Young Lichen Sclerosus Sufferers
Posted , 26 users are following.
I am a female who is 25 years old and has recently been diagnosed with Lichen Sclerosus. I have taken it upon myself to do a lot of research over the last few days and noticed that there is not a whole lot of information about this disease for younger females. I wanted to start a discussion that aimed to help yonger sufferers of this disease, as we often experience different symptons and deal with different issues than post menopausal women.
Lichen Sclerosus is a disease that is very uncommonly found in pre menopausal women. I was seen by many doctors who did not even consider this disease because I was too young. However, after my research I believe that the disease may not be as rare as doctors think in younger females. According to my research and doctor, women my age often experience different symptons because we have different hormone levels. Younger females often do not experience any or as much burning, itching, or soarness. For example, I was only diagnosed because I had a re-occuring yeast infection. However, when I went to the doctor he noticed fusing and did a biopsy. I had no complaints of itching or buringing at all. I did have pain during sex, but to be honest I thought that I just had a smaller frame and never thought that it was a health problem. I didn't even tell the doctor about pain during sex because honestly it's embarrasing. Had it not been for the yeast infection I probably would have never gone to the doctor or thought that there was anything wrong.
I think that it is very important for young females to know that if you suspect that anything is wrong at all or are experiencing pain that you don't think in normal, you should go see a gynocologist (not a regular doctor becuase often they do not know about this disease). Had I not been refered to the gynocologist I could have gone through my whole adult life with this never knowing. And it is very important to catch this disease early so that doctors can monitor for cancer or even other auto immune diseases. My doctor said that because of my age and the fact that this was caught, I am less likely to develop cancer from this diesase.
Some things I found out at the doctor today:
1. This disease will not effect my fertility. I could not find any information online about this disease and fertility, becasue the majority of women diagnosed are post metapausal, but I asked my doctor and that was his answer.
2. This disease is treatable. My doctor said that because of my age the fusing can be reversed over time with aggressive treatment. He said it will be a long road but I will be able to have a normal sex life.
3. This disease can be managed. I choose to look at this diagnosis positively. Although I will have this forever, as long as I monitor the disease and am careful to take the proper medication I will be ok. This disease is not the end of the world and knowing that I have it will help me to prevent other health problems in the future.
4. Please ask your doctor to test you for other auto immune disorders. My doctor would not have had I not asked. This disease can be a sign for other auto immune disorders. Knowing if you have this can improve your quality of life dramatically.
I think that it is important that us young suffers stay positive. I know that I was really freaked out when I first recieved my diagnosis and I was confused reading a lot of the inofrmation out there as a lot of it didn't pretain to me because of my age.
Let me know what you have learned about this disease and what you find works/ doesn't work for you.
6 likes, 29 replies
marg35600 jessica39636
Posted
Thank you for sharing so much information, it is helpful to take it all in. I am 27 and was diagnosed with LS last year- I am sure I have had it for many years but had no idea what I had was abnormal. Last year at visit to a new GYN the Dr. recognized it quickly and after a biopsy she diagnosed me. However, when she diagnosed me it was over the phone and confusing. She gave me the steroid cream to us when I was irritated, but I did not have a good understanding of the disease or my options so for the past year I have not done any treatments.
The past few months I have had extreme discomfort with itching and pain. I was worried it was a yeast infection and went to the doctor because of the pain. I saw a different dr at my office this time and she talked with me about my LS. Now I fully understand what is going on but have so many more questions.
I currently have a crack that is very painful when I pee and I am trying to figure out what I can do to help with the affects. Any insight you all have or good questions I should talk to my doctor about would be helpful. I have read a lot about natural remedies like coconut oil, turmeric, and vitamin D and I am willing to try anything!
I am just starting this journey and feel foolish that I did not pay attention when I was diagnosed and am now dealing with more issues because of it and hope to get it under control.
susan39248 marg35600
Posted
Hi Marg, I know its hard to think straight when you are in pain but you could try peeing in water to dilute it, perhaps in a shower or sitz bath ( sits on top of toilet) or bidet. You could hold something over the sore area so the pee doesn't get on it, wear a plastic glove if you feel the need. For moisturising, try coconut oil or olive oil and as a barrier, if you can get it, aqeous cream is very gentle but make sure you don't use so much stuff that your prescribed medication can't be absorbed. Best wishes.
era41962 jessica39636
Posted
I love you spirit. While I am sorry you are soo young and have to battle with this disease, I am positive you will overcome it with your high awareness. I am not young. I am 45. I have notice that this diseases have few things in common for people that have it:
1. Hormone imbalances
2. Yeast infection j
3. Women afected mostly
There might be more.
I was just self diagnosed and asked for biopsy which came positive. The doctors could not find my problem for a year. I found it myself online searching on the symptoms. What is working for me is a list of things I found on line:
1. I rinse myself after going in toilet with a mixture I have prepeared of hydrogen peroxide 3% with saline. Half of each.
2. I have prepared a bach of 1 tbsp virgin olive oil and 5-10 drops of tea tree oil. Try first how much of burning you can indure. Read about tea tree oil first. This amazing for me.
3. Manuka honey 400+ MGO . I put it on me at bed time.
4. DIET is the biggest thing though. Eat no sugar at all. Follow Paleo diet for a while to see the difference.
Use coconut oil during sex. Do not use toys as they can cause friction and alergies.
Check yourself out on food allergies.
Good luck to you !! A
era41962 jessica39636
Posted
Xx
jen29502 jessica39636
Posted
I get a tightening/coarse feeling just from sitting down or lying around, no idea what’s that from. Such a miserable disease! But oh well.
Who else has been diagnosed with an autoimmune disease? My thyroid is apparently fine but I’m getting pretty worried I could have MS
abigail824 jessica39636
Posted
I’m not necessarily young but I’m not post menopause- I’m 36. After dealing with a yeast infection for 2 months straight, I’ve been going to my Dr almost weekly to try to eradicate this thing. The last few times the yeast has been cleared up but I still itch in my labia area. I’ve given up sugar the past two months, and taking probiotics and we couldn’t understand why the itch wasn’t going away. Finally she noticed some redness and lesions on my labia and thinks it might Be LS. It’s not painful with sex or anything like that that but the itch is just always there. I don’t really understand it but reading all your comments Have made me emotional because i recognize what you’re going through. I did get blood work last week so we will see what that reveals. No biopsy just yet but she did mention doing one. It’s just been an emotional weight- the itch just consumes my daily life and no one seems to understand. Thanks for this thread- it’s been a little comforting knowing I’m not insane.
It’s just weird to me that I’ve never had a yeast infection before august (and it definitely was one) but then the LS showed up after it cleared. But our bodies are weird I guess.
Any other tips on relieving the itch? I have a steroid ointment that soemtimes helps and sometimes doesn’t. But I’ve only been taking it for 3 days so far.
vanessa02573 jessica39636
Posted
Hey Jessica thank you for sharing your story. I have had ls for as long as I can remember. My symptoms were mainly itchiness and since it started so young I had no idea what was wrong. It was shameful for me when I was caught scratching myself by my sister or my mom and I got in trouble. I kept this shameful secret until I couldn't bear it anymore. It wasn't until almost 2 years ago I got diagnosed at the age of 26. It was a relief to know that there was a reason I was different. It's such a shame that this disease isn't more well known. I've had regular pap tests from the age of 16 and no doctor had been able to catch it. Because I was diagnosed so late I will never look "normal" down there. But I am actually getting married in 2 weeks and my future husband loves me for exactly how I am. Being open with doctors and loved ones has helped me normalize this condition and just made it a minor inconvenience during flare ups!
manda.panda jessica39636
Posted
Hi everyone, does anyone follow this thread still? I am 35 years old and got the dreaded LS diagnoses today. Needless to say, it has ruined my day and evening. I've literally been crying all day, because I feel like my life is literally over. I started noticing some white marks in the inside of my elbow and was seen by a dermatologist a couple of weeks ago and she performed a biopsy. Thinking about it now, I've been dealing with itching around my vulva and anus area for the last couple of years. I've dealt with yeast and BV infections for the last couple of years and still itch after treatment was completed. I did an exam earlier this evening and noticed the white patches near my anus. I'm thinking that I need to be seen by a rheumatologist to find out what kind of auto immune disease I have. I feel like I am lost and the dermatologist made it sound like it wasn't a big deal. Everything that I have been reading scares me. I was relieved to see that it's happening to woman around my age. I was told that it happens in older woman and children, but that it usually resolves in children. How can it resolve for adolescents, but the rest of us are screwed? I would love to chat with anyone who follows this thread. A support system is what I need right now. Thanks
haley0506 manda.panda
Posted
i just found this thread today too. i had a biopsy today to see if i have LS but the doctor seems pretty sure it is. i wasnt so scared until now. im nervous. he seen a white patch near my anus too. and it has itched before quite a lot but i didnt think anything of it. but now eveeything is coming into focus
manda.panda haley0506
Posted
Hi there! If you are on Facebook i have joined a support group and have learned so much about it and have received some great advice. If you search Lichen Sclerosus in the search bar it's the one with 8k members. My advice would be to join and educate yourself of everything related to it if it does come back that you do have it.
haley0506 jessica39636
Posted
i just had a biopsy today to see if i have LS I wasnt so worried before like i am. i didnt think of it as a disease or it needs treatment or could lead to cancer. i wanted to see if anyone got a strange huge bruise like thing on their clitoris? mine didnt happen until after my kidney stone surgery. it was like 4 months later this popped up and it was painful. it sometimes felt like someone took their finger and pushed my clitoris upwards. its hard to explain but id love to find someone who has had these same things.
amyroffles jessica39636
Posted
hi jess, i was diagnosed at 18. im 22 soon and so far ive come to terms with my condition, its been a long road and for other young LS suffers i found being open and upfront with my partner about my condition really helped. we try lots of things to help relax the situation so intercourse isnt painful but thats the thing with LS it just sometimes gets incredibly painful no matter how religiously you use the steroid cream or other methods. thats the thing i struggle with the most now, just the knowledge that i will always have LS and will always have to be on top of it or it could get bad. glad to see a thread for other young LS peeps because sometimes it can feel very lonely as no one else my age has even heard of it.