Is there a UK helpline for Lichen Sclerosis sufferers?

Hi DLB129,

I know just how your feeling, I've never felt so alone in my life, I found out a few weeks ago & at the time my partner of 10 years + was great, but his attitude towards me this last few day's has really changed. I'm 46 & started going thru' the change a few years ago. I feel so embarrassed to talk to anyone about it, even tho' I have wonderful close friends who I know would be so sympathetic towards me but just can't bring myself to discuss it with anyone.

I have googled a few sites & read quite a lot about it, but I haven't actually found any sites as such, unfortunately apart from here I feel we are pretty much on our own, because it's quite rare & not much is known about it, I think we just have to post any info & tips we possibly can to make other people like us aware & support each other as best as we can.

I'm sorry this isn't overly helpful to you, but you are welcome to talk to me & maybe we can go through this together & learn as we go

Sorry I can't be more helpful, T xx

Hello T - thank you so much for your reply. It sounds like we've had a similar experience regarding our partners. I've been with mine for 14 years - we got married last year but his attitude has also changed - he is a bit younger than me so I'm really not sure what to think now.

I can't stop crying when alone - it's bad enough having the pain and discomfort without the enormity of what this will mean to our future in the physical sense. I think I'm still in absolute shock so I'm probably sounding a bit incoherent sorry.

How are you coping? I've paid to see a consultant and he was pretty good but laid it on the line that it's pretty much a lifelong condition and gave me lots of information etc. The main one was that steroid cream can be used as and when required when I have a flare up. However I'm finding it a lot worse this week and not sure if I have cystitis too ...sigh I could cope with any of the pain and discomfort if I felt my husband was sympathetic but he seems to be struggling and his attitude towards me has changed so much. I have never felt so down and lonely in my life. I hope things get better for you.

D xx

Hi DLB129,

http://lichensclerosus.org/

I did notice in the contact details in the site linked from above that they do offer Skype consultations if that is of any use.

Also, I don't know if you have seen the LS list of discussions in this site but it is here https://patient.info/forums/discuss/browse/lichen-sclerosus-1341 if there is any useful information from other users.

Regards,

Alan

Emis Moderator

Hi DLB, i'm sort of coping o.k I think!! I had all the red raw sores & tear's etc...I have bought Tea tree oil & have to say they have healed so well & quickly, so that's 1 less thing on my mind at the moment. I have ordered Emu oil...& hoorah!! it has arrived today, so hopefully that will help to soothe some of the dry areas . I'm using Canestan HC cream at the moment which has stopped the itching, but i'm back to my GP early next week for her to get me on a stronger cream .

It unfortunately does sound like we are totally stuck with this condition, but i'm hoping I can get it under control a.s.a.p. .

I've had a fantastic relationship with my partner of over 13 yr's but at the moment I feel like this isn't going to continue, like you my partner is younger than me & he's also always been my best friend, so I am finding it particularly hard & do feel SO alone .

I know it's agony when you need to spend a penny, but if you do suspect cystitis you have to keep drinking to flush it thru' & keep dabbing & just keep plying on loads of your cream. It will get better I promise .

Have you tried the tea tree oil at all?? It must be 100% pure, DON'T get the cheaper stuff, you can get it online at Amazon, it cost me about £11.00 & has been worth every single penny, o.k it does leave a warm tingly sensation after you've applied it but it's not uncomfortable or unpleasant or burn, I do find it soothing because it is healing me, so that has made a big difference at least when I sit down, it's know where near as uncomfortable as It was which is a huge relief as my job consists of sitting from 6.00 - 5.00 . I want to concentrate on getting my self on track really & will tackle my relationship later, sounds harsh, but mine isn't doing much to support me at the moment, so I feel I will have to do this alone for the time being T xx

Hi my husband is sort of supporting - when it suits. I bought some odds and bits off a sex toy company via the internet - don't know how good your sex life was before all this started - ours was pretty good. Now it's a case of can I.... can't without loads of lube, can't without checking first, some positions are impossible despite buckets of lube (just won't go in and is painful). so, I came to the decision to take matters into my own hands so to speak. When we can, we can. When we can't we use toys (well I do on him) and it's brought us much closer together I think. Personally I think he's selfish at times and I've told him so. I've also said when we've been arguing that one day he won't be able to get it up due to his age... ha ha and that he'll need Viagra. I've also tried to make him understand by saying that he wouldn't like it if it was happening to the end of his willy and I didn't support him. Things are much better now, and this forum has been an absolute god send, as like some of you I don't want to discuss it with my friends and be the topic of conversation when I'm not around. We are all in the same boat here and it's so good to be able to open your heart and feelings here and know what you say is helping others. Keep your chin up

Blue x

Hi Blue, Glad things are going o.k for you in the "bedroom" dept. It's been difficult for me as my partner & I were having an amazing sexual relationship until recently, Very regular, infact almost every day, so for us this really is gut wrenching, I'm lucky that I don't need to use any form of lubrication, but my partner is frightened to death that I might tear even worse than I do sometimes.

We already have lots of "gadgets" & over the years have added to our collection, but for me I do get so frustrated because "the Earth doesn't move for me". He's actually finding it more difficult to understand & cope with than I am, I've begrudgingly excepted the fact that this is happening to me but my partner is so devastated he cannot comes to terms with it.

I'm back to my Doctor tomorrow so hopefully I can get stronger steroid cream, but I am going to start looking into this "stem cell surgery" I've done some research, & it can be quite costly, but what price do you put on your health & relationship, especially when you love someone with all your heart, I'm 46 & my partner is 38.

We don't have savings, but if it came to it...I would consider a loan to get this treatment done, even if it only worked for a few years just for the escape to go back to some sort of normality for a couple of years.

I can't imagine it would be available on the NHS, , best wishes to all T xx

I have done a little research & stem cell treatment sounds quite promising. There is a Doctor in Italy that is doing this sort of surgery, it looks like it costs around £5,500 - £6,000, apparently he only charges for medical equipment, treatment, etc & Not for his time or expertise. Purely because it's still quite experimental, hence why it wouldn't be available on the NHS, But from some of the affidavits I've read, people are really pleased with their results & have seen massive improvements medically, mentally, physically & the reconstruction is amazing, but this is what I've read, I have not had this treatment done myself. But if I could a££ord it now, i'd be on the 1st plane to Italy with you .

Also there is a clinic on the West coast in the USA but I haven't done much research on this one yet, as I wanted to focus on one at a time & not become to confused with all the reading.

Sorry I can't be more helpful, but maybe there is some hope for us all best wishes to you. T xx