Distressed after another flare up

Hi Joy, Sorry to hear about your flareup. I think they are inevitable. I'm in and out of them and just deal with it with various creams and ointments and clobestol. I try not to look down under every day, but it really is important so that it can be managed. You can still be feminine, there are just a few restrictions from time to time. Go out and buy yourself some pretty lingerie, and know that everyone has some issue, even the guys. It's all a work around. This is truly the oddest issue. Lately I have felt a fever throughout my body, like when you get a chill with a high fever. That's when I know something is brewing, and sure enough, a flare up. I call it a flesh eating disease.Wish I could be more optimistic, but this is something I deal with every day and just get on with my life in between tending to down under. Take care Joy. Hugs.

Hi JOY,

Personally, I don't know if (like you) I will ever accept LS. HOWEVER, WHAT CAN WE DO????

It's a life changing condition both for the person inflicted and for an intimate relationship.

Like you.....I'm totally lost for words how people 'get on with it'. BUT WHAT CHOICE DO WE HAVE?

NONE I RECKON! HANG IN THERE OK. THATS ALL I DO. Thankfully I found this site! WE ARE NOT ALONE.

It is difficult, and we are all struggling with it. Get busy, read a book, take a beach vacation. Salty water does help with LS. It is very important to keep your stress low. We do not know what is behind LS. It could be a virus, a bacteria, some protein dysfunction, estrogen deficit, who knows... For management, try emu oil with a drop of frankincense oil, or ask the doctor for an anti-fungal and a lighter steroid. If you can handle estrogen, it should help, too. Moisturizing daily keeps the tissues plumper. I am now looking into RF and PRP treatment. I know there is an answer. We just need to keep looking for it together!

Hi Joy

I understand how you are feeling, I was like that when I was initially diagnosed. I still feel upset about it but I have come to terms with it better.

It's an awful condition but like with all chronic conditions needs to be managed day to day. I agree about salt water and less stress, my LS was great on holiday, I have returned to work and it's flared up a couple of times already. For me if I have a day sitting down all day, that makes it worse. I am using the creams more now so that helps prevent horrible big flare ups. I try and avoid looking at my vulva as it bears no resemblance to how it used to look. The labia have all fused together now and my clitoris is buried. However I still manage to have good sex with my husband and he doesn't complain. I just have to be careful afterwards as I can get sore.

I think with me I had this condition in my childhood and no-one knew what it was, then when I hit puberty it improved although the skin in my vulval area has always been very fragile and prone to tears. Then after I had my 3rd child I had a really traumatic birth with lots of tears etc and I was referred to gynaecologist who identified that I had the perineum of someone who was in their 70s yet I was late 30s! However even then they couldn't tell me why, just advised me to apply hormone cream, which I rarely did given the fact I had 3 young children to look after and my own health needs took a back seat. it was about 7 years later when I kept getting flare ups and I had been diagnosed incorrectly with genital herpes and then genital eczema, that I diagnosed myself via Google! I eventually had my diagnosis confirmed by another different gynaecologist and was eventually referred to a gyneacolost dermatologist. So I've had a life time of no one really knowing. My diagnosis as awful as it was was a relief at least I had found out what had been wrong all my life! I did cry and I think grieved for a while. I'm ok about it now but do worry about the future. For now I just get on with the day to day.. This site is good as it makes you realise there are other women going through similar difficulties and you are not alone.

Take care xx

hi Joy, I think everyone on this forum knows how you feel. Having LS is so hard to come to terms with and losing our architecture and sensitivity is devastating. All I can say is that it does get easier when you feel you are at least managing it with steroid and creams. Don't look everyday, leave it to weekly or fortnightly. It won't help your sadness. I am completely with you about feeling unfeminine and unattractive but I think its possible to get over that in time.

Just keep up with steroid use and moisturising religiously and look into taking supplements as well. Know that you are doing your best to keep further damage at bay. Good luck - we are all with you.

Hello Joy, Don't give up, I was feelin like you, but like all the other ladies here, life goes on, and it will get better, I started using the Aloe gel with turmeric oil mix that this sweet lady here discovered, her name is Nancy , and then start taking vitamins, shes got a lot of info on what to take and what else to do, that has helped me alot, I also do Borax soaks for 20 min. a day , also don't take in alot of sugars. I hope you feel better soon ...Janie

Hi Joy, its good you have found this site .. there are lots of ladies on here who have suffered for years and have loads of advice to help you manage this damn condition. Its trial and error I'm afraid. I was diagnosed about six months after my husband died. Four years ago now. Who knows if it was stress that brought this on ?? Anyway I have finally found what works for me... we're all different but ... here is my regime for what its worth. I always use coconut oil toilet wipes ... when I shower I use a water based cream down there... never soap ... I use steroid cream once a week .. very little but I make sure its rubbed in well. AND finally vitamin D and zinc capsules ... works for me.

I sympathise with how youre feeling ... fight back Joy. WE're all here for you xx

Hi Joy, I understand how you are feeling, I have felt the same. I was diagnosed almost 2 years ago. It has been not only physically, but mentally difficult to deal with. I am married and it has been hard on us both. My husband is very understanding but I know he finds it hard. Today I am in a lot of pain, dealing with another flare up. I dread looking at the damage this flare up has caused. My husband tries to reassure me that things could be so much worse, and he is right. It is hard to be positive, but thats all we can do. This is the first time I have logged into a site to talk to others going through the same thing. So glad that I have found it.