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GP & urogyn suspect LS - any help about biopsy and condition welcome - feel very isolated at the prospect of both and panicking. Have understanding OH but feel i need an experienced voice of calm.
Thank you so much.
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hi there! had my biopsy a year ago ( no big deal) be thankful you will get the confirmation and treatment! as a result i was treated with clob and all cleared and comfy within 10 weeks. architecture is inntact and sex life is good. ( I
am 57) i have had 2 tiny flares (at the location where i first suspected something wasnt right down there. split at very top of my lips) and 3 days of clob gets rid of it
Thank you so much for taking the time to reply .
Biopsy confirmed LS on Weds - and have to admit not handling it well.
Given a tube of ointment 1 x daily 6 weeks 3 x weekly thereafter and told to use emollient for washing and moisturising vulva . Thats it ! So confused. Have booked appt with GP for 3 weeks to discuss my progress - or not.
Can i ask - did you abstain from sex for those 10 weeks ? Personal question but isn't everything on this site - thank you !
i'm 52 - feeling 82.
I think it depends on how you feel. I still had sex, I did feel sore after but within a couple of days felt better again, just go with what you think and feel. I never feel totally normal Im not sure if thats LS or the menapause so if its not causing me too much pain I just go with it
It is a bit of a shock initially but this will fade and the maintenance will become part of your routine...like brushing your teeth. I was diagnosed 7 months ago, have it under control, am very comfortable and just thankful I had a doctor in my life who recognized it.
I did not abstain from sex during the initial treatment and for me within 7 days of treatment sex became pain free. I don't know if that is your story but that was my main symptom. My vaginal opening had narrowed and was inflexible. After a week it had all loosened up and sex became a pleasure again.
I would recommend you not have sex immediately following the application of clob. I have taken to applying it after my shower in the morning after my workout. My doctor recommended that I not apply it after sitting for a long time...
Don't let it make you feel old. This is more common than you think and manageable. The specialist I see says 1 in 22 woman have it...not sure if she meant among menopausal woman but assume that is what she meant. Most women go undiagnosed...
Good luck and stay calm
Sarah, don't fret. I'm kind if sensing that half the battle with this is to catch it early and learn a) about foods to avoid and b) what kinds of treatments need to become part of your routine.
my biggest problem is finding a tiny jar that i can use to carry vaseline in my purse...that and how to squirt the mustard bottle full of baking soda up at my LS Area while not dunking it in the toilet!!!
were it not for this group, it would be very isolating...but these folks seem to be there when you need them!!!
Thank you for your help - it really helps to get the voice of experience, even though it seems its a very personal, trial & error journey.
Best wishes for your journey !
Thank you for your advice - its invaluable.
I was very down, your reply has cleared the mist somewhat, i still get moments of panic, mainly when i wake up either in the night ( i try and read to take my mind off it) or first thing in the morning ( then i do a mindful app on my phone to try and re focus and be positive )
I had dryness attributed to menopause, prescribed vagifem - tried once and had a horrible reaction, then a patch of soreness near entrance causing rubbing discomfort which seems to be responding slowly to ointment and getting smaller (day 5) - i couldnt start any treatment until biopsy results as they weren't sure so have been uncomfortable for a few months - which has got me down. Penetration has been put on hold just until things settle down - hopefully not too long now.
Advised to do steroid at night - whats the reasoning behind not doing after sitting down for a period of time ? I'm sure its a good reason.
Thank you for your time - hope you're well.
Thank you - ditched alcohol, sugar and reduced caffeine a few months ago before i had any idea /knowledge of LS just to reduce Menopause symptoms which has worked in that department and resulted in some weight loss.
Some articles suggest a low oxilate diet - do you have any ideas on that.
It eliminates a lot of foods ive been using to get over the absence of sugar such as nuts. But also don't want LS to completely take over every aspect of life and become obsessed.
Hope you're well.
Sarah, after my diagnosis and after reading this site, i ditched sugar and most dairy. Then, in early april, i baked a cake for Dad's birthday. i had a little cake 3 days in a row..boom...felt the telltale scratchiness. stopped cold. after about 4 days, back to normal. def something to the sugar thing.
i also do "mini-fast"...16 hrs between dinner and next food. i do this for general health, but i think it helps with the LS.
one thing...when you do the vaseline/ oil, be sure to get not only the site of any lesions, but up into the vag and anal opening. this keeps the tissues soft and pliable. everything works better.
deep breath...once this gets under control, it seems manageable
Will try all that - thanks !
I didn't ask why...but later thought about it and think the most likely reason is sitting may cause the area to have more blood there and using the steroid ointment at that time may make it easier for the steroid to enter the blood stream...just a guess... Though Dr Goldstein, a renowned LS specialist suggests you apply it after a warm soak in the bath tub...so who knows... It just works best for me in the middle of the day.
Many of us have both vaginal atrophy due to menopause along with LS. I am using a compounded estriol vaginal cream a few days a week and that has helped a great deal with dryness. Still need a little lube however... The nice thing about a compounded prescription is it can be made for you and any sensitivities you may have. Most main stream doctors prescribe estradiol--either vagifem or the vaginal cream. Estriol is the weaker estrogen and from what I read the best for vaginal tissue. It is commonly prescribed everywhere else in the world except here and Canada. If you are interested, look into it. There is a lot out there to read and many medical practitioners recommend it over estradiol.
Both of these conditions produce similar signs and symptoms. I self diagnosed and self treated for VA for a few years and tried everything in the book only to find out it was LS that was causing the majority of my symptoms. I never had the classic itching... Once I started the clob my main symptom disappeared.
I feel I now have a good handle on it with both the estriol and clob. I use emuaid a few times a day and I also rinse with a bottle after I urinate and apply olive oil afterwards. Sounds like a hassle but it really is no bother...
Hope all is well and things are getting better.
Thank you so much for your helpful advice - i had the same feeling that VA wasn't the main culprit ( we'll see when things have calmed down - but useful advice about estriol) which caused me to push for further investigation and here we are ............
I now have an assortment of lotions and potions to test my responses to,
a more positive mind set and a feeling that it will get better.
After 5 days the patch is getting smaller and everything looks a much better colour - fingers crossed.
This community has been amazing.
Rubydee - since you didn't have the itching (I don't either) was the urinary urge your main symptom?
Also, did you have the LS biopsy?
I dropped the clob for olive oil and it seems ok. I was on clob for 3 weeks 2x day.
I'm pretty sure I have LS (I know I have VA) as I used to get that pounding aching in my clitoris area - when I have my legs crossed or was wearing running tights.
My PA is 99% sure I have it, too, but I've been avoiding the biopsy.
My primary symptom was painful sex which I attributed to VA for a few years. I tried many things over those years and a few months before I was diagnosed sex became increasingly difficult. After being diagnosed with a biopsy I came to realize that LS was the reason...my introitus (vaginal entrance) had narrowed and become very inflexible. (My primary gyn informed me that VA does not affect the outside area of the vagina...wish I had known that sooner...)
For a few months before diagnosis I also had a round of UTI's...which I again attributed to VA. Now I realize it could have been due to the LS, VA or both. Have been UTI free since starting estriol vaginal cream and treating the LS with clob.
I would recommend having a biopsy done. I believe you would have to stay off of the clob for a certain amount of time since clob will affect the biopsy results.