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Old 03-14-2013, 05:44 AM   #1
europa
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Join Date: Jan 2012
Posts: 362
The Queen Of Weird Side Effects

I thought long and hard about posting this. But it is a side effect of Tamoxifen and it is very very rare, but God forbid some other lady finds her self with this and feels like she's the only one. And it can be reversed.
I now laugh about this and when I tell the story everyone is in shock and laughs. So here goes.
I had an ear infection some time ago and had to be put on antibiotics for two weeks. My doctor said that at the end of the two weeks to check myself for a possible yeast infection. Now, I have been lucky to have never had a yeast infection. So I didn't know what to "check" for. Anyway, I "checked" the area to see if I would see signs of a yeast infection (I know, but again, I had no idea what a yeast infection would feel like or if it was visual, look like). And when I looked down there I was alarmed...my clitoris was gone. Yup, gone. The skin (hood) and sealed shut. I panicked and called my GYN. But when the reception asked why I wanted to come in...I was speechless. So I started " well, this is probably going to be the weirdest thing you ever heard from a woman but I can't find my clitoris" and of course she replied " excuse me?" so I repeated myself. I continued on "I know I sounds weird but I promise, it was there about a month ago". She about lost it and actually, so did I. The following day I found myself with my feet in stirrups and my doctor (who is my age) going "huh, I haven't seen this in a young person....ever". She asked me when the last time I had relations or used alternative methods to stimulate the area. I looked at her and rolled my eyes. I explained that in fact it had been 2 years. Cancer did a number on my relationship and Tamoxifen makes me feel like a neutered dog. So honestly, I rather do my nails than bother with all that. She said "well, honey, you have to do something because you have an old lady vagina". I felt so annoyed with my little lady, she basically decided that because I have not had sex in years she was going to retired and close up shop..literally. The doctor went on to explain that Tamoxifen lowers estrogen levels and rarely it can lower them to such a level that it can cause this. But that having intercourse can prevent it. The technical term for what happened to me is Lichen sclerosus. Anyway, the treatment is estrogen cream but my Oncologist would not allow that so she had to manually resolve the issue and I was prescribed olive oil and vaseline. As I left the exam room walking like I had just been on a rodeo horse, my doctor jokingly gave me a prescription slip and laughed as she loudly said to me "I want you to have sex twice a week..here's a script for that". Days later she sent me a package in the mail, a toy named The Rabbit was inside. And she texts me every week asking if I have done my homework. I still prefer to do my nails.

But I'm back to normal, someone has "come out" of retirement.

So although rare, Lichen sclerosus can happen if Tamoxifen lowers your estrogen levels and you don't have an active sex life. Just thought I would share.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


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8 YEARS NED
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