oh my god-i finally have a diagnosis-my story (LONG!)

Women's health
1

my main complaint has always been painful sex, well for the last 2 and a half years at least. my partner and i had been having a pretty normal sex life until bang, one day it just started hurting, really really bad.

so i took a god-awful flu around the same time which completely wiped me off my feet-fever, hallucinations, tonsilitis, you name it! so i was prescribed an awful lot of antibiotics and what not.

so this naturally lead to a bout of thrush which i wasn't really prone to in the first place. treated the thrush, treated my partner and still painful sex and on random days the most god awful itching.

went to my doctor countless times and was finally referred to the gynae clinic at the hospital. trainee doctor examined me and referred me to genito-urinary clinic (i.e. STD clinic!). no way was i going there.

so i paid to go private (£350 for a 30min consultation, banged it on the credit card) was told i had thrush again and was sent skipping with my canestan.

treated me, treated boyf, still painful sex. paid to go private (diff consultant a second time) was told i had an erosion and was booked in for a cauterisation (?)

months later, still no relief... given dilators this time.

3 months later... anaesthetic lubricant

2 months later... dermovate

and in 2 months i'm booked in for a skin biopsy.

as i'm sure many of you have experienced yourself, it is extremely frustrating being passed from pillar to post and health professionals not taking you seriously. so i've been researching on the internet for months and finally, tonight i've diagnosed myself. all the pieces of the puzzle fell into place.

i just know when i have my skin biopsy in september it is going to confirm LS.

on intercourse i experience an extreme burning sensation, highly inflammed-sex is nearly impossible so we haven't attempted sex for a year now, i have random days where i will itch like mad and claw myself red, i sometimes develop red blisters around my genitals, i bleed when i have bowel movements... etc etc

for so long i have thought that the pain and all of it was just in my head. i actually can't wait for the skin biopsy so this can be confirmed i can finally be confident that the problem is being dealt with effectively.

it is so comforting to know that there are others out there experiencing the same thing.

2

I'm sad to say that your story sounds so familiar to lots of others on this site and other LS forums. Also very similar to mine , although i voluntary went to the gum clinic as i thought my husband may have been having an affair as every time we had sex i suffered with pain, itching ,redness, got thrush etc etc etc . I have to say they were great at the clinic and said immediately it wasn't an std. I felt even worse then for ever having doubted my husband. I was diagnosed by the dermatologist eventually and although i thought i would be relieved to know what was finally wrong with me i was in a terrible state for the first couple of weeks . A positive mental attitude is key to this condition as it affects your mind just as much as your body. Wondering, why me, why now, was it something i did , when it was nothing we did it's just the roll of the dice. You do seem to have symptoms that sound like LS . I also suffer in my anal area with soreness when having a BM and skin tags in that area.Anyway sorry to be rambling on ,just wanted to let you know that my thoughts are with you and if you want to rant then this is the right place to come. Netty x

3

thanks netty x

yeah when the trainee doctor referred to me the STD clinic i was appalled. but then i started to question whether or not my partner had been unfaithful. poor fella, he's been so understanding through it all. i mean no sex for a year and because i've been so worried about it i have totally lost any sexual appetite.

it has affected our relationship, because i haven't been diagnosed yet he's been thinking i'm not attracted to him etc. but now he keeps me positive. reminding me to use my cream and dilators etc.

it makes you feel like less of a woman sometimes.

i've only seen gynae specialists to-date, but i presume that when i have the skin biopsy that a dermatologist will also look at it. my gynae consultant says that if the dermovate doesn't work then she'll do a skin biopsy but i want one anyway. i need a diagnosis to confirm this isn't just all in my head. i'm 24 by the way-although most of the info on LS on the net says that it usually only affects women over 50?

thanks for the encouragement netty x

4

Hi again, Just to let you know that i'm 45 . Think i've had LS for years though. I just sort of learned to live with it and it was only when it peaked and i couldn't walk for the swelling and pain that i decided to have it out with my doctor .Just got fed up of him doleing out the thrush treatments almost as soon as i walked through his door. I think it helps alot if you have an understanding and patient partner which you do by the sounds of it. My hubbys great but his way of dealing with it is to bury hius head in the sand and hope it'll all go away.How are you getting on with the Dermovate? Have you had much improvement ? Have you a date for your biopsy? Sorry, too many questions but keep posting as it's good to get things off your chest . Netty x

5

oh dear, i'm in agony tonight with the dreaded itch.

i saw my consultant 2 weeks ago n she started me on the dermovate, told me to start using a wash called 'lactacyd femina', use the biggest size dilator every night and my doctor told me to use anusol twice a day and a laxative for my bowels. i don't know whether i'm coming or going at the moment.

i only got hold of the wash yesterday and used it for the first time today in the shower. i was itching a little earlier but tonight it is awful. it's supposed to be extremely mild and i used it with a new sponge so no soap or anything. nearly clawed myself to death earlier.

haven't got my dermovate yet, cos the consultant only gave me a letter to give to my doctor and i'm waiting on my script. so i slathered on the only cream i have-canestan with hydrocortisone. mild relief.

my consultant didn't really explain what the dermovate was for? is it to stop the itching or relieve the pain when having sex. because i told her the pain from sex is inside and the cream is only to be used externally. also, i seem to be able to use the dilators and lubricant with no pain or burning but when i've tried in the past to have sex using the same lubricant it burns and pains me? we don't use condoms cos i'm on the contraceptive pill so it's definitely not an allergy to latex or anything.

btw...my consultant said to use the dermovate every night for the next 6 weeks or so. but my doctor said every other night. does it matter?

sorry netty, all i've done is ramble all about me, me, me! your condition must be worse than mine if you couldn't walk for swelling and pain. luckily, i usually only get the itching and pain at night but sitting down can be v. uncomfortable.

i paid to go private to see this professor in the early stages (first 6 months) and he was the one sent me skippin with canestan and fluconazole(?). it's too easy for them to just say...yeah, it's thrush, here you go.

lol at your hubby, don't get me wrong, my boyf doesn't want to talk at length about the problem, he buries his head in the sand too-reminds me to use the cream and keeps smiling but that's about it. but at least he understands now that i'm not just being a hypochondriac.

i don't have a date for my biopsy yet. a bit frightened really, i'm terribly squeamish. i fainted on the day of my cauterisation lol she said she's going to put me to sleep when she does it. how does it differ from just taking a swab?

sorry for these rambling posts, i'm just excited that somebody is actually listening to me for a change! lol

xx

6

oh netty, one more thing...

i'm thinkin that i should take out private medical insurance before i'm officially diagnosed with this incase i'm going to need a lot of treatment or my condition worsens. would you advise this?

i signed up with bupa at the start of this year and told them about the cauterisation etc... but they still covered me for it. so i'm assuming that they may still cover me. do you think this is necessary?

7

:lol: Dear Dear Miffy my heart goes out to you, but please try to stay positive.Read my letter posted Mar 22 2oo8.I use aqueous cream to wash down below and b 4 I have a bath or shower put some all over down there

and then I use a nappy liner to gently pat dry myself there.I wash my panties by hand and rinse them very well i also use a disposable rubber

glove when putting ANY creams on .You dont have to use a new glove every time.jst give it a good wash and wrap it in a clean flannel or something.I was prescribed dermovate{strong steroid} then i was put on betnovate {a milder steroid} and now iam on eumovate{very low steroid}

but along with this I was prescribed Diprobase which is brilliant it is a barrier cream and can be used as many times you need through the day and night .My itch stopped altogeather after i started using dermovate. Thank God...I still get very sore and swollen sometimes, but think i am learning to cope with it.I hope you partner stays very understanding and very supportive cos you need it. Please keep us informed how you are getting on. Goodluck,Very Kind Regards DX

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Hiya Miffy, Why is it the itching is worse late at night do you think? I am woken up by it some nights and once in that itch, scratch cycle it's a nightmare to recover from. I'm sure i scratch in my sleep. The Dermovate is for the pain, itching and inflammation relief , and from what i've read you only use a pea sized amount and gently massage it into area. I was told to count to ten as you rub it into each bit of your vulval area. With regard to your consultant and GP giving differing advice , when you get your script check what it says on the sticky label about how often to apply. I can't really advise you about Bupa other than to say if i could afford for myself and my family to join i would, but i know it's costly. The thing with this disease is that what works for one won't necessarily work for another and it's all about trial and error. If i applied my meds with a rubber glove (as was suggested) for instance it would make my LS ten times worse. There are other forums and sites out there with loads of info on LS which give us all hope and comfort.

Sorry but Patient Admin have removed a postal and an email address from this posting, as it is the policy of Patient UK not to publish these on this forum.

The meds and suggestions file will be of interest to you. Keep posting. Hope you have a better night tonight. Netty x

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Hiya Miffy, Tried to pass on another Ls site to you which would've been of great help , but haven't been allowed to. I read the terms and conditions on this site before doing so and they say you can pass on other web site address's providing they are for essential background reading which this was. Oh well, hey ho, I tried .Sorry . Ignore the last bit of my last post about meds and suggestions as this was on the other site. Netty x

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hello again netty, hi D,

i haven't bloody started this dermovate yet nor i have started using the dilator. i do this. they give me treatment and rather than get stuck in straight away i spend a few days or even a week or 2 thinkin about and putting it off.

the dilator she wants me to use is the biggest one and it really is too big and unnecessary if you ask me but she insists she wants me to be completely stretched.

the itching has eased a little over the last few days. continued using that wash but without the sponge this time and it seems grand. mind you the sponge was brand new and i rinsed it before i used it but sure.

can't really afford the private medical insurance but afraid that i'm going to need it with this condition. not sure what to do.

feeling very sorry for myself at the mo cos i had a head cold last week and my sinuses are blocked again which means i'm having these terrible tension-like headaches.

i don't smoke or drink, i should be the picture of health lol my partner jokes that if i was an animal they'd have put me down long ago :-)

i'll let you know how i get on with the dermovate, if & when i start it! well, not IF, i will do it but i'll put it off for another few days or so.

hope everyone is keeping well

never mind about the website link netty, i would have liked a bit more reading on LS but ach well.

11

Hi I have just been reading your story and my heart goes out to you .... it took me 9 mths to get correctly diagnosed with LS and as you say had to endure endless battles with my Doctor until eventually they referred me to a dermotologist ... I went private to speed up the appointment because I was getting desperate because like you I was not sleeping at night due to the discomfort and soreness/itching. The consultant took one look and said yes you have a classic case of LS .... halleujah.... Like so many others who have written in on this forum I use and only use Aqueos cream to wash myself (its cheaper over the counter than on perscription) and once washed and dried I also apply some more, every day without fail. I have had LS for 5 yrs now and use dermovate twice weekly, liberally as I like. I think I have this under control, yes it sometimes is a frustration but its a routine that you soon get used to and once you find yours you will be fine. One point my dermo consultant said that LS sufferers cannot cope with canteston creams etc and this often intensifies the situation so if you can I would stop using it ..... also the reason you get more itchy at night is due to you getting hot so never wear pj bottoms or undies at night. Try and apply some aqueous cream before you go to bed, not too much, just a little all over and see if this helps. I also hear Vitamin A is also good because LS is supposedly to do with you immune system and Vit A helps build/rebuild your immune system...... give these things a go and keep your chin up ..... good luck

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hi guys,

i haven't posted in over a month or so but feeling terribly down tonight again.

i've been using the dermovate cream every night for a month and using my wash. so i haven't attempted intercourse with my partner during this time. my next appointment is on thursday and i thought we would try intercouse tonight to see if the cream had worked.

i became terribly upset again (as i always do) - in a lot of pain and couldn't physically bear any penetration at all. i was well lubricated and tried to be as relaxed as possible. nearly two years since i first sought help and i'm in exactly the same position today.

i didn't really understand why i was prescribed the dermovate in the first place cos i told the consultant that the pain was internal and the cream is only to be used externally but i gave it a go anyway.

i'm sure i'll get my date for the biopsy on thursday.

how is everyone else doing?

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sorry previous was me again - Miffy :D

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Miffy, How are you today? Hope you're feeling a bit better. Not long now till you see the consultant. Will you come straight on line and let us know what he says please. Do you think it's soo painful because you've closed up down there, or purely due to the fact that you're so inflamed? Do you think the cream may be making things worse. That happened to me with the first steroid cream i was given . Get all your questions written down before you go in to see him coz it's easy to forget what you want to say when you get in there due to your nerves . Make notes if you need to so you don't forget anything. I did that last time because it was all a blur the time before and i couldn't remember a thing when i came out.

I'm doing reasonably well at the moment ,(i'm touching wood) as i say that. Not itching at all and getting less red down there week by week. Will i ever be a pink colour do you think ?It's years since i was. I'd almost forgotten the colour i should be down there as i've been bright red for so long now. Have been given a lesser strength steroid to use from now on unless i flare up again in which case i have to swap back straight away.Have managed sex with my hubby a few times and not torn or got an infection afterwards or itched . All in all ,apart from anal area playing up recently, it's all reasonably good with me. I'm sending you big hugs through the air waves and don't forget to get back to me on Thursday. Netty x

15

Well it must be the month for biopsies as I said in my experience having been treated for thrust for, it appears when I saw my GP recently. some 18 months and told that I also had a fissure (I didn't it was the LP. As you say the itch is unbelievable and thankfully not having false nails meant that when it got too bad at least I didn't do myself much harm, usual skin breakage, bleeding but relief.

Hope your biopsies go okay and as you say it has been a long journey but hopefully will soon have diagnosis confirmed. It is just so frustrating that when we go to Doctors with the symptoms no-one seems to listen and just put it down to Thrust all the time no matter how many times we go and say that the itch is unbearable and that it comes on at the most unhelpful moments and usually whilst in the middle of a supermarket!

16

ok so i had my appointment with consultant on thursday.

my consultant believes that i have a sexual problem. i have been discharged and told that i am being referred for psycho-sexual counselling. so basically, they think it's all in my head. that i am making the pain up!

so frustrated...2 years and back to square one.

17

Hiya miffy, Why did the doc prescibe dermovate and dialators and washes for you etc in the begining. They wouldn't have done that if there were no symptoms to treat would they. Did they say? Wasn't a biopsy booked as well . I find what they're saying unbelievable, (can't imagine how you're feeling).

Have you thought about what the next step might be coz i'm at a loss to say anything to help you here, especially after the 2 years of suffering you've already been through.

What about going back to your GP and asking for a private consultation with a dermatologist . Did you ever get to see a dermatologist coz i'm thinking it was a gyney you saw.

18

:x

Hi Miffy and all.So sorry to hear about your recent visit to ur gyni.Yes I would go straight back to your GP and demand to see someone else.You must be feeling pretty low.I was starting to think I was coping ok with it.Then I had a bad flare up.Got a quick app: with my gyni only to be told

I had caught thrush(never had it B4 in my life) I was so upset what with the L.S. as well, but she said u can catch it from a dirty glass etc from a pub.She prescribed a one dose of Fluconazole capsule.Which not only got rid of the thrush very quickly but calmed the L.S. a lot.I also got some upsetting news from my eldest sister that she to has just been diagnosed with L.S.and very upset.She went to same gyni as me and said they are saying now that in some cases it could be heredity and we both have arthritis which can be due to your inmune system.My younger sister is fine

but she dose not have arthritis.Well Miffy I really do hope the next time we hear from you.You will have had some positive news and I will be thinking of you.Till then please take care and stay positive..Kind Regards D

19

well the consultant said that she had originally been thinking that i had a skin condition but because she has tried me on the dermovate, dilators and god knows what else... then she has now decided that i don't and that i have a sexual dysfunction.

so basically... i don't experience any pain, that it is all imagined.

so while i do think i would probably benefit from counselling anyway (been so long since i last had sex i probably NEED it), i still think i need to be treated for the physical pain i'm experiencing (and NOT making up!)

so frustrating!

yeah the last time i went to see her she had said that if the cream didn't work then i'd be having a skin biopsy but this time she decided there's obviously nothing wrong with me.

i'm not a very assertive person and i know i should have insisted more but i think i'm going to call her secretary and plead for the biopsy. at least that way i'll know for sure.

i'm starting to think i'll never be 'normal' again. my relationship is going to end if this continues.

i will keep ya's posted about my progress.

thank you so much for your support guys, it means so much.

miffy