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Need advice re symptoms Need advice re symptoms

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  #1  
Unread 10-17-2021, 10:55 AM
Need advice re symptoms

I know that this is a long post, but I desperately need advice.
I thought that it would be best to explain this at one time.
I have been so miserable and have nobody to talk to about it.
Here goes:
This all seemed to start when my gyn dr lowered my estrogen patches from .05 to .0375 to .025.
He even admitted that the .025 is practically nothing when I started having hot/ cold flashes, brain fog and couldnít sleep.
Thank God, thatís all better since my dose was upped.
He had lowered it because I had breast soreness that he never told me was not serious, but just a nuisance.
My mammograms are always ok.
My trouble started out that I also got severe itching and burning in my vaginal and anal areas.
I couldnít stand the burning, so I called my dr on a weekend.
That was two months ago.
The dr on call for my gyn dr who was on vacation, said it sounded like a yeast infection.
I tried what she ordered over the phone and it didnít work.
She even had me try cortisone 10 that burned like fire!
Finally, she said I should be seen, so I saw a PA in the office who said it was vaginal atrophy and to use estrogen cream.
I didnít know how long it would take to help and the burning was driving me nuts.
So, I went to see the dr who ordered the yeast inf medicine to start with.
She looked at me and said my architecture down there was affected, that she saw a white spot, and wanted to do a biopsy.
I said no, so she took cultures and a urine test which all came out negative.
She even tested a lesion for herpes, negative too.
(I have a lesion thatís healing, but I think itís from previous itching)
So, she told me to use clobetasol, a strong steroid for lichen sclerosis.
Then after I asked if I could try the estrogen cream, she said I could use either one.
But, she wanted me to use the steroid for a month, then regularly as a maintenance dose.
So, I tried the steroid, but the burning was still unbearable.
So, I decided since those other two providers were in the same practice, and I was beyond miserable, that I would go for another opinion somewhere else.
I saw another PA who specializes in womenís issues.
She said it didnít look like lichen sclerosis, but like vaginal atrophy.
She upped my estradiol patches to .05 and told me to use the estrogen cream.
Iíve seen her twice and she said she doesnít think itís lichen sclerosis.
Again, the burning was bad and early on I had made an appt with my regular gyn when he would be back.
I kept the appt and went to see him.
He saw the lesion which was still pretty raw, and said he saw some skin thickening and a white spot.
He said to use the clobetasol for a month and to come back after.
He said if itís not better, that he might have to do two biopsies.
I asked if it was for cancer and he said yes.
I asked how itís treated if it is, and he said they can cut it out!
So, I used the clobetasol steroid for two weeks.
My burning is worse.
I texted him and told him.
He said stop the clobetasol, after two weeks it can thin your skin!!!
He told me to use it for a month to start with!
So anyway, Iím back on estrogen vaginal cream for a couple days now.
I still have burning, but I donít know if atrophy is my problem or something else.
So, two PAs say vaginal atrophy and want me on estrogen cream, two drs say maybe precancerous lichen sclerosis.
Meanwhile, Iíve been miserable for two months, and up at night researching vulvular cancer, lichen sclerosis, etc
I never meant to see all of these providers, but after I saw the drs and they think it could be lichen sclerosis, Iím totally messed up on what to do.
I really donít want a biopsy and if I knew for sure that it was atrophy and could take awhile to get better, Iíd be ok.
So, my choices at this point are to continue with the estrogen cream or try to see a different dr.
What would you do?
I only have you to ask, and youíve all been so supportive.

Thank you!
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  #2  
Unread 10-17-2021, 07:21 PM
Need advice re symptoms

  Quote:
Originally Posted by mj12345 View Post
I know that this is a long post, but I desperately need advice.
I thought that it would be best to explain this at one time.
I have been so miserable and have nobody to talk to about it.
Here goes:
This all seemed to start when my gyn dr lowered my estrogen patches from .05 to .0375 to .025.
He even admitted that the .025 is practically nothing when I started having hot/ cold flashes, brain fog and couldnít sleep.
Thank God, thatís all better since my dose was upped.
He had lowered it because I had breast soreness that he never told me was not serious, but just a nuisance.
My mammograms are always ok.
My trouble started out that I also got severe itching and burning in my vaginal and anal areas.
I couldnít stand the burning, so I called my dr on a weekend.
That was two months ago.
The dr on call for my gyn dr who was on vacation, said it sounded like a yeast infection.
I tried what she ordered over the phone and it didnít work.
She even had me try cortisone 10 that burned like fire!
Finally, she said I should be seen, so I saw a PA in the office who said it was vaginal atrophy and to use estrogen cream.
I didnít know how long it would take to help and the burning was driving me nuts.
So, I went to see the dr who ordered the yeast inf medicine to start with.
She looked at me and said my architecture down there was affected, that she saw a white spot, and wanted to do a biopsy.
I said no, so she took cultures and a urine test which all came out negative.
She even tested a lesion for herpes, negative too.
(I have a lesion thatís healing, but I think itís from previous itching)
So, she told me to use clobetasol, a strong steroid for lichen sclerosis.
Then after I asked if I could try the estrogen cream, she said I could use either one.
But, she wanted me to use the steroid for a month, then regularly as a maintenance dose.
So, I tried the steroid, but the burning was still unbearable.
So, I decided since those other two providers were in the same practice, and I was beyond miserable, that I would go for another opinion somewhere else.
I saw another PA who specializes in womenís issues.
She said it didnít look like lichen sclerosis, but like vaginal atrophy.
She upped my estradiol patches to .05 and told me to use the estrogen cream.
Iíve seen her twice and she said she doesnít think itís lichen sclerosis.
Again, the burning was bad and early on I had made an appt with my regular gyn when he would be back.
I kept the appt and went to see him.
He saw the lesion which was still pretty raw, and said he saw some skin thickening and a white spot.
He said to use the clobetasol for a month and to come back after.
He said if itís not better, that he might have to do two biopsies.
I asked if it was for cancer and he said yes.
I asked how itís treated if it is, and he said they can cut it out!
So, I used the clobetasol steroid for two weeks.
My burning is worse.
I texted him and told him.
He said stop the clobetasol, after two weeks it can thin your skin!!!
He told me to use it for a month to start with!
So anyway, Iím back on estrogen vaginal cream for a couple days now.
I still have burning, but I donít know if atrophy is my problem or something else.
So, two PAs say vaginal atrophy and want me on estrogen cream, two drs say maybe precancerous lichen sclerosis.
Meanwhile, Iíve been miserable for two months, and up at night researching vulvular cancer, lichen sclerosis, etc
I never meant to see all of these providers, but after I saw the drs and they think it could be lichen sclerosis, Iím totally messed up on what to do.
I really donít want a biopsy and if I knew for sure that it was atrophy and could take awhile to get better, Iíd be ok.
So, my choices at this point are to continue with the estrogen cream or try to see a different dr.
What would you do?
I only have you to ask, and youíve all been so supportive.

Thank you!
I would do a process of elimination. Use the higher dose of the Esteogen cream but give it time ..sounds like you are in a catch 22.. the dryness is causing the itching and the itching is causing inflammation. Don't use so many things at once because you won't be able to tell which one is causing inflammation. See what happens with just the Estrogen cream.. just cortisone creams are very irritating.. maybe you just need old fashioned antibiotic cream , it's more soothing.
  #3  
Unread 10-25-2021, 09:44 AM
Need advice re symptoms

I have lichen sclerosis and have some areas that turn white. The itching wakes me up at night when itís at its worst. I use clobetasol and it helped tremendously, but you are right about it thinning your skin - howeverÖ..that doesnít happen if you arenít overusing it. I did not know that you are only supposed to use literally a pea-sized amount and spread it very thin. I was using more than that at first and It absolutely made things worse. Just food for thought in case your dr also didnít tell you to use such a small amount. I tried estrogen cream too and it didnít help at all. Itís been months now but I no longer have to use the clobetasol regularly, just for a few nights whenever I feel like itís flaring up again. I have another autoimmune disease (Hashimotoís) and my lichen flare ups coincide with my Hashiís flare ups. It could be a timing coincidence with the clobetasol use but when I started low dose naltrexone for my Hashimotoís, the lichen got noticeably better.
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  #4  
Unread 11-16-2021, 02:37 PM
Need advice re symptoms

I am currently trying to treat vaginal atrophy. Iíve been told the estrogen cream can burn initially because it is activating the estrogen receptors. I donít know about the lichen sclerosis. Can you read up on what it looks like and keep a log of your symptoms (eg white spots) daily so you have more information to give the next doctor?
  #5  
Unread 11-18-2021, 09:30 PM
Need advice re symptoms

I had severe debilitating vaginal pain and itching several years ago. I went from doctor to doctor with no results. It was so bad I was in tears. I took to freezing some tougher and inserting it via an applicator to try and get some relief, I finally ended up at a gyn office where he was shocked to see how irritated the tissues were making the exam extremely painful, He took cultures and called to tell me the yeast was off the charts. He put me in oral medication as well as a prescription vaginal anti yeast for over a month. It took a long time but finally I started to get some relief. He also prescribed a higher amount of estrogen to help.
  #6  
Unread 11-30-2021, 01:25 AM
Re: Need advice re symptoms

I'd do what Illuma said. Do a process of elimination. If you have atrophy you have to use a lot at first and then stay on a maintenance dose to keep it healed. If you have atrophy and just put a little dab here and there it isn't gonna do anything. Rub it all around the clitoral area and down even towards your anus. Plus put it inside. I had atrophy and it itched and burned and itched and itched until I was literally panicking. When I first put the estradiol cream on there OH MY GOSH it itched even worseeeee. It's from the healing process. It eventually does go away when you get it healed up. Of course it could be something else such as lichen. But to rule everything out I'd really rub it in good all around the outside too. When I first used the cream I only put it inside and I still itched all around my clitoral area. It's horrible! And what's worse is that women have to go through these embarrassing pelvic exams over and over and over to get an answer. Hang in there!
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