Feeling low. Struggling at the moment.

Elizabeth,  I am new to this world, so I am reading all the info I can get on this forum.  I try the suggestions and hope to find what helps me.  Everything I have read recommends we be very careful with the Clob.  I have never read anywhere of using it three times daily.   So I wouldn't use it more than twice a day and then I would cut back on that. Do you have good doctor that you trust and you feel is helping you?  That is very important.

Thankyou yes I do.  I am a little worried about the three times a day application.  Is this what you have been told to do?

Hi Elizabeth,

i too am a newbie to this site but having read all threads and listened to a lecture on LS i learned one of the most important things we can do is use the steroid exactly as prescribed, not just that but it is essential to rub it in for 90 secon so that some of it can penetrate the deep layers of skin where the inflamation lies. Apparently only about 30% absorption takes place at the best. Also when the symptoms subside or go, NEVER leave off using the steroid cream, always use it once or twice a week to keep at bay, i truly hope you manage to keep it away from your vulva.

Caroline x

Me too. Three times a day is excessive. Just read another thread where someone did damage to her clitoris by overusing it. More is not better.

Thanks hanny.  I have a sitzbath too.  Best thing I ever bought.  If I am sore I can even use it to wee into water to dilute the urine.  Makes things far more comfortable.

Hi Chrisy,

you are probably on hols now, let us know how it went. I too was so touched by the concern and kindness shown on this site by all the lovely ladies. Its SO good to know there are others out there who know EXACTLY how we feel and what we have to contend with. The wealth of information shared is invaluable too - get precious little from the proffessionals in my experience.

Hope your holiday is going well Chrisy and your having some relief, let me know how it's gone when you get back, thinking of you Xx

Chrisy, that husband of yours is a prince! Enjoy.

Glad you had a nice holiday....

Judy

Hi Chrissy,

SO glad you had such a good time and you didn't let this hateful condition spoil your hols.

I'm a 'sprayer' or was until very recently where I have really concentrated on rubbing the Dermavate into the skin. Now it is greatly improved. If only I'd found this site early I may still have labia minors and a clitoris who knows but I'm fighting hard to keep the urethra from getting covered. The consultant noticed the urethra was affected and asked me if its was causing problems said to let him no straight away if I start having difficulties . I guess it will be surgery then. If that happens ill be asking to get all my bits back too not just the urethra though obviously that's essential. I've found washing after every wee, rubbing in the cream for 90 seconds has definitely strengthened the skin and skin is losing the whiteness and more healthy pink colour. If only I'd been told this by the specialists ! GRRRRRR. Let us know how you get on Chrissy xx

I am glad your holiday was a success and the LS wasnt too problematic! It is nice to find something that does work and the squits stayed away!

Hope your urethra returns to normal - on another thread someone was talking about spraying too (sometimes i find i have wet the floor by weeing under the loo seat.....hurrumph...now i have to sit in an undignified angle....sigh!)

Best wishes Sue

Sounds like you and your lovely hubby had a fab time Chrisy!!!!

Talking about dementia the nursing home I work in has many residents with the disease I love them all to bits, I do their hair and they love the one to one time, I get them helping me sweeping up and folding towels.

Let me know how you get on with the GP hope things are okay, my mouths been bothering me got a few ulcers at the moment and that awful taste, been busy this weekend with my older daughter and her little girl planning a birthday party for next week my youngest girl Katie who starts at leeds uni in September studying medicine has been to York for the weekend hope shortly think I better go and get her a meal ready.

Take care

Love karen X

Hi suedm, probably me, the sprinkler. 😊 I used to lean forward to get the flow directed downwards. That's how I knew mine had improved when I no longer had to do that. You couldn't make it up could you ! Xx

Thanks Judy x

Thankyou for the information.  It helps to hear from others with similar symptoms. 

This is such a horrible disease.  I want to share a funny thing that happened on my holiday.  On the first night the air bed didn't seem to fully inflate.  It was one of those deep new ones.  I rolled over and the side of the bed collapsed with me rolling out and landing on the floor pulling sleeping bag and hubby with me.  I was lying on the zip so couldn't get out my side. He couldn't pull me back into bed and we laughed so much.  I got out eventually but by this time the urge to wee was too great and I had an accident.....even though the toilet was only a few feet away.  Embarrassing or what?  We laughed some more while I changed my clothes.  It is good to laugh sometimes.  I know what you mean about undignified positions.  I have to lean forward to completely empty my bladder normally but on this occassion I couldn't stop it.  Typical!!  Thanks. Will update later.

I had some ulcers in my mouth and an awful taste on holiday.  I used corsodyl to rinse with and iglu to treat the ulcers as they told me I don't have enough inflammation to confirm Lp in my mouth.  It fortunately worked.  I started taking zinc and vit c to improve my immune system which seems a bit under par lately.  I definately feel a bit better lately.

You must be a special lady to work with demetia patients.  They need so much patience.  I hope your grand daughters' birthday party goes well.  You have a busy week in store.  I used to love my daughters birthday parties.  Her friends were amazing.  They used to love music and some played instruments.  Lovely times.  I would cook a storm for them.  The lads especially used to love it and there would be some goody bags for them to take home.  They never ever caused me any trouble, and the house always survived the night. Happy days!!

Speak soon.   Chrisy x

So glad your feeling a bit better Chrisy, I'm going to try that mouthwash this taste is unbearable, I'm always a bit wary using mouthwash in case it burns, should be due a check soon with my dentist.

Yes I do love my job it's really busy and I'm knackered when Iv finished but I love to care for them.

Yeah busy week for me Chrisy I'm sure it will keep my mind occupied Xx

Take care

Love Karen

I read someon who had LP used to rinse their mouth for 5 mins with coconut oil, I did try it and is really isn't as nasty as I thought it would be, I have a couple of new mouth ulcers and will have a rinse after bathing!

Oh poor you...and your husband! At least you didn't wet the carpet!

hope you got back to sleep after blowing up your bed!

We did thanks. 

Just thought Karen.  Corsodyl can cause plaque to slightly blacken.  When I am using it i will often go to my dentist after to get a scale and polish to whiten my teeth up.  It doubles as a check for my lichen planus.  I am not saying it is bad and using smokers toothpaste also works to whiten the teeth again.  I find the non minty version is less upsetting on my mouth. (The original one that goes pink)

Aww thanks for thinking of me Chrisy I will try both see what happens. I'm quite down at the moment working long hours making me really tired then these health problems on top of it, also looks like I'm having to go back to court a third time doesn't look like my ex is wanting to give me half his pension, Iv just about had enough my son in law is now dealing with the solicitor for me it's all getting to much feel like getting on a plane on my own and going somewhere for a complete rest feels like I never had that week in Rhodes now.

How are you Chrisy hope things are improving for you really good to hear from you tonight Xx

Hi Chrisy

Hope your well... Can't believe we're at the end of jan already now got all my girls birthdays!!!! More expense, can't remember the name of the mouthwash you recommended to me some time back, it's so annoying when i can't eat food I like, I use to enjoy a curry and spicy foods but can't touch them these days otherwise my mouth burns like mad, are you the same Chrisy with these foods.

You take care

Karen Xx

Hi Karen,

Yes it does affect me. I use Gengigel which is about 8 pounds a bottle but so worth it. Most pharmacists sell it. Read the inform a tion on it.

I keep hitting the reply button by mistake. Yes expensive time birthdays. I come from a large family as does my husband. All year it is hard to remember them all. I hope you are well. Take care Chris x

Thankyou chris for your quick response I'm on it today!!!! There's a chemist just round the corner from me, hah your technigy is just like mine.....although I am learning, never to late, have a lovely day

Take care

Karen Xx