In which I am freaking out

[epphd]

Is there a @ symbol? So I mentioned in a random thread that I've scheduled a hysterectomy. I've got this genetic mutation and I already had cancer, and in the last 18 months I've had 2 uterine biopsies (one abnormal), a D&C following the abnormal one, and now "something" seen in uterus on CT scan that was not there before. Could easily be a polyp and no big woop. But it basically forced the question of should I just be done with the damn parts and my gyn onc said "yeah do it" and my regular onc said "shit yes do it, if I were you I couldn't sleep at night withOUT doing it." Ok, so there's consensus.

So I've been all la dee dah about it because I'm tough and cancer is bad and I get to take estrogen so nbd.

But now I'm worried that I'm going to get brittle and dry and paunchy and basically become a hairy unattractive and sexless old lady.

Can anyone talk me down or direct me to someone who's been through this?  GAH.

[msmerymac]

So you are having a total hysterectomy, including ovaries, because of cancer concerns? Since you'll be taking estrogen, that's what I'm assuming?

[tacosforlife]

1) Hormone replacement therapy has come a long way, and you aren't going to be brittle and dry and paunchy and an unattractive and sexless old lady.

2) Even if your appearance changes, you are still your awesome brilliant, strong, amazing self. You are doing this for your overall health so that you can continue to be there for your son. Your son will not care how your appearance changes. But he will grow up to be an amazing man because he had such a wonderful role model raising him.

3) It's OK to be scared. I'd be scared, too.

4) YOU GOT THIS!

5) I just wanted to put a fifth thing on my list because it looks more complete that way.

[havarti]

My mom had one when I was a kid (so she was maybe in her 40's) and she has an active, full life. I, you know, don't know all the details here because I'm her kid AND I DON'T WANT TO KNOW!!! But she and Dad seem quite happy.

[epphd]

Thanks everyone. I appreciate that Yes I am having ovaries, uterus, tubes and (gulp) even cervix removed. Lynch syndrome increases the risk of ovarian cancer to like 10% (which seems small but OC is damn near impossible detect before it is deadly) and uterine cancer to like 60+%. Since the cervix is technically part of the uterus (which I did not really previously know) it has to go too.

Since I will not have a uterus, and since colon cancer isn't estrogen linked like BC, I can have estrogen. My gyn onc said that's NBD. I'll be asking her about whether a more extensive cocktail (containing progesterone or even testosterone) might be worth trying.

[snarkymalarky]

Have you looked into bioidentical hormone replacement? My friend at work gets hers from a compounding pharmacy and swears by then. She too had an early hysterectomy

[tacosforlife]

DUDE. No cervix means no more pap smears. Which suck ass. So focus on the positive?

[NewOrleans]

Sorry, epphd. No experience but lots of support. <3

[msmerymac]

My mom only had a partial/uterine hysterectomy and the ovaries were left behind, but the total hysterectomy isn't THAT uncommon. I'm sure you'll do great! Do they offer the laser kind for the full procedure? My mom had her's in like 1997 or something, so it was before the laser surgery became a Thing, but supposedly that helps with recovery time. I like how I'm approximately 18 years out of date with any kind of medical advice, here.

[Michelle]

I have no experiences to share that would help. However i just want to share I'm a cheerleader for you doing whatever it is that will give you increased confidence that you will reduce the likelihood of developing future cancer and problems.

And even with my full reproductive system in tact, I'm a hairy sometimes dried up sexless unattractive old lady.

But I'd take on more hair, more dryness, even less sexy time and worse if it decreased my odds of developing cancer to which I'm predisposed.

My heart goes out to you during this difficult decision period. And I hope it's ok that my prayers go up for you too.

[josieposy]

I can tell you that my mom did it several years ago and other than the occasional hot flash she's doing great.

You will do great.

[memenee]

Many hugs to you during this difficult time. I feel confident you will not be dry, brittle or sexless. You got this!

[penguingrrl]

I have no advice to offer, but wanted to send support your way.

[epphd]

Again, thanks for the kind words and stories! Michelle I love prayers, good thoughts, all that stuff - thank you.

I'm not at all worried about the surgery. It's not just not abdominal, it's fucking robotic so that's rad. They pull everything out through the vaginal wall (ETA - I think maybe I'm wrong about this - guess the robotic surgery is through the abdomen). Seeing as I had IVF retrievals 4 times this scares me zero.

So the no cervix/no pap thing - totally true. But I am honestly wondering how the hell my vagina won't fall out? I know that sounds stupid but the anatomy is sort of confusing -the vag ends at the cervix and the uterus sorta holds it all up, ammiright? Is it just like a sleeve in there afterward? Will the deed be as "deed"y as it was before - for me and him? Really it's all about the sexy time. And also I don't want to have to closely watch what I eat, which I can kind of get away with now.

Ahhh lots of questions for my doctor. Thanks again

[dirtyred]

I had a total hysterectomy and can't take HRT.  I am not dry, brittle, or paunchy, or hairy.  I admit that my libido has dropped, but there are things you can do to get yourself in the mood.  I can still orgasm, it just takes a little longer.

[IIOY]

I have no stories to share but wanted to offer virtual hugs and support!

[EloiseWeenie]

I'll be praying for you.

My mom had cervical cancer and went ahead and got a hysterectomy (I can't remember, but I think she still has her ovaries). She was 52. She's doing great, and hasn't complained of any issues to me (except arthritis in her knees).

[aurora]

Thoughts and hugs. I'd be scared, too, so I don't blame you at all but HRT has come a long way.

[Chuppathingy]

Dec 19, 2014 17:43:39 GMT -5 epphd said:

Thanks everyone. I appreciate that Yes I am having ovaries, uterus, tubes and (gulp) even cervix removed. Lynch syndrome increases the risk of ovarian cancer to like 10% (which seems small but OC is damn near impossible detect before it is deadly) and uterine cancer to like 60+%. Since the cervix is technically part of the uterus (which I did not really previously know) it has to go too.

Since I will not have a uterus, and since colon cancer isn't estrogen linked like BC, I can have estrogen. My gyn onc said that's NBD. I'll be asking her about whether a more extensive cocktail (containing progesterone or even testosterone) might be worth trying.

It will be OK. I mostly lurk, but in the last 5 years I've had two surgeries and now have one ovary left, which is no longer functional anyway. Hormone therapy is helpful. It took a little while to get the amount of estrogen right for me, but it makes things so much better. If you want to talk/freak out one on one, or if you want to ask anything about my experience, pm me. It will turn out OK.

Sent from my SGH-T889 using proboards

[curbsideprophet]

No advice but I hope your doctor is able to answer all your questions and give you some peace of mind. Good luck.

[Deleted]

Dec 19, 2014 18:31:42 GMT -5 epphd said:

Again, thanks for the kind words and stories! Michelle I love prayers, good thoughts, all that stuff - thank you.

I'm not at all worried about the surgery. It's not just not abdominal, it's fucking robotic so that's rad. They pull everything out through the vaginal wall. Seeing as I had IVF retrievals 4 times this scares me zero.

So the no cervix/no pap thing - totally true. But I am honestly wondering how the hell my vagina won't fall out? I know that sounds stupid but the anatomy is sort of confusing -the vag ends at the cervix and the uterus sorta holds it all up, ammiright? Is it just like a sleeve in there afterward? Will the deed be as "deed"y as it was before - for me and him? Really it's all about the sexy time. And also I don't want to have to closely watch what I eat, which I can kind of get away with now.

Ahhh lots of questions for my doctor. Thanks again

I just finished a month long rotation in gynonc and did robotic cases weekly (abdominal and lap hysterectomies daily)...did 3 robotic cases today actually. Before that was on urogyn where we did similar cases. Obviously I'm not an expert at all, but I can try to answer some questions. 

I bet if you wanted to you can youtube a robotic (or laparoscopic) hysterectomy to try and understand the anatomy a little better. But basically what happens is after everything is removed there is a hole at the top of your vagina into your pelvic and abdominal cavity. We just sew it up, it's called a vaginal cuff and you're good to go. Your vagina is pretty much just the hole/tube inside you so it's not like it could fall out. There are different types of pelvic floor prolapse in which other organs protrude, but that's a whole different issue!

As far as sex goes, I haven't heard many (younger) women have major complaints. I'm sure your doctor could answer more specific questions and they might even have some advice. I know for me personally some sex positions hurt because my cervix keeps getting hit, so participating in so many hysterectomies over the past years has made me wonder if I ever have one if sex will be even more amazing without my cervix getting rammed lol. Something to think about Anyway it might be kind of awkward to talk to your doctor about sex, but we really do hear it all in obgyn and I've learned that it's nice to pass on tips that other patients have shared.  

I hope what I've said kind of makes sense. Good luck with your surgery and I hope your sex life continues to be great afterwards! I'll be thinking of you. 

[aussiecrush]

My mom had a total hysterectomy at 43. She is the opposite of a sexless, brittle hag. Drugs, surgery and information are a million times better now, so I think you've got a lot of positives there. Also losing the weight of worry can only do good things for both of you.
Wishing you all the best with surgery and recovery.

[cinnamoncox]

No advice just support. I can only imagine the questions spinning in your head. I agree with tacosforlife she said some great things here. Good luck.

[WOT?*]

Just another one to chime in to say that I had an ablation not a hysterectomy so my stuff is all second-hand. My mom had a full hysterectomy because ablation wasn't available back in the day. This was before she met my step-dad so it must have been about 35-38 years ago. She has the occasional chin-hair because we're predisposed to them (I've been plucking or waxing for longer than I care to admit) but her body hair is completely normal - she is no hairy gorilla. As for the sexy part...she got married about five years after her hysterectomy and to my recollection had a pretty decent sex life with SD (ew!) and even now at 74 she looks at least a decade younger and is one of the lucky ones that has a "man friend" who is pretty good to her. (He's driven her up here and into Canada, they've done trips to Mexico and in March they're going to Iceland. Not bad for an old lady with withered and non-existent girl parts.)

[epphd]

Dec 19, 2014 21:46:40 GMT -5 @wandering said:

Dec 19, 2014 18:31:42 GMT -5 epphd said:

Again, thanks for the kind words and stories! Michelle I love prayers, good thoughts, all that stuff - thank you.

I'm not at all worried about the surgery. It's not just not abdominal, it's fucking robotic so that's rad. They pull everything out through the vaginal wall. Seeing as I had IVF retrievals 4 times this scares me zero.

So the no cervix/no pap thing - totally true. But I am honestly wondering how the hell my vagina won't fall out? I know that sounds stupid but the anatomy is sort of confusing -the vag ends at the cervix and the uterus sorta holds it all up, ammiright? Is it just like a sleeve in there afterward? Will the deed be as "deed"y as it was before - for me and him? Really it's all about the sexy time. And also I don't want to have to closely watch what I eat, which I can kind of get away with now.

Ahhh lots of questions for my doctor. Thanks again

I just finished a month long rotation in gynonc and did robotic cases weekly (abdominal and lap hysterectomies daily)...did 3 robotic cases today actually. Before that was on urogyn where we did similar cases. Obviously I'm not an expert at all, but I can try to answer some questions. 

I bet if you wanted to you can youtube a robotic (or laparoscopic) hysterectomy to try and understand the anatomy a little better. But basically what happens is after everything is removed there is a hole at the top of your vagina into your pelvic and abdominal cavity. We just sew it up, it's called a vaginal cuff and you're good to go. Your vagina is pretty much just the hole/tube inside you so it's not like it could fall out. There are different types of pelvic floor prolapse in which other organs protrude, but that's a whole different issue!

As far as sex goes, I haven't heard many (younger) women have major complaints. I'm sure your doctor could answer more specific questions and they might even have some advice. I know for me personally some sex positions hurt because my cervix keeps getting hit, so participating in so many hysterectomies over the past years has made me wonder if I ever have one if sex will be even more amazing without my cervix getting rammed lol. Something to think about Anyway it might be kind of awkward to talk to your doctor about sex, but we really do hear it all in obgyn and I've learned that it's nice to pass on tips that other patients have shared.  

I hope what I've said kind of makes sense. Good luck with your surgery and I hope your sex life continues to be great afterwards! I'll be thinking of you. 

THANK YOU! That's really helpful. I will doing some reading too online - I've heard hystersisters is a good resource. And I know I need to get a handle on what my recovery will be like. My surgeon asked me how my resection recovery was (after the first 24 hours it was pretty dang trivial) so I assumed that would be the barometer. Now I'm worried I've been too cavalier. Anyway - I'll shut up now. You all have been really helpful so thank you!

[gottadobe]

Just sending support, as I have no experience.