Waiting diagnosis, and I am really depressed over this

Women's health
1

Hi there,

I am just waiting for my account to be activated so writing as a guest at the moment. I am 34, have a beautiful 3yr old little boy conceived from IVF and I am a single parent as my ex husband left me when my son was 4wks old.

I have severe endometriosis, eczema, raynaulds disease and rosacea and now awaiting to be seen by the hospital gynaecologist/dermatologist for suspected ls.

I have had the unbearable itching for about 3 years but the ulcers didnt start until August 2008. I went to the dr and they presumed it was herpes, and treated me for it, but the tests came back negative and I didnt respond at all to the treatment.

They then tested me for behcets disease which also came back negative.

I went back to a different dr this week and as soon as he saw me, he said my inner labia was fused to the outer, something I hadn't even noticed. The other 2 useless dr's hadn't even picked up on this and told me the sores were caused by eczema!!

Without even having a biopsy and after reading more on this condition, I KNOW this is what I have got and I am scared witless.

I am a single parent to the most amazing little boy ever after thinking I would never be a mum. His dad does not bother with him much, and doesn't have him without my supervision, I dont have much babysitting support and I have never had a night apart from my little boy.

Sex is not painful for me at all thankfully, unless its rough and it causes a few splits, but thankfully actual sex doesn't hurt for me...but my question is will it eventually...I have read some awful stories on here thats just made me cry with worry, that I am not going to be able to have sex the longer it goes on.

I have already lost nearly all my inner labia, after only having ulcers for a year and a half, I have been using betnovate for this time, but no strict routine as to when, just if it itches as said my dr thought it was eczema.

I also have the anal itching and apply germaloids to that which seems to help.

My main concerns are if my currently fantastic sexlife will cease to exist the longer I have this awful condition, and secondly the word cancer panics me no end.

Me and my son have such a strong bond that it is too much to cope with that I may not be around to see him grow up and also fact if anything happens to me, life as he knows it would be gone, no familiar surroundings, no me and I just can't stop crying at the thought of not being there for him.

I am sorry if I seem as though I am over reacting, but I have had so many bad things happen in my life that I just can't take much more.

I am a healthy person, I have never smoked, I dont drink, I eat healthily...first it was severe endometriosis, the complete life wrecking pain and agonising pain and fact I couldnt conceive naturally, and now this. I had just got my endo symptoms under control after having my little boy and thought life was worth living again...so why this.

I am past myself. I have a wonderful partner now, who I have known since I was 21, but he lives in wales at the moment as has a divorce to go through, I feel so damn lonely and I am so desperately worried, please can anyone reassure me. sad

xx

2

Hi, couldn't go to bed without replying to you. I started having problems in my thirties and I am now 60. I still have my husband and yes we still have sex but only about once a fortnight (but come on I am a pensioner now!) It seems you've had to cope with an awful lot of ailments, but now you have to start to think differently. One thing I learnt is negative thinking and stress is one way to make your symptoms worse. Great you eat well and don't smoke, but I'm sure there are lots of things you do do without realizing you are creating more problems. When you have your results, you can start to get better. LS is a high maintanance ailment to have,once you get your symptoms under control, the trick is to keep it at bay.Read the postings and try to take positive advise. Find out a routine which suits your body,don't let these problems beat you. As you say you have a wonderful son and a future together, and now you have blog full of people who understand.Take care x

3

:D H i to you both I am glad that you had the reply from lisette hope has not left you you just need to use the right meds that will help we are all different how we cope and what works for us I was lucky my gp new straight away what my problem was and I to had that anal itch as well as the splits in my labia but they have not fused so I seem better off than some ladies I found that preperation h wipes help I am using fucibet which seemed to stop most of the itch/scratch syptoms very quickly I dont wont to use the dermovate at the moment so ask your gp to prescribe it for you others have found it help sex I think is important to all of us you might find something like ky-jelly for lubrication will help

4

hi beemer, I felt so worried for you when I read your post...Firstly love, dont stress yourself out because stress wont help you.This is an auto-immune condition and you have had conditions related to auto-immune i think you will find already. Trauma at childbirth can start a Lichen site off too. Many have had the condition for years and years and never realised, thinking it was thrush or something else or they were too embarrassed to ask. Now they are being treated and it is controlled. Secondly as the girls said you need proper medication to set you on the right path to deal with your fusing...Your GP or gyne should have given you, ages ago, the right steroid treatments to try and stop the Lichen from growing and fusing and a decent barrier cream to ease the itching and the soreness and make you feel comfortable,.....If you get used to a daily routine with your high maintenance bits and feel more comfortable your esteem will rise again and your fear will abait. The fusing will calm if you treat the lichen and there are ways to medically defuse sites if needed...Yes, this is a precurser to skin cancer but not for the majority. A small percent of a huge huge number of women will be unlucky but reasurred that it is our job to keep our leasions at bay... Try 'yes' lubricant from an internet company by the same name (Excellent stuff but a little pricey) for lubrication, if you find normal KY etc is not enough. then Sex is the best way of keeping open your vagina and the more sex you can have the stronger your skin and its elasticity will hopefully, in time, become...I was put on an ostreogen cream which i injected into the vagina firstly for a few weeks nightly and then a couple of times a week...That helped a great deal... The girls will tell you it is trial and error. Read all the different message boards ,as the personal preferences for treating and subdueing your symptoms, such as washing with an emollient cream and not letting soap near you.wearing non scented mini pads so that the detergents in your clothes do not come into contact are all mentioned.....

The shock will subside and hopefully the worry lessen and as we all are learning dont be fobbed off by a medic who does not know enough about this to treat you properly...change doctors if you have to..go and speak to the 24 hour docs in your drop in clinics ...do anything but dont give up or give in.....You will be fine and your little boy will cherish you for your whole long lifetime........xx