since all my gynae stuff got bad.

Oh a good note I didnt wake up from it singing my heart out (like when I was last under anethetic as a kid) but I had awful lighthead/dizziness and passed out 3 times. V odd but I know I have low blood pressure at the best of times. Got me a ride in a wheelchair...so got my moneys worth out of Uk's NHS Very Happy and even some biscuits Smile
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Post  Sarah001 Tue Jul 27, 2010 7:42 pm

The only thing I've read about bleeding afterwards is to rest with your feet elevated to slow the blood flow down and give the wounds a chance to heal. The site I read this on recommended doing this for a couple of days so if you haven't got on top of it by tomorrow you'd be better off cancelling the tribunal, your health comes first after all. Did they give you any results?
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Post  Sarah001 Tue Jul 27, 2010 8:06 pm

Just thought I'd better claify, feet elevated means higher then your head so lay flat and stack pillows under your feet. No sitting up and resting your feet on pillows, that won't work!
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Post  naomi Tue Jul 27, 2010 9:20 pm

cheers chuck! yep doing that now. I was just a little shocked, they didnt tell me to expect so much bleeding and for it to carry on. The last time I had internal biopsies last Sept it was just a tinsy bit of discoloured discharge. eeeek!

My Auntie is on her way up on the train tomorrow for tribunal, hopefully it will all be calmer down there tomorrow night.

Friggin vaginas, how'd ave em?! Evil or Very Mad
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Post  Sarah001 Wed Jul 28, 2010 11:33 am

How are you feeling today Naomi? Have you stopped the bleeding?
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Post  naomi Wed Jul 28, 2010 3:51 pm

still lots of discharge but its not blood-red, so yep seems to have calmed down. I have a feeling im going to be kneeling for the tribunal tomo though. I dont think I can sit at all for any length of time. doh.
naomi
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Post  Sarah001 Wed Jul 28, 2010 7:32 pm

Don't kneel it will make you feel self-conscious and inferior, stand up and lean on the back of a chair to support yourself. If you need to shift position do so, don't worry about keeping still etc just do whatever makes you the most comfortable. Good luck and let us know how you get on.xx
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Post  Sarah001 Fri Jul 30, 2010 12:04 pm

Naomi do you know how long your results will be? I see the dermatologist in 10 days time and I was rather hoping the results would be pretty prompt!
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Post  naomi Fri Jul 30, 2010 12:28 pm

I asked one of the doctors before I went in and she was vague saying "one to two weeks". I got a letter yday in the post for my follow up appointment for 22nd Oct!!!! I DONT THINK SOOOOOOOO!!! cruddy National Health Service!

So we are currently trying to track down one of the consultants secretarys (which is no mean feat!) and going to try and get on his private patients list again, hopefully get in to see him next month

xx
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Post  Sarah001 Fri Jul 30, 2010 12:39 pm

That doesn't sound great, Shocked looks like I'll be waiting months for results and follow up appointments then because there's no way I can afford to go private.
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Post  naomi Fri Jul 30, 2010 1:34 pm

you might be lucky hun, I think it depends on the area u live in, how busy the clinic is etc etc. I dont think the John Radcliffe hospital where I am being seen is all that great to be honest.

Just patience I suppose, something after a few yrs as hard to have!!!

Sure it would be a different matter if this was an exclusive male problem! Evil or Very Mad
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Post  Sarah001 Fri Jul 30, 2010 7:08 pm

No doubt you're right, look at the effort that went into viagra and impotence isn't even painful!

I think it will be a long wait, I've had to wait 3 months for this dermatology appointment because the vulvar dermatologist only visits our county once a month! It will no doubt be another 3 months at least if I have to back to her again. It's easy to see how women spend years like this under the "care" of the snail slow NHS isn't it!!
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Post  Julie Fri Jul 30, 2010 8:47 pm

I've never even heard of a vulvar dermatologist! I was told by a gyno that I might have to see a dermatologist if they can't find a good solution, but no more than that. Might be something to look into... thanks & good luck =) =)

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Post  Sarah001 Sat Jul 31, 2010 11:55 am

Can I ask what the healing time is like for biopsies Naomi? I realised last night you mentioned you were still having to do plenty of laying down a few days after having them done and I haven't got anyone to help me to do things during the day. My partner has taken the day off to take me because I want to get doped up on Tramadol before I have to face needles in the vulva but he's only got that one day off so the following day I'm going to be back to being home alone and having to do all the normal stuff. I read some other women's accounts of it and alot of them are mentioning it takes a good week to be able to do stuff again, some even said 2 weeks! Shocked If that's the case I'm stuffed!

Also did you have stitches? I know some people do and some don't but there's a lack of stories from UK women so I'm not sure if it's the norm to have them or not here. Hope you don't mind me asking all these questions! I'm trying to prepare myself as best I can and I'm nervous already!
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Post  julia Sat Jul 31, 2010 3:43 pm

hi Sarah,

I had a biopsy 2 months ago; it was at about 2pm ish and I drove back home from it, but was in a lot of pain (the John Wayne stance helped a lot). I did have to take the next day of work for both the pain, but more for the back my hypersensitivity flared up from people poking around down there. I did, however manage to go back to work the next day even though I was still in pain, it wasn't unbearable.

I did get a stitch, which was dissolvable. Saying this though, it took almost a month for it to dissolve completely, and meant absolutely no sex as it was far too painful. To touch the stitch was painful too, but unless I caught it, I wasn't in too much pain. The stitch was done after they cut the piece of skin off, but to be fair the injection was the worst part of it.

The thing to bear in mind with this though, is you might be one step closer to finding out another way of dealing with this problem!

Sadly though, I STILL haven't got my results back even though the consultant said (very cryptically) about 3-4 weeks to receive them. So I'm calling up on Monday... do I have lichen scheloris or vulvodynia? Or something else? Who knows?!

Good luck with yours, it's not pleasant but it's over pretty quick and I'm sure you'll be able to do things, just make sure you rest and don't do anything too active.
xxx

julia

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Post  Sarah001 Sat Jul 31, 2010 6:44 pm

Thanks for that Julie, the sex thing isn't going to be an issue because I'm wayyyy too sore for that anyway!! I have no doubt it will set off my joint problems just getting into position for the biopsy so I'm expecting alot of problems in that respect too. The injection is what I'm really dreading and the reason I'm not driving myself, Tramadol makes me totally woozy so I wouldn't be safe!! I know it needs doing and I am definitely going to get it done. My GP thinks I have Lichen Planus but the super potent steroid ointment she gave me just took a layer of skin off, now that really hurt for a couple of weeks so she's not totally sure now if I do or don't have LP. Thanks for sharing your experience with me, it's really useful for me to hear real life experiences before I have to go for these things.
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Post  naomi Sun Aug 01, 2010 5:57 pm

hi chick, sorry I didn''t reply yday, been so low I didn't even venture out of the bedroom. Thats one of the hardest things Im finding with this condition...how low and down I get. it sucks big time!

Well this morning I finally looked down there with a mirror...only one visable biopsy point externally but right on the vaginal opening...no wonder it hurts so frigging much it feels like its splitting!...hence why I cant put pressure on it by sitting upright.

I didnt have any stitches but wish I had to be honest as i thought it was healing but earlier (sorry the next bit is waaaaaay too much info!) I was having a number 2, but as my appetite is low at the mo I was straining and unforch my biopsy bit bleed so much dammmmit Sad So yes, my advice...keep your bowels moving healthily! oh yes and ask where they are going to take biopsy from, if needs be maybe ask for stitches

love Nai xxx
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Post  Sarah001 Sun Aug 01, 2010 6:01 pm

Thanks Naomi, can I suggest you send someone out to Holland and Barrett to buy you some Magnesium Oxide tablets? Take 2-3 of those a day and you won't strain even if you've hardly eaten anything. They're fantastic for getting the bowels going and softening stools, after all my years of crappy painkillers that cause constipation they're a must, even lots of codeine can't hamper my bowels these days! Get some as soon as you can so you don't put any more pressure on your biopsies, they don't cost much either.
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Post  naomi Sun Aug 01, 2010 6:12 pm

ace ta 4 that!...I'll get down to the health food shop tomo.

Last year (to the bloody weekend actually!) I had the worst pile and oh my god it was agony!!! Very Happy and that was a side effect of the amitriptlyne (sorry awful spelling!) I was taking to try and help with the condition (didnt help unforch) The tablets the doc put me on and even Senokot made me go the other way!!! cant win!!
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Post  Sarah001 Sun Aug 01, 2010 6:26 pm

Oh that sounds awful! It's fantastic stuff, I couldn't find anything that could override the tablets the doctors were giving me for joint pain and I was constantly having problems (not good for the pelvic floor either!) and I stumbled across an IBS forum somehow where several members used it to control constipation type IBS so I gave it a go and it works. Some of them take 4 tablets a day (1000mg) and some only 2 (500mg) so I'd say start with 2 and see how that goes, it's easy to go a bit the other way with it but you'll know the day after you take it if you've taken enough, it works overnight. Definitely the Oxide version though, and definitely no calcium mixed in with it! Hope it helps you.
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Post  Julie Sun Aug 01, 2010 6:28 pm

Make sure you don't push too much either way! I think it took me longer to heal because I was kind of disregarding that for fear that I'd get a little too 'backed up'... especially if you have a lot of time to rest, just let things happen as they want to!

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