I have had this diagnosed with this distressing disease in Feb '19 and started on Dermovate from my GP then had a referral to a dermatologist. Instead of waiting 5 months for a NHS appointment I decided to go private as i was in so much discomfort down below. The soreness and itching which migrates from front right to the back is awful. Sitting is bad with a bad flare up and any intimate relations with my husband is out of the question which I find absolutly heartbraking and feel totally isolated and helpless. The dermatologist said to stop using the Dermovate because it thins the skin and gave me Protopic to use at night and Elocon during the day if there are any problems, which there are every day so I just keep using it. My GP said that Dermovate doesn't thin the skin in quite the same way so I'm confused as to the best treatment. My next appointment with the Dermatologist is in August. I can't talk to anyone because its so private and awful and I feel washed up at 58yrs when I'm usually quite perky and feel very feminine. The thought of having these symptoms this bad forever is unbearable.
At the moment the perineal area is so sore the the skin is broken i can barely wipe it after spending a penny or sit at my desk at work. I think this has been brewing for a few years but as there were no white patches i was treated with Vagifem pessaries for dryness and I just thought it was something to do with the menopause.
I'm so sorry for the drawn out post but I just somehow need to see if anyone has had the same probelm and has it under control so they live a normal life. Has anyone had a severe case and managed to have a healthy sex life? Nothing at the momebnt makes much difference so even if it takes months any light at the end of the tunnel would be welcome. Coincidentally I lost my father in Feb and it seems everything escalated then, not sure if there is any link to stress or whether anyone has any experience of other treatments or diet. I'm aware its not curable but any help would be so much appreciated. Thank you
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LollyJJ
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I’m sorry to read your going through this I suffered for 2 yrs when I was 32/34 and used many steroid creams etc and finally had punch biopsy’s done which came back clear for lichen. I was then seen by a gynaecologist with a special interest in dermatology now I cannot remember exactly what I was prescribed but I had 2 weeks of a certain antibiotic 3x a day and 3 weeks of 1 a week which I’m sure had an antifungal antibiotic nature. The lady said she didn’t know why it had worked for lots of ladies with lichen and me with changes to skin but it did. Sorry I can’t really offer advice but wanted you to know your not alone and I understand the painful/uncomfortable feeling and also the lack of being able to have intercourse as 10 yrs later mine has flared again. Hope you get treated quickly x
Hi, I'm sorry you've had this problem as well but you can't imagine how supportive it is just hearing from you. I had the biopsy as well to confirm lichen but at my next appointment I'll mention the antibiotics. I hope your current flare up settles, do you think anything triggered it? x
Yes I do believe stress has bought mine on again so think maybe your right about your flare now being related to losing your father.( sorry for your loss)
So sorry to hear what you are going through. When I was looking for a solution to my own problems, painful sex, which happened shortly after I was diagnosed with scleroderma, I came across an article relating to lichen sclerosis which mentioned laser treatment. I can't remember any more about it but maybe it is something you could look into. I still haven't found a solution to my problem but live in hope
I'm really sorry to hear what you're going through. I had a big flare up with the symptoms about 5 years. It was linked to the scleroderma too as my vaginal entrance almost closed up as well, like the tightening around my mouth. I had punch biopsy, which confirmed lichen sclerosis, and an operation under local anaesthetic to open it. The gynae dermatologist said I could keep using the dermovate as thickening the skin wouldn't be a problem. I felt9resppnd much better after a few days and only have occasional flare ups which quickly respond to dermovate. I use oestrogen cream 2x week for post menopausal dryness.
I hope you get some relief soon. Don't despair! I've had scleroderma for 15 years and had multiple symptoms which have been dealt with and I cope with pretty well, and still have a fairly active life since retirement.
Hi thank you for the information. The antiobiotic and laser treatment is interesting and certainly something I've not found any reference to before. If anyone does find the name of the antiobiotic that would be useful.
The protopic ointment i'm using at night (non steroidal) doesn't seem to do anything and the dermatologist I saw a couple of weeks ago said to stop the Dermovate because it causes the skin to thin and prescribed Elocon for when symptoms are present. Elocon is less strong than Dermovate and not only do I have symptoms of soreness, bruising broken skin every day especially around the anal area it does not seem to be doing anything at all. I've had conflicting advice from my GP who is lovely but she said Dermovate wasn't a problem for this condition. I'm trying to believe that I need to give the Elocon a longer time to work but I have to sit at my desk for long periods and its so sore i have to tilt on one hip as it all feels like bad saddle soreness down there. I'm eating a high fibre diet to prevent constipation because that area flares up every time I go to the loo. Sorry for the details but even patting myself gently after visiting the loo causes the front and back to sting and burn. Just talking about it on here helps so I am truely grateful for all input.
Hi Justmai, I'm so sorry you are having a flare-up its so horrible isn't it but I do sympathise. I hope you don't mind me asking but my situation has been going on on for nearly 4 months. Did you have a stage when things settled down so to speak and everything could be used with comfort? I only ask because its so sore and bruised down there i would like to know if there is any light at the end of the tunnel and what helped. Have you used the Fucibet before with success - or anybody else for that matter? I am interested in the antibiotic approach and feedback on this. xx
My dear, I have not much medically to offer in advice. Out of the need for just creature comfort may I suggest a few things to clear the loo concerns when at home. They may seem odd but worked for me as a mother in avoiding diaper rash in my babies. Continue to pat, if possible pour water to further cleanse area, pat dry again. Then before recovering your undies and clothing, on low air, use a handheld blow dryer to dry the moisture in that area. (Safely, electrically away from any water source) Then, apply a light coat of baby oil with aloe around anal opening to assist and coat the skin area before the next loo visit.
Also, at night, sleep panty free to allow skin to breathe. Along with your diet change you’ve started, try two (2) gummies daily of the Advantage Digestive Probiotic (not prebiotic mixture). It has helped me tremendously with other issues in that area. Please keep us posted on results. It’s good to know what works for others, especially if you discover the name of the antibiotic. Thanks for sharing the info regarding the vaginal creams, as well.
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Type of scleroderma?
Skin tightening
Trouble swallowing
Private or NHS diagnosis? Due to IVF.
Dizzy unbalanced spells and flying 
