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europa 03-14-2013 05:44 AM

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.

LeahM 03-14-2013 05:49 AM

Re: The Queen Of Weird Side Effects
 
Oh dear God....why did my husband have to choose today to not work from home....

Debbie L. 03-14-2013 08:02 AM

Re: The Queen Of Weird Side Effects
 
Laughing! You guys are both very funny.

But maybe you're not that rare, Europa. I had this, too, after taking an AI. At least, they called it lichen sclerosis although it was a little different than what you're describing (and at that time, I did have a sex life). Lichen sclerosis made my labia white, itchy, and painful (achy, but not painful to touch). When the PA did the exam, her eyes got big and she said she had NO idea what it was. She had to pull the GYN doc into the room to diagnose it.

But the main reason I'm writing is that the treatment was different for me, and when I google it just now, it seems that my treatment was the usual. I was prescribed a super cortisone-like cream called "Clobetasol". This was many years ago and at first I think I used it twice daily, then much less as things resolved. It still gets achy every few months or so, I resume using the cream for a few days, and it settles down. So if your current treatment regimen doesn't do it, you might ask about Clobetasol or something similar.

I can't believe that your GYN mailed you that part of your therapy! And she follows up on your progress. Amazing, she must be a special person.


Debbie Laxague

'lizbeth 03-14-2013 09:46 AM

Re: The Queen Of Weird Side Effects
 
Oh my! Still laughing . . . that Ob Gyn is a keeper!

jaykay 03-14-2013 10:21 AM

Re: The Queen Of Weird Side Effects
 
Lol - can't believe your gyn sent you a rabbit!

Ellie F 03-14-2013 10:48 AM

Re: The Queen Of Weird Side Effects
 
I love this support group. You ladies are amazing!
Ellie

chekmark 03-14-2013 11:04 AM

Re: The Queen Of Weird Side Effects
 
Ha ha ha, I can't stop laughing. We all needed a good laugh on here. I'm not telling my husband about the script, he'll make me get one.

europa 03-14-2013 03:06 PM

Re: The Queen Of Weird Side Effects
 
Now ask me if I have taken the rabbit out of the box. Nope. Tamoxifen is no joke. I feel no desire. Nothing, zip, zero...nada. Still rather do my nails. I'm thankful I don't have a partner right now because he would be miserable.

JennyB 03-14-2013 09:12 PM

Re: The Queen Of Weird Side Effects
 
Brings a whole new dimension to use it or lose it!!!

I had a few army friends who swore by their 'rabbits' when away from home - kept the smile on the armed forces thats for sure!!

Hope your nails are perfect!?!

IrvineFriend 03-15-2013 02:41 AM

Re: The Queen Of Weird Side Effects
 
Oh come on, at least take it out of the box! You never know, it might bring back some of the those old feelings ... Good story and thank you for sharing!

CoolBreeze 03-17-2013 08:55 PM

Re: The Queen Of Weird Side Effects
 
GREAT post!!!!

:)

Do I want to know what she did to manually fix it? :)

Really, it's funny but it's good information to know. Thanks for posting it.

Jen 03-17-2013 09:26 PM

Re: The Queen Of Weird Side Effects
 
I have heard that the "rabbits"were the "cadillac of vibrators" hopefully she gave you one with a clitoral massager as well as something to insert.

linn65 03-18-2013 05:38 AM

Re: The Queen Of Weird Side Effects
 
Okay, I found myself looking down there, and "it" is still intact!! LOL. Okay, I did have the rabbit but it got thrown away somehow thru my divorce!! Now, I have heard about the "Wand", and heard it was pretty awesome!! :)

I am just wondering would insurance cover this you think?? LOL

On a serious note I take tamox and had herceptin Wednesday. By Friday in the middle of night and Saturday I was drenched in sweat and was chilling. This went on all day and night. I mean my hair, my body was just dripping wet. Last night just a few episodes where the sweating woke me up and then dried myself up.

I think I was a little dehyrated the time I woke up this Monday morning. I have had hot flashes during all of this but it seems the last couple of herceptin's for a couple days the sweating is intense. Does anyone else have that?? Is it Tamox or Herceptin??

LeahM 03-18-2013 05:55 AM

Re: The Queen Of Weird Side Effects
 
Linen the tamox can cause hheat flashes and the H can give you the chills.wonderful combo, isn't it?

LeahM 03-18-2013 05:58 AM

Re: The Queen Of Weird Side Effects
 
Linen?? Stupid autocorrect! I meant Linn.

linn65 03-18-2013 06:32 AM

Re: The Queen Of Weird Side Effects
 
Do you think the Herceptin makes the Hot Flashes worse for a few days in combination with the tamox?? Before when I was getting "Hot Flashes" It seemed it would happen from the neck up, and I would sweat under my wig. I would take my wig off and wipe down my head then it would go away. Now, it is my whole body and it can change within 10 minutes apart. It is crazy!!

Now, since Sunday they have been coming less frequent.

Saturday my ankle joints ached too and of course the tingly feet came back and it all just seems like Herceptin just makes it all worse.

LeahM 03-18-2013 06:38 AM

Re: The Queen Of Weird Side Effects
 
I had hot flashes during chemo but I haven't had any since I started tamox. I've been on it almost 2 months now. The Herceptin makes me chilly for about 24 hrs after infusion and my joints ache too. My left leg has been tingling and numb for a long time now. Can't seem to ffigure out why but I blame the Herceptin. Its all a mystery.

europa 03-18-2013 12:29 PM

Re: The Queen Of Weird Side Effects
 
I am happy to report that I have tried the rabbit. I think it's going to take me a while to get "into" it as I and my little lady have been on sabbatical.

CoolBreeze: The manual separation was very painful. I don't know quite how to describe it without fear that women of you may pass out. But let's just say it was as painful as a man being kicked in the cojones.

chrisy 03-18-2013 02:26 PM

Re: The Queen Of Weird Side Effects
 
Thanks for bringing this up in such a humorous fashion. I'll have to check out the rabbit thi, it is Easter after a all!

One question, what's a vagina? I think I used to know way back but have no idea now!

tricia keegan 03-18-2013 02:31 PM

Re: The Queen Of Weird Side Effects
 
Thanks for posting this and I also prefer to do my nails since my chemo finished and I had an ooph, I'm dashing into the bathroom to check right now but don't have a rabbit...not sure I want one either but may prefer some wine or chocolate!:)


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