Just been diagnosed with LS can’t cope

Thank you so so much for your reply hun. I’m just going out of my mind tbh. Why has it happened to me??? Need to get out of this negivative thinking and deal with this. It’s just I’ve been seeing a heart specialist as well and have a lot of stress worrying about my conditions. 

Thank you il by some coconut oil and try that. I too wanted to rinse after wee every time. Not sure how to try tbh. It’s so sore using toilet paper but not exactly helping, didn’t want to use a towel due to fabric conditioner etc. 

Also you mentioned cut out sugar. Last few days I’ve cut out everything not even having a cup of T. No biscuits etc. only the loaf of bread which has the odd sugar added.  Did removing sugar help you ? Thank you so much for your help x 

Hi you, sugar is never good for inflammation so... i find it does help. But with this disease that we have we kinda try everything that makes sense you know. Keep your area hydrated...i know it’s greasy my underwear get greased up but i don’t care 🤷???. It’s soothing and coconut oil as a lot of great property.  Did your doctor prescribe a steroid cream? If yes. Put it the way he told you to. But to hydrate i have to say coconut oil is best. I know why you??? I said the same when i was diagnosed.... but now we need to deal with it the best we can and like i said , here you got a bunch of new friends 🤗

Hya, me again. I’ve got the steroid cream this is another one that the demotologst has prescribed privately. Will collect tmw & see how it works. 

Was quite disappointed with my appoint today spent nearly £200 for a 12 min chat anyways fingers crossed things will get better. Odd though she said diet doesn’t make a difference so if up until recently you been eating gluten, dairy, also sugary stuff like cakes chocolate just carry on as no reasearch has proven that food is an issue. 

Since you was diagnosed few years ago. Can I ask if your symptoms have improved or have they sort of stayed the same ? Also have the patches increased in size ? Do you still use your creams? 

Thank so much sorry for asking so many questions. Thanks hun.  

Good morning you, I do use my steroid cream every 2 days and also when i feel a itch. My spots have grown a little bit but nothing freeky. I find my clitoris is covered a bit more then the growing of patches. I know that no reasurch has proven anything about food but in our condition i really think that eating a tat bit better can’t hurt. And I did read that sugar increases inflammation so that is why i try to be concient about food but i do eat what I want at times because it’s also part of living. Don’t get me wrong I cut sugar where I know i can without stressing to much on it. With time in this condition we just try to do our best to slow the evolution in the possibility that we have in our hands , like with food, oils to moisturize, even though doctors don’t tell you to apply oils it’s a good thing to do so....yeah I try to had those little actions in my life and frankly for me it’s not deteriorating... it feels stable so i keep up those little efforts. Exemple sodas are not a big effort for me to cut out,so i do but once in a while i have some. Coffee I take one a day with just a pinch of sugar. I was never a huge fan of sugar... so it’s not to hard. But I do have my chips on weekends lol. Simple things helps sometimes. That’s in my case. Hugs 🤗 

£200 should have bought you a half hour so that is disappointing for you!

The steroid cream is important and use it sparingly and only where you were told to or use a mirror to check. It is hard at first to get it right.

It will get easier though!

 

AFternoon hun, looks like you have every thing under control then with me my emotions are all over the place. Just can’t get my head around it Spouse with time things will improve. 

I’m a big chips lover use to have them regularly with meals etc I’ve cut them out & sugar too hoping things improve. Wish I can get a balance of it all. I’ve had 2 circle patches on either size and now it’s all increasing I’m rubbing the cream in as prescribed hoping things improve. Hope things get better for you too. x 

Hi hun....it’s not all under control trust me I hardly have any sensation of my clitoris. But I hang in there. After almost 5 years i had time to get better psychologically and had time to accept my conditions. Give yourself time and the best thing is at least you can talk about it. It took me so long to find this group so i suffered alone like 4 years. Trust me it’s gonna be ok you will get more at hese with treatments and learn to know what’s good for you. Take time to rest and be good to yourself. We are all the same with this condition your not alone. We are normal and worthy. We just have a condition.  Anytime hun 🤗

Hi hun, yes More awareness needs to be made as I’ve never even heard of this horrid condition. Hope they start soon. 

Borax - have you had any side effects from it? I will give it a go.l thank you. Also is the organic coconut oil better? Holland and Barrett ok to buy from? 

Also have you cut of sugar completely ? Thank you so much hun. 

Hi hun, I don’t eat sweets, will try washing the underwear sepearetly then, only water isn’t good as need to kill the bacteria germs if any are on there specially after applying the creams etc.

have you make any diet changes ? Also had ur condition improved over time ? Thanks hun x   

Hi hun. That’s great news yours improved over the years. I’ve got a consultation today privately got a million & 1 questions to ask. Just wish things could be better - I keep getting flare ups coming on the outside - must be something im eating ive cut everything out Tea, milk, sugar and eat. Complete bland meals in the hope that things improve. I’ve heard cutting gluten products out helps. Have you made any diet changes ? Thanks hun x 

It is auto immune so may have nothing to do with what you are eating. Sugar is empty calories anyway so fruit and vegetables are much better for you.

I will never cut out my cup of tea or my milk. I only have a couple a day anyway.

Yoghurt is very good.

i have stopped those flare ups thankfully. 

All the best with your consultant appointment.

 

Hya hun, thanks for your advice. My heads all over the place so haven’t been concentrating on diet but i need too. 

Thanks hunx