I've been here, before
Posted , 12 users are following.
I realized after being diagnosed with L.S. that besides my doctor prescribing the clob, no other maintenance was discussed and frankly I was too upset to think. In addition to this forum, I also joined a FB group, though not sure how long I will stay. Reading these posts and on FB are more overwhelming than helpful. Maybe because, I'm struggling to accept this condition. I really looked at my vaginal area, last night, I mean really looked. Besides the discoloration (I do not have white patches, the melatonin is gone, similar to what happened with Michael Jackson) my genitalia looked Ok, until I realized that I could no longer see my clitoris. It apparently has fused into my vaginal? My doctor said nothing, or maybe she just didn't know or thought that was just the way it is. This diagnosis has been difficult for me, but I know I am not alone, but I feel alone. I have other medical issues, that I'm dealing with and have found myself ignoring, because of this recent diagnosis. I know I have to figure out how to deal with this, but just not today.😔
0 likes, 11 replies
ann82436 angela0180
Posted
Hello Angela, I'm so sorry to hear of your diagnosis and difficulties. It must have been such a shock - i know that I am still crying at times following my diagnosis 10 days ago.
It's early days for me in terms of diagnosis (significant loss of viginal architecture - don't you just love medical terminology - it's so caring...). Much anguish followed by a visit to my GP who was very understanding..she explained that the clitoris is a large organ, and just because it appears smaller or not visible does not mean it isn't there, so it isn't lost. I've been referred to a vulval pain clinic as well as to a specialist dermatologist, so hopefully they can help. If you haven't yet been referred to these then I'd suggest that you ask to be referred.
Other than that, I just send much love and best wishes.
People on these forums have more experience then I do, so try not to find the information frightening - easier said than done....but do ask questions - people here are very friendly. xxx Annie
angela0180 ann82436
Posted
Thank you Annie for your kind words. I found out how amazing these women are in this forum, after my first post. I guess I'm just feeling sorry for myself and cannot grasp, how I didn't know anything before this diagnosis. Unlike some woman on here, I had no inkling that there was a problem until a little over two weeks. I thought I had a yeast infection, but the itching was minor. Once I looked at my vagina, I almost fell out if my chair. when I saw the color was gone. Since, I have been celibate for the past 3 years and a half, I had no reason to actually look down there. Again, Thank you for your kind words,
Angela
HesterBell angela0180
Posted
Hello Angela. I too find it unbelievable that I can have a condition that can so change my anatomy and know nothing about it. I was diagnosed this week with minimal symptoms (also no itching) and a large degree of fusing. Who knew this was even possible? I am 9 years post menopause so feel lack of hormones must play a big, silent and insidious part in the process. I don't know what to make of it but am hoping steroid cream and oestrogen cream will improve the skin condition and pale colour.
Kind regards
Hester
chicks angela0180
Posted
Take care
Jan
viv15674 angela0180
Posted
Angela, do not lose hope. I've been living with this condition for at least 20 years even though I was only diagnosed around 10 years ago. The treatment works if you use it diligently and correctly. It may look bad now, but you will see improvement over time. With appropriate use of the clobetasol, my vulva was restored to normal and my symptoms are well managed. I also use baking soda baths for the occasional flare up and coconut oil or emu oil after the shower to keep the skin supple and prevent breaking (the clob can thin the skin and make it a bit more fragile).
I have three children and enjoy a healthy sex life with my husband. I, too, have some other health issues and find that if I ignore any one of them, all of the others get worse, so I just manage each of them with what works and try to take a whole health approach rather than prioritize my health issues. Stress makes any one of them worse, including the LS, so find something that helps you to minimize stress as soon as possible and make a point to work it into your regular routine.
I wish you all the best! You are not alone!
angela0180 viv15674
Posted
Thank you Viv, you give me hope💓
viv15674 angela0180
Posted
You're very welcome!
dani8979 angela0180
Posted
I am in the same position as you, just found out I have LS. I am devastated, simply can not come to terms with having this complex disease, I am working on it, trying to gather as much info as I can. I have hypothyroidism for sometime and struggle with its many symptoms, in a way I am not surprised for developing LS.
You are not alone, so many women seem to have it, some quite young. It is the scaring and damage done to the genitalia which is hard to accept....but we must find the strength to cope and manage it best we can.
It is important to learn how to apply the ointment, sit in a warm bath for at least 20-30 min.so the pores of the skin are open and after the bath massage the ointment into the skin for 90 sec. all around your genitalia and anus. The ointment needs to go deep into your skin not remain on the surface. Best to see specialists....dermatologist, gynecologist and an endocrinologist as well, it is after all an autoimmune disease.
I wish you well, keep reading the posts and let us all know how you are doing.
angela0180 dani8979
Posted
Thank you Dani💓I'm doing the best that I can to cope. Soaking in tghe tub is not really an option. I need to have my tub relaxed or refinished. For now
I only taje showers. I did order a portable bidet from Amazon and it arrived today. It does not fit securely into my toilet seat, so I need to be real careful when using, but my soaking starts tonight. I also use coconut oil as the barrier cream, as well. I received some wonderful feedback in this forum, but part of this journey involves seeing a counselor as well. I have a great support system, but I am so devastated about this diagnosis and I need better coping skills.
viv15674 angela0180
Posted
Angela, go out an buy yourself a plastic dish washing tub. You can fill it with warm water and a bit of baking soda and make your own sitz bath at night. Set it on a folded towel on the bathroom floor or inside the tub and sit in it for about 15 minutes before applying the clobetasol. It's a very easy and cheap alternative to a full bath. Dani is right, the warm water softens your skin and makes the ointment absorb more thoroughly and work better.
dani8979 angela0180
Posted
You can write private messages to me if you wish....
Take care, try to be positive little by little every day....