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Lichen Sclerosis. I've just been diagnosed. Anybody know about / suffer fr this???

(12 Posts)
linserella Tue 14-Apr-09 21:40:26

Just diagnosed today after suffering for the better part of a year. I'm 38 and told this is young to be suffering it as it usually effects menopausal women. Keep on with the steroid cream, it seems there is nothing else can be done and with any luck it will clear up itself hmm It would be good to hear of anyone else's experiences of this?!

vezzie Mon 20-Apr-09 20:01:05

I have only just seen this - I hope you are still around.

I have not heard of the connection with menopause - I was diagnosed at 32 but it is clear in retrospect I had it for many years, even perhaps as a child. I used the steroids for a bit but don't seem to need them now. I think there may be a life style / emotional element to whether / when symptoms flare up.

I don't know anyone else who has it; of the few people I have told about it, no one has ever heard of it. I hope you are ok and the cream gives you relief - if so, ime it is nothing to worry about; if not, there should be some other way of bringing symptoms under control.

Good luck!

linserella Fri 12-Jun-09 22:08:34

Thanks vezzie, not been on here for a while and just seen your message so i'm sorry for delay in getting back. Good to hear.

Research into this condition is thin on the ground. It's believed that triggers can be hormonal hence the high percentage of menopausal women with it. There is also some evidence that it can be triggered by previous scar tissue in this area which i am convinced is the case with me. I tore badly when giving birth and had to have 3 op's to stitch me together again as the wound kept breaking down. This remains the most vulnerable and most prone area for flare up's. The only other thing i have gathered about it is that it is an auto-immune disorder.

I'm very encouraged by the fact your symptoms have gone! I'm ok thanks, I'll keep on with the steroid on flare up's which tend to be every 7-10 days. Found a great forum Thanks again :-)

norksinmywaistband Fri 12-Jun-09 22:20:09

I have just been diagnosed with this, just mentioned it on another thread then saw this in active convos.

Would definately agree about the emotional trigger bit.
I was told that if not kept under control then sometimes surgery is needed due to tissues becoming tightand making normal function difficult

norksinmywaistband Fri 12-Jun-09 22:25:53

Just seen you on the other thread - strange how noone has ever heard of it then we both pipe up in such a short time.

I am 36 BTW and was also told about the postmenopausal bit.
I have been investigated for early meno through negative, mainly as hormones/ cycle all mucked up when I had my mirena removed. the symptoms started very soon afterwards

linserella Fri 12-Jun-09 22:26:54

norksinmywaistband, yeah weird, just noticed that myself! I'd never heard of the emo link - v interesting. Do you mind me asking how old you are? Did this just come out of nowhere with you? Do you use steroid? Yes I have read of dreadful extreme symptoms and thank my lucky stars mine are less severe but bad enough in it being consistent flare up's which only steroid can heal.

norksinmywaistband Fri 12-Jun-09 22:32:31

I also had a traumatic delivery with dd and had v large episiotomy and forceps that went wrong injuring me and DD.
I had not linked that to the LS though.

I just felt it was due to the hormonal stuff.

Unfortunately it has caused horrendous damage to my marriage, due to sexual problems since it began.
We are hoping to reconcile, but have a long road to travel <optimistic emoticon>

linserella Fri 12-Jun-09 22:32:44

right. seems like trauma to the area can be enough to trigger this? I'm becoming more convinced of this. It sounds (to me) like this was the trigger with both of us. as i said before - 3 op's to the same area then bang - LS. so little out there and so little research. definately check out - forums and info on it. take care.

linserella Fri 12-Jun-09 22:42:59

so sorry about damage to your marriage sad i know how sex can be painful, it feels like i'm gonna split open sometimes. be aware you're not alone, there is a lot of support out there on designated forums (2 that i've found). it's reassuring to hear from others who are going thru similar.

to hear of your traumatic delivery convinces me of the trauma / scar tissue trigger all the more.

your husband perhaps needs to read up on this and become familiar LS so he can understand and make sense of it? all the best[hugs]

hairycaterpillar Fri 12-Jun-09 22:50:37

lichen sclerosis patient information leaflet

linserella Fri 12-Jun-09 22:56:31

thanks hairy, you suffer from this too?

hairycaterpillar Sat 13-Jun-09 19:46:27

Not a sufferer no but have encountered several people who are through my line of work.

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