Lichen Sclerosus: Any other women dealing with this disease?

I was recently told I have probable LS. I had rectal cancer diagnosis that was treated as anal cancer in November 2019. Chemo and radiation therapy has gotten me cancer free now. The radiation side effects were severe burns that cleared up after about 6 weeks and scarring of my vagina, atrophy in that area, and scarring of my cervix. After treatments for the cancer, I did have itching in the perianal area and thin skin caused bleeding there as well. My first pap smear after all the cancer treatments wasn't until mid 2024, and that is when is was discovered that my cervix was so scarred I needed to go to a gynecologist to get an acceptable pap smear. It was at the gynocology appointment that I brought up my continued itching in the perineum area and newly started itching of my genital area. I was diagnosed with lichen sclerosus by its appearance, and was prescribed colbetasol for the affected area. This cleared up my vulva itching, and helped with the area between my vagina and anus that was much improved but not gone. I have been getting sores that will bleed at times and less intense itching now. At my recent gynocology visit, my doctor did a much biopsy of the perineal area in order to confirm LS, so I am waiting on that. Needed another pap test as last year's test was positive for hpv but not 16 or 18. There are other strains that are high risk but not the highest that 16 and 18 are. Hopefully the pap comes back clean meaning my body cleared it on its own. The cancer I has was hpv related, so my gynecologist decided to do the biopsy to have an accurate diagnosis of my condition and rule out any concerns that it could be cancer. I never dreamed in a million years that I'd be dealing with all these problems in my private area. Its been frustrating, and I'm happy to see there's a support group here for this condition. This is my first post as I just joined the group, and I am looking forward to reading and learning from what you all have been through and posted. Its a hard subject to discuss with friends and family that haven't had these problems.

I was recently told I have probable LS. I had rectal cancer diagnosis that was treated as anal cancer in November 2019. Chemo and radiation therapy has gotten me cancer free now. The radiation side effects were severe burns that cleared up after about 6 weeks and scarring of my vagina, atrophy in that area, and scarring of my cervix. After treatments for the cancer, I did have itching in the perianal area and thin skin caused bleeding there as well. My first pap smear after all the cancer treatments wasn't until mid 2024, and that is when is was discovered that my cervix was so scarred I needed to go to a gynecologist to get an acceptable pap smear. It was at the gynocology appointment that I brought up my continued itching in the perineum area and newly started itching of my genital area. I was diagnosed with lichen sclerosus by its appearance, and was prescribed colbetasol for the affected area. This cleared up my vulva itching, and helped with the area between my vagina and anus that was much improved but not gone. I have been getting sores that will bleed at times and less intense itching now. At my recent gynocology visit, my doctor did a much biopsy of the perineal area in order to confirm LS, so I am waiting on that. Needed another pap test as last year's test was positive for hpv but not 16 or 18. There are other strains that are high risk but not the highest that 16 and 18 are. Hopefully the pap comes back clean meaning my body cleared it on its own. The cancer I has was hpv related, so my gynecologist decided to do the biopsy to have an accurate diagnosis of my condition and rule out any concerns that it could be cancer. I never dreamed in a million years that I'd be dealing with all these problems in my private area. Its been frustrating, and I'm happy to see there's a support group here for this condition. This is my first post as I just joined the group, and I am looking forward to reading and learning from what you all have been through and posted. Its a hard subject to discuss with friends and family that haven't had these problems.

I also wonder if my LS is connected to my January of this year diagnosis of Hashimoto thyroiditis. It seems autioimmune diseases can be connected, and I'm just learning about all of thos. Its a lot to take in at age 57. I had never had all these issues until my cancer diagnosis.

I seem to be collecting autoimmune conditions as well. Multiple autoimmune syndrome is mentioned on the NIH website several times, if you want to read studies into it. Seeing an endo regularly for my thyroid to keep it under control, using Lisepten for my LS, and staying on top of others with my PC is working. Just ask questions about everything and read the side effects. Please don't worry about it. It is what it is, and taking care of your health first will help everything else sort itself out. I eat healthy and learn to say no whenever I'm offered something unhealthy. People do seem to respect my healthy decisions, and I hope it inspires them also to exercise, eat properly, and maintain a positive (and honest) outlook on life.

Thank you for those words of encouragement. I did find out yesterday that my biopsy is positive for LS, and I'm happy to get a definitive diagnosis. Especially happy to hear that persistent lesion is not cancer or precancer. I appreciate this chat group because LS is so new to me. I hadn't ever heard of it until last year in August. I look forward to the helpful insights from this chat.

It's funny how I had been so healthy until my cancer in 2019, and now it seems like it's one thing right after another. I tell you all that the devil isn't going to steal my joy. I'm just going to keep praising the Lord.

Thank you for those words of encouragement. I did find out yesterday that my biopsy is positive for LS, and I'm happy to get a definitive diagnosis. Especially happy to hear that persistent lesion is not cancer or precancer. I appreciate this chat group because LS is so new to me. I hadn't ever heard of it until last year in August. I look forward to the helpful insights from this chat.

It's funny how I had been so healthy until my cancer in 2019, and now it seems like it's one thing right after another. I tell you all that the devil isn't going to steal my joy. I'm just going to keep praising the Lord.

I recently got diaginosised with Lichen Sclerosus by my gyn after
a couple years of many many ongoing UTIs sent to a urgolgoist,
who did test and found I have a very large bladder and have bladder retintion and I used two intermittent catheters per day to help
keep by bladder . I am a 14 yr breast cancer survivor yay !! this year they caught it early in my yearly mamogram, it was small, after a lympetomy, when removing one lymph node under my arm, the surgen said it looked good on the outside, but a week later when I saw him for follow up he said the lymph at the lab was disected and cancer was inside it, so I had a port put in for chemo and did well through those and followed by radiation treatments as well, I have had a few questionable mamograms over these past 14 years but all turned out to be no cancer return. Breast cancer is not in my family history. So here I am 14 yrs later facing this new disease I know no one with, and was glad to find a forum like this to connect with.
I went through almost all the treatment series with using clobetasol the every day 4 weeks, then every other day for 4 weeks but on the going into the every other day, I found I had very smelly urine and a UTI and took the antibotic for it, and as I was taking the antibiotic I went back to clobetasol every day, starting the process over but did 16 days every day, now am on the every other day. There is so much to this mentally and emotionally, I also have been in therapy for childhood and adult DID PTSD for abused neglect, mistreatment since in infant,and last split from emotional abuse was two year ago when I was 65, I have been with a christian therapist for 17 years so far now and with God's help we have met, healed and intigrated 181 split by trama DID parts of myself, I have been truely bless in so many ways, and I know God is going to walk with me through this LC, I say walk through cause I understand there is not cure. I hope there is connect to others with this, I have never been part of a forum before.

I recently got diaginosised with Lichen Sclerosus by my gyn after
a couple years of many many ongoing UTIs sent to a urgolgoist,
who did test and found I have a very large bladder and have bladder retintion and I used two intermittent catheters per day to help
keep by bladder . I am a 14 yr breast cancer survivor yay !! this year they caught it early in my yearly mamogram, it was small, after a lympetomy, when removing one lymph node under my arm, the surgen said it looked good on the outside, but a week later when I saw him for follow up he said the lymph at the lab was disected and cancer was inside it, so I had a port put in for chemo and did well through those and followed by radiation treatments as well, I have had a few questionable mamograms over these past 14 years but all turned out to be no cancer return. Breast cancer is not in my family history. So here I am 14 yrs later facing this new disease I know no one with, and was glad to find a forum like this to connect with.
I went through almost all the treatment series with using clobetasol the every day 4 weeks, then every other day for 4 weeks but on the going into the every other day, I found I had very smelly urine and a UTI and took the antibotic for it, and as I was taking the antibiotic I went back to clobetasol every day, starting the process over but did 16 days every day, now am on the every other day. There is so much to this mentally and emotionally, I also have been in therapy for childhood and adult DID PTSD for abused neglect, mistreatment since in infant,and last split from emotional abuse was two year ago when I was 65, I have been with a christian therapist for 17 years so far now and with God's help we have met, healed and intigrated 181 split by trama DID parts of myself, I have been truely bless in so many ways, and I know God is going to walk with me through this LC, I say walk through cause I understand there is not cure. I hope there is connect to others with this, I have never been part of a forum before.

I recently got diaginosised with Lichen Sclerosus by my gyn after
a couple years of many many ongoing UTIs sent to a urgolgoist,
who did test and found I have a very large bladder and have bladder retintion and I used two intermittent catheters per day to help
keep by bladder . I am a 14 yr breast cancer survivor yay !! this year they caught it early in my yearly mamogram, it was small, after a lympetomy, when removing one lymph node under my arm, the surgen said it looked good on the outside, but a week later when I saw him for follow up he said the lymph at the lab was disected and cancer was inside it, so I had a port put in for chemo and did well through those and followed by radiation treatments as well, I have had a few questionable mamograms over these past 14 years but all turned out to be no cancer return. Breast cancer is not in my family history. So here I am 14 yrs later facing this new disease I know no one with, and was glad to find a forum like this to connect with.
I went through almost all the treatment series with using clobetasol the every day 4 weeks, then every other day for 4 weeks but on the going into the every other day, I found I had very smelly urine and a UTI and took the antibotic for it, and as I was taking the antibiotic I went back to clobetasol every day, starting the process over but did 16 days every day, now am on the every other day. There is so much to this mentally and emotionally, I also have been in therapy for childhood and adult DID PTSD for abused neglect, mistreatment since in infant,and last split from emotional abuse was two year ago when I was 65, I have been with a christian therapist for 17 years so far now and with God's help we have met, healed and intigrated 181 split by trama DID parts of myself, I have been truely bless in so many ways, and I know God is going to walk with me through this LC, I say walk through cause I understand there is not cure. I hope there is connect to others with this, I have never been part of a forum before.