Diagnosed with LS 2 days ago. So afraid. So depressed. Any info is greatly appreciated.
Posted , 18 users are following.
I have had excellent vaginal health up until a month ago. What started as a suspected Yeast infection has ended in a diagnosis of LS & Vaginal Atrophy. I am a 3 yrs post complete (minus cervix ) Hysterectomy due to complications from Colon surgery, 40 yro, happily married, healthy sex life, Woman. I have been very "willy-nilly" about taking my estrogen and assume thats at most to blame for the atrophy but the diagnosis of LS has left me utterly floored. It seems to be very early and mild but the horror stories and photos over the internet are so disheartening; I feel absolutely doomed, forever. I feel as if my Womanhood is gone and that my Husband will lose interest in a Woman who is unable to be intimate even though he promises that isnt the case.
I am consumed with thoughts of it, day and night . So many questions.... So many fears....
One of the symptoms I've been having this past month is an overwhelming amount of pressure in my Lady Parts. Can anyone tell me if this is normal of LS? Or possibly the Atrophy? I started steroid cream and estrogen cream ( and changed over to a patch so i won't forget ) and am Praying something gives at some point. Can anyone please tell me the normal symptoms of LS (and atrophy if anyone is familiar)? I appreciate any feedback and any responses at all. I feel so alone and so utterly useless It feels as though my GYN handed me a Life sentence, without Parole. Thank you all, in advance
0 likes, 102 replies
seginns Ifeellostnow
Posted
For most people, it gets better with treatment. It took me about a year of trial and error before I started to feel largely normal but for some it just takes a few weeks. In addition to this group, there is a Facebook support group, Lichen Sclerosus, A 5 Star Support Group, that i found especially helpful in figuring out what to do to help myself in addition to the steroid ointment my doctor prescribed.
The pressure you feel down there happened to me, too. It was one of my first symptoms.
Ifeellostnow seginns
Posted
Thank you. My niece actually suggested that Facebook support Group but I don't want to join using my my name. I don't know why I feel such a need to be hush hush about this diagnosis but I only feel comfortable sharing it with a very select few.
My pressure feels so intense it seems like it couldn't possibly be related. You are the first besides myself on any forum, or any informational outlet I have seen mention pressure Thank you so much for confirming.
SnappyCat Ifeellostnow
Posted
The FB group is private...while you use your name, so does everyone else...it doesn't show on your public feed. I'm in it too.
Guest Ifeellostnow
Posted
Dear I feel Lost,
I understand how you feel. I feel the same. Friends have walked away after30 years. Remember, nothing on Facebook is private no matter what they tell you. Don't know about this one.
Take what control you have. Try the baking soda or borax sitz baths or just let it run over you after toileting. Have you looked at it?
Are you in US or elsewhere?
biscuit
Ifeellostnow Guest
Posted
I am in the US, yes. I'm not interested in joining the Facebook group. It is beautiful to me , the group exists, but, all of my family and friends are there and I would rather just stay faceless.
I am going to order a Sitz bath off amazon, and a rinsing bottle for after toilet?
What exactly am I using for Borax? Like, the laundry soap? Sorry if that is a stupid question...
And just regular old Arm & Hammer?
Thank you so much for the quick reply and advice
Ifeellostnow Guest
Posted
Also, I am sorry you feel the same as me. I wouldn't wish how I'm feeling on anyone. Losing friends is so horrible. I don't want to lose anyone, especially my husband of 23 yrs.
mai22099 Ifeellostnow
Posted
just wanted to tell you that you are far from alone, im 17 and have had LS for my whole life and there are hard times but you can live with it, my advice would be to try everything suggested to you in order to find what helps you best. am really sorry you are feeling so depressed after the diagnosis
Ifeellostnow mai22099
Posted
Thank you for replying and I absolutely cannot fathom having been diagnosed from such a young age. You are a very strong Individual.
hannah19230 Ifeellostnow
Posted
I feel for you so much. I go through the same thoughts almost daily. I'm 32, single and feel like I'll never be in a relationship again, womanhood completely stripped away. I'm trying to be more positive as i don't have a 100% diagnosis yet, but that seems really difficult to nail down as well.
What did they see or do to give you that diagnosis?
We are here for you!!!!!
Ifeellostnow hannah19230
Posted
I am going to ask my GYN for a biopsy. Though the thought of a sample skin being taken from down there does not sound fun, I'd rather know, 100% than to treat something that could be misdiagnosed. I am also planning to ask for a referral to a Vulvular (sp) dermatologist . Are you have a biopsy?
Aona Ifeellostnow
Posted
I had a biopsy on Monday. I have had lichen's for over a year. I was first diagnosed with ano-genital acanthosis niricgans. This has turned all outer genital areas black, and now on top of that the white patches and irritation from the Lichen's. The worst thing about the biopsy was the shot for numbing. The punch biopsy did not cause any pain. I get overwhelmed having both of these diagnoses. I told my doctor I feel as if she should be wearing a Haz-Mat suit.
Ifeellostnow
Posted
Meant to say, having* sorry. Typos are many for me, right now.
hannah19230 Ifeellostnow
Posted
Yes, even though the "negative" might not be accurate, if its positive, hopefully it does bring some peace of mind within the devastation - I just have gone through so much the last 2 years I need to know what it is. I'm going to have the biopsy done on Aug 8 😦
Ifeellostnow hannah19230
Posted
My obvious "go-to" is to say I hope it is negative. However, in the very least, I pray you get answers. I feel like there is someone, somewhere, cursing me. I have been a month in and I'm so over this, I cannot fathom 2 yrs, unanswered. Have you been receiving treatment for LS even without a definitive diagnosis? Or just waiting it out? At first I did not realize how to reply so I am not sure if you saw my deeper explanation in conjunction to your earlier question of how I got diagnosed, below all the comments.
Ifeellostnow Aona
Posted
I am so, very sorry. I never once considered any sort of disease or condition of the genitals before this, besides an STD or Cancer. Now, here... seeing and knowing all these things exist, it is almost too much to bare. It is traumatizing. I wish I had something encouraging to say in reply, but, I think the only thing I know TO say is, hi, I'm here too.... 😦
Ifeellostnow
Posted
I mean to say , never was aware they existed. Considered was a bad choice of phrasing.
hannah19230 Ifeellostnow
Posted
Hi! yes, I get lost on how to reply sometimes in here too - I'll look for that post!
I've been on Mometasone and it doesn't seem to help, so they are hesitant to give me the stronger one, Clob, which seems to help everyone else. I'm gonna circle back with her on that when I'm there on the 8th too.