Dermatology

Well girls, dermatology tomorrow! I've already got a bad case of nerves so I'll be a trembling wreck by the time I get in the car to go tomorrow!! I looked up the consultant I'm seeing and I'm pleased to say she not only specialises in vulvar skin conditions but works at a college teaching other health professionals about them too so she'd better not be absent for any reason tomorrow and palm me off with someone else!!

ah chick! good luck! biopsies?

dont forget to write all the q's down, then if you get upset you can shove it in her face to read!!

Shame we all live so far apart, I could of kept u company

thinking of u xxxx

oh dont forget to ask who u are seeing, my mum only realised the person who did my biopsies the other day wasnt who we thought it was!!! been calling him the wrong name for months...opppps! they should wear badges!

Awww good luck Sarah...I do hope she is helpful and can do sumfing for you...she sounds like she knows her stuff

Will be finking of you and sending up prayers..

p.s. Naomi hehehe I couldnt pronounce the name of my old gynea no matter how much I tried..he's name was Mr Opemuyi..now its not really that hard when I look at it now lol duh

xxxx

Good luck tomorrow sarah. In january this year my gyn sent me for a routine scan, where they found a polys, in march i had it removed and also had biopsy at the same time, got the all clear thank god. Tell you what girls i've opened my legs to dr's and gyn more times in 3 years then i have in 37 years of marriage,ha ha !!!!!!!. MY gyne said if i have intercorse it will make me feel better and that it would make me feel that everything is ok,down there ,what a load of shit they tell us, it made me feel i was the only woman with vulvodynia that could't have sex, cant't wait to see her next month and tell her i'm not alone. Be thinking of you sarah.
maggie x

I'm sure you'll be fine Sarah. Nothing to worry about. Will be thinking of you here

xoxox

Sue

Well I'm back and what a complete waste of time it was too! I worried myself stupid last night, slept badly, dosed myself up on Tramadol until I felt dizzy and sick only to find she didn't think a biopsy was necessary. According to her vulvars often look red and raw and it's "within normal parameters" for them to appear that way?! I mean what the..? I'm no doctor but I know that isn't right and she's the first person I've seen about this who claims it is. If this is the woman teaching all the other health professionals about vulvodynia then it's little wonder we aren't getting any help!

She was pleased I'd already been given Amitriptyline for my joints but wants me to increase my dose by 5 times before I see her again in 2 months time. That's alot and I'm sure I'll have problems with side effects way before I get to that dosage. She gave me a letter for my GP to recommend the dreaded lidocaine ointment and said to use that every day which I wanted to avoid. The diagnosis was "vulvodynia" which I don't really consider a diagnosis because it doesn't mean anything, it's just a description of symptoms so that annoyed me too.

She knew very little about biofeedback and just said to keep going with that and that was it. I feel in much safer hands with the physio I can tell you.

On the plus side she said if you throw everything at the problem as early as possible getting on top of it is feasible, it's women who've had it for years and years and haven't been treated early on who don't do well with treatments. So anyone delaying seeing a women's health physio because they think they can't afford it, DON'T DELAY!! It's only a once a month appointment so not alot of expense. Anything you come across to try give it a go so you don't become someone who is beyond treatment, if you're using several methods and something works who cares what it is? You can then cut them out one by one to see which it is or it may well be a combined effort so girls don't just try one thing at a time, throw everything you have at this awful problem.

I go back in 2 months to see how I'm doing with the high dose Ami and lidocaine ointment and of course my own efforts with the physio and we go from there with what happens next. She said it often takes 9 months to a year to get on top of it but she usually manages to get women back to a normal kind of sex life etc so I suppose now I'm under her she will have to do whatever she can to help me. I'm very disappointed though, as a vulvar specialist she didn't know anything more than the GU consultant had already told me which surprised me. I'm so pleased I've already got a WH physio on the case or I'd have come home utterly depressed. As it is I'm very sore even through my Tramadol haze because of all the hours of sitting and her poking about down there.

My partner was good though and drove me in, I explained how long it might take to improve and he didn't look shocked or anything and we went for a brief stroll around the city together which is something we don't often manage, my joint problems restrict me so much I only travel that far if I really have to so we had a nice day together anyway.

I'm going to carry on with the physio, try and up my Ami as much as I can stand and I may use the lidocaine ointment briefly to see what happens. What a disappointing appointment though.

ohhhhhhh what?!?!! It's so fucking appalling the way this condition is just banded like this... "ohhhhh we are sorry we havent got the foggiest...therefore we will name it vulvodynia. Try these smarties/pills and come back in another 3/4 months when you will still no doubt be in the same friggin predicament"

Why cant they try and think outside the box and do some research. Its just plain discusting.

RANT RANT RANT RAAAAAANNNNNNNNNNNT!!!

I managed to get a private appointment for this Wednesday, but according to my GP the biopsies only showed mild inflammation....did they take biopsies from my friggin nose?!!! then why am I in so much discomfort. Anyway, other results hadnt come back yet so watch this space I suppose.

We'll get there (well Im praying, im not religious but Im praying!). I still hold out hope that Dr Crandalls theory might help (yeast). I decided im going to get on the sugar/yeast free diet...could do with loosing the comfort eating lbs Ive piled on anyway...treat the body as a temple as it were!

arhh Sarah...I can't believe she lectures on Vulvodynia! I would expect so much more from a specialist I mean she doesnt even no about bio-feedback!?

I think we should all go to medical school, yes I will have to win sumfing on the lottery first tho.. but then I will become a Vulva specialist..wow imagine that being your job title! lol be fun to introduce yourself at parties!

I will deff be looking into local Women physio's tho..Maybe the highter dose of Ami will help??

Naiomi - let me know how the yeast/sugar free thing goes..have you taken alphadophilus? (yes i had to google that spelling!) got all the anti yeast good bacterias in it...better than eating bloody yougurt everyday. They taste like sweeties too!!

Take care girls xxxx

I felt so crap yesterday after all that Tramadol I forget to tell you all some of her "gems". She said if I'm looking at the area at all with a mirror, don't. Now that only makes sense if I am indeed very red down there and she's thinking I'm seeing the red skin and imagining it's worse. I could have slapped her for that one, it's clearly the pain that sends us women looking with a mirror and not because we just feel like it!

According to her all the negativity online isn't true and is posted by "crazy people" (yes, her words) and most people recover but never post to say so. Now she's probably right that people who recover don't bother to post again with a few exceptions but it's a bit harsh to call all us ladies in pain crazy.

She isn't really offering anything except painkillers which doesn't solve my skin problem. I'm not imagining the red skin, it's been confirmed by 2 nurses, 1 GP, 1 GU Consultant (who surely wouldn't have referred me to dermatology if it wasn't there?!) and a Women's Health Physio. I'm going to see my GP again and see if she will help me and if not I'll go back to the GU clinic and ask to be sent to the vulvar clinic instead. I don't think I have a skin condition, I do think it's just inflammation which is what I suspect yours is too Naomi but being dismissed like that made me really angry. I will up my Ami but only because I need to for my joints anyway and I will try the lidocaine but I'm kind of expecting an allergic reaction from that.

The Women's Health Physio said the inflamd skin is the skin reacting to a misalignment in the pelvis or a very tight pelvic floor and as you get on top of the pelvic floor issues it should calm down but as it's not a skin problem as such it won't respond to steroid creams etc. I'm going to keep going with the biofeedback and see how I get on. I'm horrified though that this woman is teaching others to be as useless as her.

Oh mannnnnn!! sounds like u truely had a memorable appointment!! she sounds like a proper dick! We ought to start a 'black list' of laughable 'professionals'

Seriously though, what planet is that woman on?!!!...I wonder how much NHS salary she's on to come up with her prize winning theories?! I'm not one for wishing stuff on people, especially a gynae condition...but maybe karma will visit her one day and god forbid she'll be in a predicament like ours.

Yep completely agree, I think it isnt a skin condition I have but inflammation, just need to find the trigger.

I just read your reply out to my Mum and she said that doctor is talking out of her bum and hasn't got a clue! She also confirmed to me that I am a "crazy person" (hehehe! I cant get over that!!). phew I was a tad worried there!!

I'll tell you all for a fact girls...that if I was suddenly cured and healthly I will not vanish off the face of the earth...I will be singing it from the roof tops (the cure/treatment that is), so no worries there!

Me too Naomi, if I find a cure for mine I'll definitely share it! It might save other women from having to go see crap "specialists".

Don't know about you Naomi but I'd much rather have the version that doesn't have anything to see, that would really narrow it down to what's going on because it removes the chance of a skin condition or an allergy. I'm sure my skin isn't an allergic reaction as I don't have itching and I always get itching when my skin plays up. I can't pinpoint a skin condition that it looks like either but the sore skin is the big issue for me, that's the area that hurts and if my clothes rub on it or even skin on skin it gets redder and looks like it might bleed. I'd like to try oestrogen cream but I'm going round in circles asking everyone about that and the only person who agrees that would be a good plan is the physio. She went as far to say it could well be hormonal as my cycle has changed and my Mum was menopausal by the time she was 45 (I'm 37 already) so I may bug my GP for that next time I go in. But for now pelvic floor work and ice and heat will have to do. Bloody so called "specialists" just get me down.

yep completely agree...Or no gynae problems would be good ("wouldnt we all" I hear you ladies say!)

how do you do the pelvic floor thing? Im so confused with it all! is that the thing you scored high on? I couldnt get anything up there its so sore. I dont really know what else I can do really...Ive got really good at "chasing my own tail" if that counts as being productive?!!

I am starting back on the sugar/yeast free diet, taking a multi vitamin now every day (the constant stress has made my skin so dry and lifeless) and I am going to treat my body like a temple

oh yes and Sebby I will get back on to the acidoilioilphillssss (Im not even going to attempt that spelling!!). I have a bottle of them at my houseshare, the ones that are hideous amounts of money but contain billion and trillions of happy bacteria etc etc

SO I have to go back and discuss results tomo in Oxford (this has made me v well travelled grrrr) and the gynae will say "yes we saw inflammation blah blah blah amitryp' blah blah blah....have you tried the low oxolate diet?" I am going with negative thoughts I know and I should keep an open mind...but after 2 years of being fed b'shit Ive become like this!!!

Will let you tomo what treatments they suggest....crushed diamonds mixed with rats brains.....dinosaur wee wee....

xxxxxxx

I take Acidophilus, have done for about 15 years but it isn't helping me. The pelvic floor training really requires you to see a therapist because it has to be very individual depending on what's going on with you and how many reps of exercise you need a day etc. I'm very sore but I just grit my teeth and the physio uses loads of lube so it's as easy as possible to get the sensor in (which isn't very big), plus you can insert it yourself so you can do it as slowly as you like. I figure it's worth half an hour of increased pain once a month to see what's going on in there. It's the only treatment I've seen women reporting good results with during my searches so it's kind of where I made a beeline for! My pelvic floor resting tone is very high which is exactly what you would expect to find if this nightmare has a pelvic floor element. It's complicated for me though because my joints are all hypermobile (ligaments are too lax to support them) so I'm not going to be able to get rid of all the spasm in there.

I've nothing against taking Amitriptyline but I'd be alot happier about it if my skin wasn't red raw. It's just that doctors call that a success and it's really just hiding the symptoms which to me isn't a success as such but there's nothing wrong with some pain relief while we try other stuff.

Good luck tomorrow Naomi and no, chasing your own tail doesn't count as productive!!

so there was no treatment plan of Dinosaur wee wee or crushed rat brains...no treatment plan at all infact!!

Biopsy results came back as 'Acute Inflammation'...no sh*t sherlock! and his first question was "have u ever used broad sectrum antibiotics?" (to see if that would help my condition) I said that that was how I got into this nightmare...cystitis caused by sex...antibiotics...thrush...catch 22. So that was a no go.

Suggested a list of medications...all of which I have tried and its not helped.

So now we are still waiting for a dermatology test they are expecting to get back soon.

He said I could try topical steroids again (betnovate cream) and see if that helps - Im so sore and itchy since the weekend externally. Im considering it to be honest as its driving me slightly mental at the mo!!! its hardly attractive itching ur lady bits in public...that'll never help me meet my prince charming

BLIND LEADING THE BLIND.

At least on a happy note he is the lovelist gynae Ive met so far, lovely irish accent and bed side manner... if I were 25 years older

He also said that if he cant help me he will help me find other specialists and not ditch me, unlike the others I had to research and find myself on the net.

He was surprised about how many well known specialists ive seen about this. I told him that if he spoke to ladies on the net with similar conditions he would see that it was the 'norm'.

SO no answers...Im not overly upset today as I knew this was coming, so Im not distraught and crying. Just feeling numb from being fed up 24/7. Just numb all over really...apart from in my lady area!

Think its going to be back to square one...Dr Crandall theory of yeast etc etc and give that a good bash if these guys in Oxford cant help.

Has anyone got any good news???! PLEASSSSSSSE!!!

Hi Sarah,

Sounds like your GP is prescribing the same as mine really. I'm currently on something similar to amitryptiline and I'm suppose to use lignocaine regularly too... which I haven't been.

See how you go I guess? I can't believe she couldn't offer you anything for your skin.

Anywayz, just sending my hugs out to all you gals.

Cheers,

Sue

Thanks Sue, I think with me they hear about the Hypermobility Syndrome and Fibromyalgia and every problem I have gets lumped under those conditions. I plan to try and up my Ami but I doubt I'll be able to go as high and as fast as she wants me to without being a complete zombie so I'm going to do it slowly. If these things don't help much I'm going to get the Women's Health Physio to write to my doctor and request Oestrogen cream as she thinks that may help me, it's the only way I can think of to try and get it, the doctors are resisting me at every turn about that.

I think the pain relief angle is probably for the best, the physio who does biofeedback with me explained pain in the area will make it very hard for the muscles to relax so it's a necessary evil I think.

How's your physio going? Are you continuing to improve?

Hi Sarah,

I'm starting to be good and really put in the effort to do my physio homework. I just had a session with my physio on Wednesday. My next appointment is in a month's time. So the expectation is that I'll get my muscles back to that point where most of my external muscles were soft again.

In addition, I need to really start getting my brain used to the feeling of touch. My muscles automatically contract when she says she's going to come near me.

I must say, what has really helped me push on with this is having my friends come with me to physio. They just drive me there and wait while I have my treatment. But it does help me feel like I have support around me. They were really sweet and actually got me a calendar too. So I could keep track of how often I did my physio homework. This way, I can remind myself I need to do more physio for the week or whether I've done my minimum that I've set for myself. It's just hard trying to lead a normal life and fitting all the appointments scheduling time. But it definitely has put me in a more positive frame of mind.

My doctor increased my dosage last month just as a temporary increase whilst I was still quite emotional. I really do feel the side effects of this increase though. Dry mouth and the groggy feeling in the mornings. What dosage are you on?

I've never heard about the Oestrogen cream. Let us know how you go if you do end up using it

Cheers,

Sue

I'm only on about 20mg a day and I'm way too drowsy and dizzy to drive, my mouth is so dry I'm drinking bucket loads of water and still it's dry and I either sleep like the dead or don't sleep at all! I hate medication!

I'm in the very early stages of biofeedback (as you know) so at the moment I only have to do very short sessions of pelvic floor work and I've been trying to release some of my external muscles for years (Hypermobility means they clamp back up again ). Have you had your breathing assessed? I know I'm what pilates term a "breath holder" which means I restrict my breathing with my upper abs and use my shoulders to breathe, this is obviously not a good way to breathe and encourages tension in the body plus it pushes the pelvic floor down too. I'm trying to correct that with lots of lateral breathing exercises at home and plenty of massage around the thoracic spine. I find I either grip around the ribcage or grip with the pelvic floor so if I correct one temporarily I tend to go to the other method of faulty stabilisation. Very frustrating!

I've seen other women mention oestrogen cream as an option, because it thickens the skin of the vulva it makes it less sensitive so it's something I really want to try but I'm getting told no at every turn. I'm going to keep badgering them about it though! A nurse at the GU clinic told me to use lube and massage the area lightly so it gets the skin used to touch, do you do that?

I've only been doing my pelvic floor work for a week and a half so I'm not expecting any results for a few months yet. Is your resting tone stable? I know the resting tone being low is good but I also seem to think the line should stay fairly constant during rest to indicate a stable pelvic floor. Mine's up and down in spikes that go down as low as 16 (still shocking!) to a usual 20 (horrendous) and right up to 25 (appalling) at rest so mine isn't stable at all.

It's really helpful to have someone to discuss this with!

Hi Sarah,

So funny you mentioned the whole drinking heaps of water. I just complained to my physio about that too. I felt like I was constantly peeing and didn't know whether it was my pelvic muscles were too loose now or what not... HAHAHAHA. Apparently, someone of my size should only drink a maximum of 1.5L a day (I'm 50kg btw). So that's why she prescribed me the dry mouth gel. She had quite a few products which come in different forms like a mouth wash and stuff. You may want to give them a go. I'm currently using oral balance dry mouth moisturising gel from Biotene. I'll let you know what I think of it after a week.

When do you take your meds? I take mine at night a couple of hours before I go to sleep so hopefully most of the drowsy side effects occur when I'm sleeping. But yeh, I still feel groggy in the mornings. I don't think mine is as bad as yours though. My groggy feeling lasts about 30 mins in the morning whilst I'm trying to get up and ready for work.

I've never had my breathing assessed. Who would be the best person to test it? My GP or physio?

My homework from physio is touch and getting my skin use to it. I think I really need to work on that because my skin lately feels more sensitive than what it was - but that's mainly because of my slight setback =P

From what I recall my resting tone as quite stable. Getting myself to release after a contraction was difficult - it was a bit slow.

Keep up the good work with the biofeedback. You'll find the activity of just working your muscles (release & contract) is a good way warm up before you get into say the massage and touch - like how you would warm up before a gym session.

Yes, it's quite funny how we're kinda doing the same things now... hehehe... good to exchange notes =)

Cheers,

Sue

A physio should look at your breathing, in order to get proper functioning of the pelvic floor it's essential to be breathing into the entire ribcage, most people (me included) breathe only into the front and use the shoulders to get enough of a breath in so there's exercises for learning to breathe into the sides and back of the ribcage. I find them quite painful actually because that area of my ribs is so used to not being used it's rigid.

I'm peeing all the time too and it doesn't help me much because my pelvic floor issues have given me urinary urgency so when I have to go I really have to go!!

I take my Ami at night before I go to sleep but it just keeps me drowsy all day long. I'm really sensitive to medication, the GP gave me Tramadol for my joints previously and while it's a great painkiller it made me stop breathing everytime I fell asleep which was really scary. I hope the side effects fom the Ami will reduce but if not I'm going to have to change I think.

I'm terrible at relaxing the pelvic floor after a contraction, I feel like I've done it but I've actually just let it go back to spasm level and not let it go completely which is why I advised the other girls to get their pelvic floors tested before starting a home kegel program. You just have no idea you're doing it do you? I was convinced I was relaxing the pelvic floor but I just wasn't which obviously will just make it worse.

I'm really glad someone else is doing the biofeedback, I need someone to compare notes with!

Well I'm going back to the vulvar dermatologist later today, I have managed to get my Ami to 50mg and push through the drowsiness but I don't think I'll be able to manage any higher. Let's hope she's less dismissive of the problem this time although I doubt it.

I'm back, she wasn't quite so blase about it today as she expected the Ami to resolve all the pain. She admitted she could see red inflamed skin today too but she's still adamant it isn't a skin condition (I agree, I don't think it is either) however all she could offer was the addition of Gabapentin so she's writing to my doctor about it and starting me off on 900mg a day and I go back in 2 more months. If the Gabapentin works we then start dropping the Ami a bit so I'm not a complete zombie with the combination of the two. She actually admitted Ami is only very helpful for burning sensations, it has taken the burning away for me but not the soreness I feel all the time so it's basically because Ami isn't particularly good at relieving other pain sensations except burning. It went pretty much how I expected it to and I'm still feeling like it's a wasted trip every couple of months but I refuse to let her off the hook by not going back. I figure if I stop going she'll chalk me up as a success and it will make her think she's still an expert whereas if I keep going back and forcing her to help me maybe she'll start to realise she's a bit behind the times with her methods. Not a particularly successful day all round.

anyone ever have this i had hives last year had a reaction, ever since that i have not been the same i read an article saying that hives could bring this on i am going to a demetoligist to rule that out if it is possible thats what brot this on or if it is a skin condition, is this possible , please adivce would be grateful seeing him on wednesday

I'm not sure if this is any help but I have chronic hives and have had them for over 16 years, I take anti-histamines every day to control the itching but I'd had them for at least 15 years before the V set in so for me I doubt it's related. Histamine is involved with the whole inflammatory process so it could be related but if it's like an allergic reaction going on down there then anti-histamines should stop the symptoms. See I told you I wasn't likely to be of help!!