Worrisome

I've had it about 3 and a half years but was diagnosed almost 2 years ago

I've had this problem for over 10 Yrs now and at last have been subscribed with a cream  that has cleared it up  I haven't had an outbreak for over 8weeks it's a terrible condition  I sympathise with anyone that has it  mine is so advanced now that no clitors is visible and it's impossible to have any sex but this cream has cleared up the itching and bleeding  it's calle Eleuphrat cream  and has helped me  

I've had this condition for over 10 yrs now and I've no Clitors  and hardly any vaginal opening but I have been using a cream that has stopped the bleeding and soreness which is a relief so  at  the moment  no pain  feel sorry for anyone with this its a terrible thing and no real cure  

Where is all this information at that I need to know? I'm not going to even think about dilating myself. Do I have to?

Hi Chrisy

How's your foot, hope it's healing well and your starting to get about a little bit..

Take care

Karen Xx

Have you listened to the hour long webinair by Dr Goldstein. The link for it is pinned in one of the first posts on this forum. It is worth listening to. So much information about the disease that will help you understand the condition and how to treat it. Hope this helps you. X

Hi Karen, just wrote a long reply then accidently deleted it. Thank you for asking. I am getting there very slowly. In this cast till 1/7/16. Can't walk till then. Hubby has invented an adaptation for my crutch which means with a bit of help I can get up and down the stairs outside of my house. Not able to manage a big flight of stairs but I am sure a younger fitter person would. Physiotherapist was very impressed and has asked him to contact the crutch manufacturers to get it made for others. He will when he has time. At least I don't have to have ambulances to get me in and out for my appointments. Went shopping yesterday which was heaven.

Had bad ls flare last week but have managed to calm it with Clobetasol and Sudocrem as it was caused by inability to get to loo in time on many occasions so I treated it like nappy rash. Worked well when Epaderm didn't do so well.

How are you doing? X

Lovely to hear from you Chrisy, technology is a nightmare it's so annoying I am always doing things like that... Thankyou for your patience and re writing 🙈 don't know how your managing in that cast with all this hot weather must be driving you mad!!!! Not too long now though and I'm glad you managed to get round the shops, a change if scenery!!!!

I had my teeth cleaned last week and am half way through my bridge but my mouth as ached all week, the cleaning was a nightmare, I'm back there next Monday... Having a few problems with my knee still keeps giving and this left leg seems to pain a lot will mention it when in back at the doctors, need to go back in a couple if months about these anti depressants I'm on..

My daughters home from uni on Friday so I'm looking forward to seeing her back till September.

Xx

Hi I found that because I wasn't walking properly it caused my knee and hips to hurt as well. I am reassured by the physiotherapist that things will hopefully settle with rest and correction of my gait.

Fingers crossed that will be the case for you too and when your knee is sorted that will sort your hip.

How lovely to see your daughter for the holidays. I hope to see mine at the end of September. She is coming up for a week from the Cotswolds.

I hate having my teeth cleaned as it always causes an lp flare in my mouth. The dentist does it for me at the same time as my treatment as I won't see the hygienists. My lp seems settled at the moment thankfully. Maybe I shouldn't say that lol. :-S Tempting fate. I hope you get all your dental work finished soon. Then you can relax and get the lp calm. Nice chatting. X

Dilation isn't really an onerous task and worth it surely to stop closing over.

Speaking of lp.... I know I have ls but I'm not sure if I may have developed oral lp too. For the past year or so, every so often, I get a sensation of burning mouth. Mostly it's on the roof of my mouth and the inside of my cheeks and on my gums. When I try and look in my mouth I cannot see any ulcers or cuts or anything. Who do I see to get this checked out? I spoke to my doctor about it the other day but it was just typical that my mouth was feeling fine that day and I had no symptoms.

Also, when I eat it seems to make it worse. It doesn't have to be spicy food that I'm eating. Even mild food irritates it.

Hi, I have similar probs but I had white lumps and marks inside

my cheeks. I had biopsies which showed no cancer. Lp. appears

anywhere very similar to ls. Makes eating lots of foods a problem.

Mine improved greatly after I started having coconut oil mouth

rinses. Not cured though. Find dental treatment can aggravate.

Hi Chrisy

All done at the dentist now thank goodness... really pleased with my bridge just glad it's done with... hope your okay and it's getting easier for you Xx

Hi, glad you are finished with Dentist. I hope it didn't aggravate your lp. Still in my cast. Getting very bored. Trying hardest to prevent ls flare again. X

Hah finally let's hope you get this Chrisy... Like you I have wrote it once 🙈hope everything's going well for you love not long now another few weeks is it the 7th!!!! Nearly fell down the stairs this morning with my bloody knee this left leg is a nightmare going to have to go to the doctors soon when I bend it it's awful so is my foot... Did your start like that? How's your other leg now Chrisy Xx

Hi Karen, sorry to hear your having trouble with your knee and now your foot. Have you tried using a knee support. Sports ones are very good. I got some in our local pound shop for my husband. He says they are every bit as good as the one's you get in the pharmacy. I would go to Doc's asap if you are nearly falling. A bad fall could be serious and end up costing the NHS lots of money. I get my cast off on the 1st then onto a walking boot for 6 weeks hopefully. The first foot is great. no where near as painful and no plantar facitis now x