Hello All,
Have not posted in a while, have had some dental probs (and life ones too :()etc.....Anyways, I wondered if anyone has had intense itching 'down below' in fact...front & back..if you know what I mean? ;D
I have had this for a couple of years and it randomly appears (its back and soo miserable) for days to weeks then disappears. I don't think I am too dry 'down there' maybe a bit tho. I googled it and came up with 'lichen sclerosus' another AI illness, but apparently I do not have the white patches that accompany this, my Doc thinks its my washing powder (have ruled this out now) or just dry skin...is this a common thing with SjS?.....I am sure I'll have lots more questions for you all as I am quite new and am still waiting for a lip biopsy result.. so bear with me...?
Love to you all ;D
Paula
Hi Paula :)
The only things that have caused me intense itching down below is thrush and worms. (Not at the same time) Sometimes I've been able to use stuff like Canesten cream to keep thrush under control (especially if it feels more external than internal) Sometimes a pessary and a pill from the doc have done it and a couple of times I've needed heavy duty stuff like flagyl - and hubby had to be treated too.
The worms I managed to get from my kids who seemed to get them at school from time to time. yes we do wash our hands - but these things happen sometimes. Worm pills worked fine. With worms the itching tended to start up in the evening and on into the night - settling somewhat during day time.
Thankfully I've had neither of these afflictions for some time now.
I never wear anything other than cotton underwear and rarely wear tights. I think it helps.
Take care - Scottie :)
Strangley I've just been to the doc. with a similar problem. Mine was only on the anus. Intense itching. She has diagnosed it as contact dermatitis and I have some cream which seems to be helping a lot. I don't know if it's connected with SS but dry skin is so perhaps it's more likely to flare up anywhere in those of us with SS. Mind you I'm seronegative so don't have a confimed diagnosis.
Hi Paula,
I seem to have that problem now and then, but I always thought it was a yeast problem. Whatsup has a good point, it could be contact dermatitis, hummm, I think I need to have a chat with my doctor.
Patze
I too have this problem, so much so that at tmes the skin in the inside wall of the front passage splits... OUCH!!
My doctor just told me to use Sudacreme..which does help, but ithe problem does keep recurring..
I also wear trousers and thick tights for months till the warm weather comes, as I suffer badly with the coldness, so this does not help!
I use Replens at this particular time which is good ,if not expensive..
Pile ceams are quite good for anal itch and sitting in a warm oatmeal bath can also be relieving.
Since I am long past menopause tho', the dryness can drive one daft!
Dolly
Thanks all for your replies...my darn computer, I just spent 10 mins typing up a reply and had to refresh the page and subsequently lost it >:( its not contact dermatitus to my knowledge as I have changed to fragrance/presevative free w/powder and I know its not thrush as its different, canasten dosen't treat it either. Apparently lichen sclerosis is vastly under-diagnosed even by gynaecologists, if only we had textbook symptoms/bloodwork life would be much easier in obtaining diagnoses.
As it is with the vast majority of us, we spend time 'googling' lots of symptoms and end up being super-tired-detectives...which some people think translates into 'hypochondria' >:( I think my computer has fired me up ;D and my glands/lymph nodes are killing me and to add insult to injury I had tooth extracted on Monday (sorry about the rant!) on top of that my lip biopsy (done 3wks ago) scar has a big lump underneath it and my lip is still a bit numb.
I would say to anyone considering a lip biopsy...make sure it is absolutely necessary before getting it done...there that's better. :D
Thanks again for your inputs. X
" I also wear trousers and thick tights for months till the warm weather comes, as I suffer badly with the coldness, so this does not help!"
Dolly - I used to but now I wear leggings under trousers and socks. Not as tight as tights ans they come in different materials. Helps that darn itch!
Take care - Scottie :)
Okay ladies, do not take this the wrong way, I know I have my moments......
There are tights available which have the gusset missing, NO you do not have to visit any shops with blacked out windows or lacy things in he window. You can buy these in places like (UK) Marks and Spencers and probably some larger department stores in the US. They give you the same warmth as regular tights but without the gusset they do not cause the same heat around the affected areas and therefor do not encourage yeast and or other nasties.
Just a CLEAN thought......
Mim xxx
Thank's a lot Scottie& Mim for that great idea.
Why diden't I think of that?
Am off to M&S now...
Dolly.
Hey Mim,
How have you been? That is a good idea! I wouldn't have thought of it either, especially in the warmer months. Oh well, back to the stockings I go!
Patze
Dolly
My GP prescribes Replens for me. Could save you a lot of money if ou could also get it on prescription.
BTW I also get Biotene Oral Gel on prescriptions - SJS is one of the only two conditions it is authorised for - the other is for dry mouth related to Radiotherapy.
Kathyx
Dear Kathy, hope your keeping good now, and thank's for your reply..
I do get the OralBalance & Lacrilube also gel tears on script, but Doctor told me to use the Sudocream for down below..
You'd think some of the Doctors were paying for the meds out of their own pocket..
I get more good advice here! so if I find something good I'd just buy it., seeing as I don't go far these days to spend my money on other things...
Keep well, Dolly.x
seren
had this p[ropblem for years, and for me its candida/thrush.
I agree with scottie cotton unides all tha way.
I put 10 drops of tea tree essential oil in my bath as its anto fungal/bacterial which helps alot, and coconut oil down there also which kills thrush.
T x
Thanks for the advice T...I have been treated for 'thrush' with all the usual creams/pessaries and even some natural remedies and it did not do the trick as I am sure its not thrush, the GP now thinks it may be linked to dry skin :-\. I have had thrush many times in the past and for me its always accompanied by a white discharge, this other itchy condition I have has no discharge and its different to thrush ???
Its something I will persue again with the GP, its just that I have soo many symptoms I have had to prioritise them during the surgery visit....I think also this is especially true when you are awaiting a diagnosis (as some of us are-just hope I get one) you tend to concentrate on the most common sjs symptoms.
Thanks
Paula :)
My daughter has this problem at 9 years of age. Luckily it has only happened a couple of times, but I just her put a small amount of vaseline in the area. It seems to relieve it momentarily. I'm sure there are better solutions, but it is good to know that I'm not just "trying" to relate it to SJS.
Karen
Paula, I just posted a reply which noted I got a Dx of Lichen Sclerosis (can also be spelled Sclerosus) last summer. My gyn did a biopsy; the lab report came back positive for LS. I had burning rather than itching; it was v. uncomfortable! From what I've read, sometimes LS can only be Dx'd via a biopsy. I'm fine now> I use Clobetasol (cortisone cream) once a week and have learned to pat myself dry after urinating and not to rub the area while showering -- avoids irritating the area.
Prairie gal
Yes I have that problem too from time to time. I have been using Balneal or CVS has a perennial cleanser that is a little cheaper. It works for me. But everytime I am on an antibiotic I need to use monistat for a yeast infection. When I was very young I used to get thrush all the time. But after I started taking showers they cleared up. ::)
Aw Karen, it must be difficult with your little girl having it so young, I understand it can occur at that age. Thanks Prairie Gal, yes I understand a biopsy is one mostly sure way of getting a dx. I am sorry you and the others have this miserable condition. I too have used clobestol but have read it only makes it worse in the long run, as it thins the skin too much over time. I bought some paladin (I think) from an online US site altho I find it does not really help the itching. >:(
Since I first posted its much better it still comes and goes but its not lasting very long, thankfully!!!
Oh Girls, the joys of being a woman, along with all this I think I may be peri-menopausal (I'm only 42) I get sooo hot its horrendous.... sorry to be sexist but men have no idea :D
Paula ;)
Paula, I know the Clobetasol thins the skin, because it happened to me after the initial recommended treatment which was to use it twice a day for 6-12 weeks and then drop to 1 or 2 times weekly for maintenance. I had a bit of external bleeding after 7 weeks of using it twice a day so I saw the gyn. She said to stop using it for a few days, then gradually wean myself off of it since it's a strong steroid.
I now use it once a week and apply Vitamin E oil externally 3 or 4 times a week to help with dryness. This has stopped the awful burning and irritation I had before seeing my gyn initially. It's important to keep this chronic condition under control because it can cause some really weird things to happen with the tissue down there. I think I'll start using the Clobetasol just once every 10 days and then ease off to once every 2 weeks to see if that keeps the burning away because I don't want to use it any more than necessary to feel comfortable.
Prairie gal
I also have the itching - both places. I have Lupus and Sjogrens and my gynecologist did biopsies and cultures and could only come up with - I have chronic skin problems there just like my arms and hands. I guess from the Lupus. I do know it is terrible and one can't understand unless you have it!! The steroid creme she gave me does help.