Jaclyn, huge thanks for this excellent information. I don't know what I would do without all the information you provide. I am in the UK and have a wonderful dermatologist whom I see 3/4 times a year. I have oestrogen for the vaginal opening only as if I used it internally I had thrush continually. I use one kind of steroid cream weekly on the clitoral area and another three times a week on the labia areas. I have lost my labia and have fusing over the clitoris and have been concerned about my urethra and urination! So this has been timely.....
WOW! That was SO educational. I am 71 and my Lichen Sclerosus was diagnosed well over 10 years, by complete chance, by a medical student in my GP practice, (I live in Ireland). For another 10 years prior to that, neither my GP nor my Gynie ever saw any signs, so couldn't verify what my itching and tearing might have been caused by. My GP and Gynie are both very supportive, but neither have given me the treatment guidance that I have received in the last few days watching your LSSN videos and this incredibly interesting video, in particular. I am in the middle of the worst 'flare' I have ever had and am now realising that it's coinciding with the first anniversary of my best friend of 46 years isn't surprising. Extremely helpful. The importance of my vaginal oestrogen suppositories is such a relief to learn about, as I have been cautious about using them during a flare up. But after this video I feel much more informed and confident. I can not thank you both, Jacqlyn and Dr. Rubin, enough for this session and the work that you are both doing and enthused to do. It feels really exciting and liberating. Am now realy thirsty for more ...............
Thanks so much...so informative and wonderful education from intelligent women! I have signed up for the website and will be looking for Dr. Rubin's website and social media sites.
Thank you so much for helping those of us with LS work towards better health, and talking about the 'women's issues' that really aren't talked about. So appreciated.
Thank you! This was an amazing discussion. I learned a lot that helps explain some of my issues. My labia minora are mostly gone but fused at the top blocking my urethra. My GYN referred me to Dermatology. I discovered that I had both bacterial and fungal infections in my vulva. I also have chemical sensitivity that has caused problems with treatment plans. After months of waiting I finally am getting Patch Testing done to find out what chemicals I am reacting to. Compounded estrogen had to be stopped months ago and I had to reduce my Clobetasol. This discussion definitely helped me understand that I need to find the right medication to get me less miserable.
My primary was so not on board with estrogen therapy because of stroke and heart attack. I was recently diagnosed with lichen and it feels like the Sahara desert down there. Also urinary frequency from pelvic floor dysfunction causing dehydration in the whole body especially vagina. Intuitively I know I need something to plump up the tissue of the vagina.
Think it’s specific training and modern day research on women’s health issues that they know nothing about so gloss over. I love that you both sel advocacy. That’s the only way to promote change. I’m very careful who I choose for care. I have several criteria the practioners I consider must meet. I didn’t seek medical help for 10 years because of the horror stories I encountered regarding what Drs proposed doing to me. In that time I’d say science and care has improved greatly. We still have to educate ourselves and be our own advocates. Thank you both for your encouragement and sharing your knowledge.
That's why we're going to train them. Check out this video and support our cause. th-cam.com/video/uAXeUkV9sag/w-d-xo.html&lc=UgwkJHFCP8whk31ezOF4AaABAg
Thank you for this outstanding information. At age 77 I'm learning more and more about a part of my private body. Urine stream is a problem for me, in that I constantly have to restart to empty. I really don't know to talk to either my GYN or GP about it, I would appreciate guidance in how to talk with a doctor about it.
Thank you so much Dr. Rubin and Jaclyn for sharing this important information with us. I am 59 years old and was diagnosed with LS 6 months ago and was also prescribed Clobetasol along with Estradiol ( estrace) vaginal cream and because of the health scares and labeling warnings on the box I held on using it for months. I saw my new PCP who assured me that it was safe and not systemic hormone so it wouldn't go into my blood stream . She told me I would feel better and would help with atrophy and painful sex. My Gyn doctor prescribed it to use 2x a week. And also assured me to use and that it was safe to use. You are both a God send❤
This is a great video thank you. Jaclyn do you have something research based you have found regarding use of estrogen for LS i could share with my doctor?
Meu grande problema é a atrofia. Não tenho manchas e pouca coceira. Sinto dor e pele atrofiando. Tenho incontinência urinária. Nesse caso os hormônios seria bom para mim?
I don’t know if I have LS! I’ve had itch and discomfort for 4 months. Gynecologist said he doesn’t see any signs. A dermatologist said she maybe did. Both gave me a Rx for steroid but I’m hesitant to start using if it’s not LS. How do I find a qualified specialist?
it won't be easy especially if you live in a smaller town with no big cities around. In my area there aren't specialists that would know much about these issues or that are actually willing to learn more than just taking a pap smear...
So sorry you're having this experience. We're working on the problem. Currently we have a referral based provider directory at lssupportnetwork.org/providers. We're also working on training providers. Check out this video th-cam.com/video/uAXeUkV9sag/w-d-xo.html&lc=UgwkJHFCP8whk31ezOF4AaABAg
Thank you for this.sure taught me a lot.i have fusing of uthreal.wont give me estrogen as I had breast cancer.i am 77 and seems like no interest.i have no stream.i pee every which way.
Jaclyn, huge thanks for this excellent information. I don't know what I would do without all the information you provide. I am in the UK and have a wonderful dermatologist whom I see 3/4 times a year. I have oestrogen for the vaginal opening only as if I used it internally I had thrush continually. I use one kind of steroid cream weekly on the clitoral area and another three times a week on the labia areas. I have lost my labia and have fusing over the clitoris and have been concerned about my urethra and urination! So this has been timely.....
WOW! That was SO educational. I am 71 and my Lichen Sclerosus was diagnosed well over 10 years, by complete chance, by a medical student in my GP practice, (I live in Ireland). For another 10 years prior to that, neither my GP nor my Gynie ever saw any signs, so couldn't verify what my itching and tearing might have been caused by. My GP and Gynie are both very supportive, but neither have given me the treatment guidance that I have received in the last few days watching your LSSN videos and this incredibly interesting video, in particular. I am in the middle of the worst 'flare' I have ever had and am now realising that it's coinciding with the first anniversary of my best friend of 46 years isn't surprising. Extremely helpful. The importance of my vaginal oestrogen suppositories is such a relief to learn about, as I have been cautious about using them during a flare up. But after this video I feel much more informed and confident. I can not thank you both, Jacqlyn and Dr. Rubin, enough for this session and the work that you are both doing and enthused to do. It feels really exciting and liberating. Am now realy thirsty for more ...............
Thank god for these two ladies
Yes they are a god send 🙏 thank you both for discussing these important women issues we appreciate your content👏
Super helpful video Jacqlyn- thank you so much for getting Dr. RUBIN on and asking her all these GREAT QUESTIONS!!!🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼
Thanks so much...so informative and wonderful education from intelligent women! I have signed up for the website and will be looking for Dr. Rubin's website and social media sites.
Thank you so much for helping those of us with LS work towards better health, and talking about the 'women's issues' that really aren't talked about. So appreciated.
Thank you! Check out what we're working on next. th-cam.com/video/uAXeUkV9sag/w-d-xo.html&lc=UgwkJHFCP8whk31ezOF4AaABAg
Thank you! This was an amazing discussion. I learned a lot that helps explain some of my issues. My labia minora are mostly gone but fused at the top blocking my urethra. My GYN referred me to Dermatology. I discovered that I had both bacterial and fungal infections in my vulva. I also have chemical sensitivity that has caused problems with treatment plans. After months of waiting I finally am getting Patch Testing done to find out what chemicals I am reacting to. Compounded estrogen had to be stopped months ago and I had to reduce my Clobetasol. This discussion definitely helped me understand that I need to find the right medication to get me less miserable.
So glad it was helpful. Thank you for sharing your journey.
Thank you so much!!!!! Very helpful information ❤❤
Glad it was helpful!
My doctor is not open minded, and my symptoms are out of control 😢, scary.
I'm 55, and probably single forever because of LS, it's horrible!
Try YES VM vaginal moisturizer, I can have sex again since I started using it.
Please try to find a new doctor. Check out our provider directory lssupportnetwork.org/providers
My primary was so not on board with estrogen therapy because of stroke and heart attack. I was recently diagnosed with lichen and it feels like the Sahara desert down there. Also urinary frequency from pelvic floor dysfunction causing dehydration in the whole body especially vagina. Intuitively I know I need something to plump up the tissue of the vagina.
Sooooo tired of our medical system.....lack of training in so many doctors.
Think it’s specific training and modern day research on women’s health issues that they know nothing about so gloss over. I love that you both sel advocacy. That’s the only way to promote change. I’m very careful who I choose for care. I have several criteria the practioners I consider must meet. I didn’t seek medical help for 10 years because of the horror stories I encountered regarding what Drs proposed doing to me. In that time I’d say science and care has improved greatly. We still have to educate ourselves and be our own advocates. Thank you both for your encouragement and sharing your knowledge.
That's why we're going to train them. Check out this video and support our cause. th-cam.com/video/uAXeUkV9sag/w-d-xo.html&lc=UgwkJHFCP8whk31ezOF4AaABAg
Thank you for this outstanding information. At age 77 I'm learning more and more about a part of my private body. Urine stream is a problem for me, in that I constantly have to restart to empty. I really don't know to talk to either my GYN or GP about it, I would appreciate guidance in how to talk with a doctor about it.
Thank you so much Dr. Rubin and Jaclyn for sharing this important information with us. I am 59 years old and was diagnosed with LS 6 months ago and was also prescribed Clobetasol along with Estradiol ( estrace) vaginal cream and because of the health scares and labeling warnings on the box I held on using it for months. I saw my new PCP who assured me that it was safe and not systemic hormone so it wouldn't go into my blood stream . She told me I would feel better and would help with atrophy and painful sex. My Gyn doctor prescribed it to use 2x a week. And also assured me to use and that it was safe to use. You are both a God send❤
Since ive listened to this podcast, i thought, why not try "wild yam"?! It seems to help so far!
This is a great video thank you. Jaclyn do you have something research based you have found regarding use of estrogen for LS i could share with my doctor?
So then WHY to we have to beg our medical providers for vaginal hormones?
Because they have been led to fear estrogen. Amazing providers like Dr. Rubin are fighting to change that. Check out her channel @drrachealrubin
Meu grande problema é a atrofia. Não tenho manchas e pouca coceira. Sinto dor e pele atrofiando. Tenho incontinência urinária. Nesse caso os hormônios seria bom para mim?
I have estrogen cream but how often am I to use it? Do I put it inside or rub in on the outside or both? I didn’t get instructions really
I don’t know if I have LS! I’ve had itch and discomfort for 4 months. Gynecologist said he doesn’t see any signs. A dermatologist said she maybe did. Both gave me a Rx for steroid but I’m hesitant to start using if it’s not LS. How do I find a qualified specialist?
it won't be easy especially if you live in a smaller town with no big cities around. In my area there aren't specialists that would know much about these issues or that are actually willing to learn more than just taking a pap smear...
So sorry you're having this experience. We're working on the problem. Currently we have a referral based provider directory at lssupportnetwork.org/providers. We're also working on training providers. Check out this video th-cam.com/video/uAXeUkV9sag/w-d-xo.html&lc=UgwkJHFCP8whk31ezOF4AaABAg
Thank you for this.sure taught me a lot.i have fusing of uthreal.wont give me estrogen as I had breast cancer.i am 77 and seems like no interest.i have no stream.i pee every which way.
Topical estrogen is safe for people who've had breast cancer. I would get a second opinion.