Waiting to be diagnosed and terrified about biopsy - help!

Hi. I'm nearly 42 and for the last 8 months or so have been having the most horrendous itching coupled with increasingly bad pain every time my husband and I have sex.

I went to the doctor for my routine smear and mentioned it to her. Putting the speculum in was painful and when she took some extra swabs, they came out covered in blood. I was also given treatment for thrush although I think my doctor and I both suspected it wasn't going to help.

The smear came back clear. I had to go and see the doctor again because the itching was starting to drive me crazy. I was scratching until I bled and it now looks as though I have two splits on my outer labia which obviously don't heal as little air can get to them. She referred me to a gynaecologist at out local hospital and the day came when I went to see her.

What a nightmare she was. I felt like she spoke to me like I was a child, she was very abrupt and then just about rammed a speculum into my vagina. I was in tears of pain by this point. She left me with the impression that if I did have LS, it was only a small step to cancer. I was told I'd get an ultrasound and a biopsy done and the appointments would be sent out to me. I didn't really take in much of what she said as I was so upset. My husband had came into the room with me and I don't think he was too impressed at her either!

I had my ultrasound done last week and I'm now awaiting the biopsy. This isn't scheduled until 29th April and I've got myself so worked up about it that I often burst into tears.

I'm absulultely terrible with pain and the thought of getting the biopsy done fills me with such fear although I know it should confirm one way or another whether I have LS. Getting the local anesthetic done seems like a nightmare too. Before I worry myself into a frenzy, can any of you ladies please reassure me or share your experiences? I feel like such a big baby and pathetic for being scared.

I've tried various creams and gels such as Bio-fem, vagasil and sudocream, haved washed with soap free cleansers and aqueous cream and still can't seem to get any relief from the itch. Please help!

hi Kitty B

you poor thing, sounds as though you've had a horrendous experience with your gynae. For a start as i'm sure others on this site will agree - it's not necessary 'the next stop to cancer ' - like anythng else she probably had to tell you the worst senerio. Try paladin cream which you can buy on ebay or **** - it has helped many of us with the itching and acts as a barrier cream. She should have given you some dermovate or another cream like that. Keep washing in aqueous cream and ask your gynea or gp for some anisthetic cream called intagel to use before sex. Try (ha ha easier said than done as stress aggravates l.s.) not to worry too much about the biopsy as the local only lasts seconds and then is numb. Hope it all goes on ok - mine's on 26th march , 2nd one - let us know how you get on. take care

gbs

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Hi Kitty,

It sounds as though you met a very impatient doctor, and there's really no excuse. I had a biopsy last year, with local anaesthetic. It did sting when it went in, but wore off fairly quickly, it did work though and numbed up well!! Hopefully it won't take long before you get a diagnosis. LS is 'grotty' but can be managed. I saw my dermatologist (referred by gynae), who said she was pleased with progress, but there was still some active disase on perineum. She gave me a different steroid cream. Betnovate which is less strong than Dermovate, to use for 6 weeks he twice a week. I ahve appointment for 4 months. She is hoping that when I see her I will be in 'LS remission'!! so it was worth using the steroid creams regularly for a short term. She will then see me once a year as unteated it can cause cancer, but, if treated usually doesn't. So think positively, if its LS, and its treated, you might be saving yourself from problems in the future. Once treated there should be no reason for you not to resume activities . I think we all find it hard initially, but it does get better. As for the doctor, I would ask to see someone else or be referred to a dermatologist. Why not speak to your gp and discuss? Please keep writing on this website, someone will always rspond and you'll knkow you're not alone. It does help.

Hi cym. When you say LS remission is that because the white areas are now pink and the soreness has abaited...I have not had soreness and flares apart from one in the last 8months and the white area i zapped with my steroid a little more than usual to get it to disappear, which it has but......I have both inner labia and clitoris almost disappeared. Have you had disappearences and have they stopped going even further since your last appointment and before this current one the amount of time you mention above. My latest report says thatI have made brilliant progress with the maintenance of my LS but I have lost these parts,but I have done it without symptoms. Will this persist do you know. Take care .S

Hi, My dermatologist said she was hoping to get me into 'remission' which she explained to me, yes, as the white patches disappearing which they have done from the vulval area, clitoris and around the anus, but there, but the LS is still 'active'(white) on the perineum, so I am using Betnovate, milder steroid twice a day for 6 weeks, then twice a week. Still have some clitoris, but I don't think it matters that much as the sensation is still there! I did have a flare up about 3 weeks ago but this soon settled with steroid cream. Although there was some ulceration, my dermatologist said to still use it , as the ulcers indicated disease activity. Inbetween flare-ups i'm coping quite well, I use Diprobase as a wash, and nothing else unless there is a flare up. I use Sudocrem when soreness starts, and this works well for me, but everyone will have their own favourite. I am lucky in that I have an excellent knowledgeable and sensitive dermatologist who is interested and delighted with my progress. I put this down to using the creams as and when necessary. I don't like to iveruse the steroid creams, but if it can get me into 'remission it is worth it. My doctor also draws diagrams for me to show the spread of LS, so I kknow exactly where to apply creams. This doctor has been so helpful, and my gp is learning too!! Hope this helps.

Thanks cym.....My doc and hospital are great too. I have been lucky and llike you treat and zap as needed. I use my steroid sparingly but whenever needed so am not wary of it .I have only had one flare in 6 months , a little sore sensation a couple of times but used a little extra steroid and ...gone. No ulceration t all.. it is keeping it at bay as far as flares and white patches are concerned that is obviously uppermost and my barrier cream and emollient wash suit so Im happy. I still have sensation as you say but not a lot of clit left...I am more wary about the possibilities of the urethra tube narrowing as I do suffer from cystitis a lot.. My last examination though said no stenosis, so relief for now.....Thank you for post.. Take care S.

Thanks to everyone who has replied and forgive my lateness in getting back here - my pc was being repaired, then there was a family bereavement and all the detris of life.

My biopsy is now just a day and a bit away and I'm trying very hard to stay positive. I think I'm preparing for the worst case and hoping it won't be as bad as I think. Since I last posted I've got some Trimovate cream from my doc and some Paladin from ebay. The itch has got significantly better than it was.

Sex with my hubby is practically non existent now as the pain is just so bad. He is the most wonderful, understanding man and his only concern is to get me well again. I feel so bad about it though, as if I'm letting him down. He's coming with me to the hospital for the biopsy and wishes there was something he could do for me to ease my worries and fears.

Keep your fingers crossed for me!

We will all be thinking of you Kitty B please try to remain positive....You have, as I have, a lovely man who is concerned for you and wants to do all he can. I too went through the guilt of not giving him the relationship perks so to speak that i felt he needed, but all they really need is to know that you love them and that you are doing all in your power to help yourself to get on track with LS and learn that you can control and live a happy life with it..Good luck and keep us posted. Mal

I feel awful. I'm sitting here crying my eyes out because I've got so worked up about the biopsies. Did anyone else feel like this?

Hallo Kittyb

From reading your posts your itching has improved after use of steroids and paladin. I would say that the tissue in your vulval area has healed and therefore a biopsy will not cause you too much pain. Having the biopsy itself is painless as the area will be numbed. So all you have to focus on is the healing process after the biopsies.

I had 3 biopsies recently and like yourself I worried myself sick! Once I had the actual biopsies out of the way I concentrated on healing the area.

Ice packs will prevent inflammation which happens after a biopsy. Also I took LUKEWARM baths with 5 drops of lavender every morning and evening. Not too much water in the bath just enough to soak the area!! Also rest for the first few days and allow the stitches to heal.

Keep in touch and ask any questions if you are unsure or worried about the healing process. May