"I feel so alone" ~ Living with Penile Lichen Sclerosus

I'm a guy of 41 years old and I was diagnosed with lichen sclerosus about 3 years ago.
It took a long time for the actual diagnosis because I was told it was because I wasn't washing and that it may be an STI. At the time I was in a long term relationship. It caused arguments over cheating but obviously that didn't happen.
The dermatologist was a woman to my relief as I did ask for a female because I don't do well with other males.
There was no sense of dignity at the first appointment. I was told to strip from the waist down, there where 4 women in the room.
After the dermatologist checked my penis she asked for pictures.
One of the nurses started to take pictures of my penis with the foreskin pulled back. They didn't explain why and I started to get upset and started crying.
They stopped and asked if I was OK. I explained why I got upset and I had to sign a form of consent for the pictures to be taken.
I was given an appointment for a biopsy, I asked for it to be female only because of what I previously explained. They were more than happy to oblige. (I was sexually abused and raped by both males and females from the age of 4. I'm scared of males because it was only them that hurt me)
On the day of the biopsy the 2 female staff were really nice and understood why I was so scared. They both explained what was happening every step of the way
My penis was made numb by injection, they checked it was numb then took a biopsy from the corona and put stitches in.
They were both very professional and my dignity was taken into consideration.
After a week the stitches were removed and again my dignity was considered as there was a young female trainee there, she was asked to leave while the stitches were removed.
At the appointment I was told it was LS and it was explained to me in detail which I was grateful of since the last appointment there was so upsetting.
Over the past year my LS has gotten worse. I suffer from erectile dysfunction due to my mental health and testicular pain caused by nerve damage from an operation to remove a varicocele at the age of 19. Getting an erection is painful not just in my testicles but now in my penis because the foreskin has fused to the corona to the point you can't see the corona or ridge etc.
If I try to have sex I just bleed as it splits.
Due to my sexual problems, my mental health and a recent diagnosis of autism (no learning disabilities) my partner of 17 years split with me and had been cheating on me due to my problems. It hit hard and I ended up in a mental health hospital due to being on the wrong side of a bridge. Thankfully I'm still here and I now only live for the sake of my 2 children because they are all I have left in life.
Lately my LS is getting a lot worse and it hurts to have a wee. I have difficulty anyway and have to sit down because it takes about 15 mins for me to start to wee because of some of my medication.
The foreskin slits a lot from the glands penis and bleeds heavily. Its very embarrassing when I'm at work and have to ask the female supervisor for a sanitary towel. (She knows my problems but it's still embarrassing). The glands penis is very painful and frequently I get a lot of white spots because of the LS.
I've been waiting for nearly a year for a new appointment with no sign of it coming anytime soon.
Last time the dermatologist said I may need a circumcision and a full glands resurfacing. It's not really what I want but only if I have no other choice. I'm scared to death of an operation due to the last operation I had on my genitals, it went badly wrong and caused the nerve pain which never goes away and sometimes when so bad it feels like I've been kicked in the balls and I can't walk or anything.
I'm also scared because there is a family history of penile cancer. My grandad had penile cancer and had to have his whole penis removed then it spread and his testicles, prostate and bladder which were removed. Sadly it still spread and it took his life. Due to the Lichen sclerosus, the family history of penile cancer and the fact this has caused the break up of my 17 year relationship, I'm living a nightmare where I just can't wake up from and I'm scared to death.
One last thing, I know absolutely nobody male or female who has LS. I've no support, nobody who I can speak to and have understanding. I feel so alone in it all.