I'm having a hysterectomy...

[SandyRN]

and I'm scared already. I used to work on a gyn surgery unit sometimes as a float RN and know what to expect and it scares me because I am on so many pain meds. I talked to the doctor today, whom I ADORE and trust, and he said he promised that between himself and my pain mgmt doctor they would keep me comfortable post op and at home recovering.

We're hoping to do a partial, saving my ovaries....but he said lots of women with IC have endo and they can't necessarily see it from the ultrasounds I had done in the past, and if they find endo they'll have to take it all out. I said FINE! Just do it! LOL

He also said that my uterus is real tipped and up too high for them to do a vag hyst so they have to do an abdominal incision. THAT is what freaks me out...not any part of it scares me but the pain mgmt part of it, and as long as everyone says they'll take care of me I'll chill out about that part. I have a pain mgmt appt on Wed so I'll talk to him about it then.

So, here I go on the journey so many of you have been on. I worry about the IC and my fibro and my back, etc, but I keep telling myself I'm a nurse and I KNOW I'll be ok......sigh

Sandy

[SharonA]

Do you have a date scheduled as yet?

[SandyRN]

I want to know from those of you who had the surgery did you keep your cervix or not? I know about the possibility of a prolapse if you keep it and you have to keep having paps done yearly or bi yearly. I'd like to hear both sides...those who kept the cervix and those who had it taken out.

Thanks!

[SandyRN]

Sharon, not yet. It has to be approved by insurance first, and since it's elective I'm a little worried. I have really good insurance so we should be fine, plus I also have medicare as my secondary insurance, so I should have little or no bill at all.

Anyway, long way or saying no date yet. They said they would call me to schedule it in about 4-5 business days.

Sandy

[Bessie]

I had mine removed over 20 years ago but they still do pap smears every year. Not sure why? :hmm: I guess I need to ask my doctor about that.

I pray that all goes well with your surgery and that you get relief from your painful periods. I know you deal with that terrible pain every month. I kept one ovary when I had my hysterectomy and it caused me so much grief. I ended up having several surgeries trying to save that last ovary and finally had it removed a few years ago. I use the Vivelle Dot Patch and it works well. I only wished I would not have waited over 3 weeks to use it. :tsk:
I should have slapped it on right after the surgery.

I think your pain management will go well. Your doctor seems very concerned and compassionate. Can you have something in writing from your pain management doctor that states what kind of pain control you will need?

I am praying for you :pray::pray::pray:
Hang in there :angel:

[anewday]

I had one back in October, it was one of the best decisions I have ever made. I ended up having my ovaries removed too. I had an ablation /lap removal of the endo (no periods) 6 months before- the endo STILL came back, worse than before. It was all over my female organs, my bowels, and had glued my intestinal wall to bladder and he had to scrape my bladder off. He was really good with my pain meds. In fact, after the first week I called and asked for another RX. The nurse said "truthfully, most patients don't need pain meds pasat the first week with the Da Vinci surgery". I went to the doctor thinking something was wrong and he said "Honey, do you have any idea what we had to do to you? You had major, intense surgery and will need pain meds for at least the next 2 weeks." I can only imagine what the endo on my bladder and the scraping off did for my IC! I wished I'd had it done a lot sooner.

[Mothergoose]

I needed a hysto for andemiosis, made my uterus really big, my uterus was tipped. Dr. said I had to have the insision kind because of these reason's, but I wanted a vagnial hysto, I asked for a secound opinion, he sent me to his associate. Well I just loved this guy, he listened to my concerns, he said I would probably need the insision but that he would try, I was okay with this, when I woke he had done a Lap assisted vaginal hysto, nurse said she hadn't seen this before and my new gyno (this one moved) hadn't seen it either. When I talked to him afterwards he said it was close to being opened up because it was too big to fit through whole, but one last try did the trick. I did have cervice removed, and my Dr. says no need for paps anymore, but different docs feel different about this. I have overies but for the most part that has been fine, I used to know when i had my cycle but I don't notice it any more. I would ask about this procedure, you never know.

I do feel having a hysto was the best thing I ever did for myself.

[leelee88]

Sandy, I know it sounds scary but I am sure the Drs know what is best for you.. Please keep us updated for when it will be scheduled..

[Golden Girl]

I had a total hysterectomy. I had no endometriosis or anything else abnormal except for fibroids. One of which was huge and caused my bladder to suddenly prolapse and I'm sure cause my IC. I really regret having my cervix removed for several reasons. Prolapse in later years is one plus I'm embarassed to say it but sensation during sexual activity. The lifetime risk of cervical cancer is extremely low for women who are no longer young and single. Even without a cervix, pap smears have been recommended to be done every other year or so. I've read of statistics of vaginal cancer being more common too. Of course that's rare but I'm an RN who worked at a regional referral hospital. There are cases of fibroids coming from remnants of the cervix too. Pick whats right for you.

[Mothergoose]

My gyno said that if I was one who liked outer stimulation, things probably would not change, but if you are stimulate by deep penetration, then removing the cervic my effect how intercourse feels. I never felt anything any different, and I would bet women with IC and the relate problems, probably do better without the deep penetration.

If you are debating what to do I would see if I could see or talk to your dr. again before sugery. Write a list of things you want to know, and how he feels about them. Such as AB surgery verses vaginal, cervices in or out, overies in or out, how will your pain be delt with, if you can take your meds prior to surgery on the day and if so which ones.

I know you are asking here and you will get lots of opions, and that is not wrong, but if you are at all unsure you should talk to Dr. again. This is a big step and deccision, you need to feel good about it afterwards. Keep asking things that come to mind because then when you go ask Dr. you will have a good idea what you want to happen, and hopefully he's on the same page.

Good luck Mothergoose

[mlzippy7]

Good Luck!! I hope everything works out for you!!

[amaranthe]

I had a total abdominal hysterctomy w/ both ovaries and my cervix removed several years ago. Mine was done b/c of Endo and pelvic adhesions, (that's why my ovaries had to come out too.) For me, the pain was really bad during my period and before. For two weeks every month, I was totally incapacitated, so it was a HUGE relief not having that pain anymore!

I agree with how Mothergoose's Gyno explained things sexually. If you are more stimulated by deep penetration, then you might notice a difference, (particularly if your partner is umm well endowed.) However, if your partner is on the medium to small side, or if you prefer outer stimulation, then it wont matter much to you sexually.

Oh! One more thing! Don't forget to check out www.hystersisters.com It is a great site that can give you alot of great advice on this. I LIVED there when I went thru mine and don't think I could have got thru it without all of them there!

Good luck! Hope you feel alot better after yours too!

[BrittanysDance]

Sandy,

Sorry you're having to have a hysto done, but I hope, in the long run, it makes you feel better. I had to have one done when I was 30 (many years ago) - and I had a Lap with a vag. assist. They did rupture my bladder w/ the laser unfortunately, so my recovery was a little longer, was in the hospital for a week and I went home with a foley for about a week or so afterwards (everything shuts down on me when I go under general for whatever reason..) but..all in all, I turned out okay.

They took everything on me. As far as sex goes - I have no deminished sexual feelings at all - anywhere - even without my cervix. This is because you have a ton of nerves in the vaginal cuff area; so I can acheive both orgasm via internal and external stimulation without any issue. The only problems I have is dryness (which I had before the hysto, but not as badly) and that I was put into menapause at 30 - so I am on Premarin .625 daily. I tried others (the patch Climara, and a few others) but they caused my migraines to trigger worse - so Premarin it is and has been for years. I started my mammo's at 35 and have been good. I have PAPS yearly too - but just recently went to every 2 years at my gyno's say-so since I'm good and have been for years so as not to have cancer of the vaginal wall or cuff (rare but does occur). I also have Osteopenia and am very very borderline for Osteoporsis (that came on very quickly, which was shocking to me) so i do have to increase my calcium along with Vitamins B, D and K. In years since my last bone scan, it increased badly in my hips - where it wasnt before, so last year I upped my calcium (I take Viactive chews daily) as I'm not much of a milk drinker - so I eat alot of yogurt and cheeses.

My IC, IBS and PFD are the main issues that prevent me from sex as much as I'd like to - not the hysto, oh. ..and the vulvadynia. But...all in all - I'm better. I didnt have it for the pain of IC - I had it for endo, pelvic pain, adhesions and severe periods.

Good luck sweetie and try not to worry... :) You'll be okay.

Hugs
Brittany

[Golden Girl]

The cervix is a source of lubrication, abet a minor one. There was a great article recently in the LA Times about what specifically in female anatomy makes our sexual responses so different. Physiologically why. Its certainly not a deep penetration issue with me, closer to the opposite is true. The cervix is full of nerves, the vaginal cuff not so. The nerves intervene surrounding areas. That's why your Gyno can poke the cuff with a hemostat and you won't feel a thing. Also check the Study of a Dr. Parker, that proved women are more likely to reach 80 if they still have their ovaries.Actually, reaching ripe old age was the last thing on my mind when I needed my hysterectomy! A Urogyno, Dr. Jennifer Berman(among others) has written some good papers about nerves and hysterectomy's. I think a lot of women don't care about this any more by this time of life, they are sick of relationships anyway and don't have a current partner.

[amaranthe]

As to the sexual response part, I guess like everything else, we are all so different, that it will be hard to know for you until you have it done. But, you are doing the right thing in researching and asking lots of questions. The more you research the better. This is the link to Dr. Parkers research that Golden Girl mentioned. http://www.ovaryresearch.com/media-responses.htm
And this is the link to one article about sex after hysterectomies where Dr. Laura Berman talks about the nerves. http://women.webmd.com/news/20031002/better-sex-after-hysterectomy

I dont regret having mine removed, but I know it is a something each person and their Dr. must decide on a case by case basis. I DO know I didnt research it enough before I did it though. I was in so much pain that I just wanted things taken care of right then. But, you have time and I encourage you to read everything you can get your hands on, and of course pray about it too. I am sure you will end up doing the right thing for you too.

[lisabar36]

Hi Sandy. I know you know my story. I had adenomyosis and I have everything removed. I have not suffered any menopausal symptoms with my vivelle dot patch and the only thing I would have done different is get an epidural. I also had a tilted uterus and I was not a candidate for a pelvic hysterectomy because of PFD. I don't have any regrets but after bleeding for 5 months, I was so ready. I don't miss those horrible painful periods. I actually feel fully recovered from that now, and as I said, I stress the epidural because the pain doctor knew I should of had one but the doctor insisted on the incision on q pump, well the incision was the least of my problems after surgery. Even after that pump was out, I was handling the incision pain, it was the bladder pain I felt when I woke up that was the worst part of my surgery. And of course we are all different. I don't have any regrets. My doc thought in my case, everything being removed was my best option, and thats what I wanted also. I didn't want to have any potential problems later. The only issue I have is my gyn refuses to lower my vivelle patch dose, I am on the highest dose and I am not having any problems what so ever, and I feel like she should lower it to atleast .75 and see how I do but she said no. I have an issue with that because my mom had breast cancer when she was only 34. I know the patch is really a lower dose then the pills, but I personally would like to be on the least amount of estrogen needed. She tells me thats not possible for the first year or 2, because of bone loss and now that I have new insurance, and she doesn't take it, I am going for a second opinion on that. If he tells me the same thing, I will be fine with it. Other then that, I can't complain because the patch prevents all my menopause symptoms. I wish you the best and I am here for you every step of the way. :)

[charmedx3]

hey sandy-- I had my uterus taken out in nov 04. I decided to keep my cervix. I ended up with a prolapse cervix. To have the cervix only removed was awful!!! I would recommend take out all but ovaries . I have not noticed a difference with sex---well less pain. with your cervix in you may still spot once a month, I did! since the cervix is gone no more spotting! pm me if you have any questions.

[girl]

I had my hysto 17 years ago, and have never regretted one minute of it. I was only 25 at the time, and was never even aware that I could choose to retain my cervix - it was removed. I have never noticed any difference in sexual feelings, except that I could have sex a whole lot more since I wasn't bleeding horrendously continuosly. :) I had my right ovary removed a year later (I begged them to remove both of them the first time - did they listen?:mad:)

The only problems I have had were increased dryness (and that went away after a bit - my ovaries shut down for a few months but then started working just fine again.) Oh, and I was grouchy as a bear with a toothache for a while there - I was told that was from the ovaries shutting down also.

Again, though, I've never regretted having it done, only that they wouldn't take the ovaries with it! (I am now currently deciding on whether or not to have the left one removed, and maybe I will finally be DONE!)

[Golden Girl]

Amaranthe gave a link to the most quoted survey of sex and hysterectomy involving 310 women. Do a little more research and you will find they were all of a certain age (40's) and had a certain diagnosis(which I can't recall)Just last year a large (11,000 women) survey came out of England comparing women 5 years past hysterectomy vs endometrial abalation and guess what-the 5 indications of sexual dysfunction were way higher in the hysterectomy group. Another recent large survey has proven bladder prolapse being significant enough to require surgery is significantly more common in women who have had a hysterectomy. This is not to deny the fact that some women will greatly benefit from a hysterectomy but we need to look at studies carefully. (If someone needs more info or links, they can pm me.)

[SandyRN]

Thanks all, I'll reply when I feel better....just started another period (2nd in 18 days) today and feel really BAD! I just want my heating pad and a soft shoulder to cry on. (Tom's)

Thanks for all the replies. I promise to read them when I can sit here for longer than 2 minutes.

Hugs, Sandy

[Dreamlove15]

Hi Sandy,

I just wanted to say that I hope everything goes smoothly with your upcoming surgery.

I'm sorry your having to go through all of this, I know it isn't easy, but just know there is a light at the tunnel...

I will be thinking about ya and I pray that they take care of everything...

and hopefully your IC pain will dissipate at least some or maybe ALL. wouldnt that be great?

And I just wanted to say thanks for being there for me these past few weeks.

It meant alot.

Hope you start to feel better real soon. And ill be praying for ya.:pray:

[sandymarie]

Sandy,

Do you have a date set up for your surgery. I will be so glad to see you have better days. My daughter has to take vitamin D and calcium or she has horrible cramps. She is only 27. I had crqamps when I was younger, but my periods were never just horrible like yours are. I hope and pray that you feel better soon. Keep us posted. ok


JJ

[SandyRN]

Just got the date today, posted it on my other whiney post...lol...it's the 12th of Sept, don't have a time yet but they're mailing me the rest of the info.

Thanks to everyone for the info, and concern. Right now lack of sexual drive is the farthest thing from my mind. I just want this bleeding to stop and the horrible periods to stop....then we'll deal with the rest when it comes.

Hugs, Sandy

ps...Lisa, thanks for the info on the patch. I've written it down to ask the doctor about. I need to make another pre op appt with him because I have decided to have everything out and have some questions for him that I don't want to ask in the OR prep room when he pops his head in.

[SharonA]

Sandy...I am sure you are thinking that September 12 is a long way off. I hope the days pass quickly for you. I hope that this latest problem stops. Sending you lots of (((hugs))).

[waterflow]

Good luck and hope it all goes good for you and as much less pain as possible. Do you think maybe since you were a nurse and you know what to expect on it all you are more worried about it then a peron who doesn't know what to expect? Sometimes not knowing is better then knowing. It's that way with me.

Are you going to throw a big going away party for Aunt Flow? You know, balloons, clowns, cake, prizes the whole works? Maybe make an Aunt Flow Pinyata (I know I spelled that wrong) and everyone can take turns hitting it.

[mary124]

Sandy;
Glad you have a date set (yes, sometimes you might think that the 12th is a long way off--but it will be here soon!)
You will feel better after you have one-granted not right away, but soon after.
Mary had a great suggested, lets have a party! Let me know what I need to bring!
good luck and take care.

[SandyRN]

I'd love to have a party for ending my painful cycles! Ya know, y'all are gonna think I'm strange, but I kind of mourn for my uterus. I don't want anymore children, I'd done with that, but that is such a meaningful part of me....and while I'm REAL glad that this bleeding will stop, I still feel like a part of me that was very important to me is going to be gone....it gave life to my 3 kids. I read about this on hystersisters, so I know others have felt this way. I told Tom and he just looked at me....he wouldn't get it, he hasn't given birth or felt a baby move inside him....or maybe it's just a surge in hormones right now because I have been a tearful mess.

Mary, your post made me laugh and that was a very good thing right now!

[crazy_beautiful]

Sandy,
You will be fine. as you know to expect pain, don't let them take out your IV and still be cathed. My bladder decided it wasn't going to function when they did that. I also was supposed to have a pain pump, but they "forgot". I did pretty well pain wise, unlike you tho I only had incisions for lap removal. It took a great deal of pressure off of my bladder, that alone was a relief.
keep us posted, if you want to talk you know how to get a hold of me. :grouphug:

[TexasHoney]

:grouphug:Sandy

Good luck with the surgery. I'm sorry you have to wait that long.
:pray::angel:

[SandyRN]

I'm still facing worrying over pain. I woke up from my hydro in horrible pain that was more fibro related than anything...I felt like I'd been hit by a few mack trucks then had them back up over me again and again...not to mention the bladder....so...I'm afraid of the post op pain. I know in the recovery room they'll give me meds, but it's on the floor that I worry about. I know the nurse manager of the unit so I am going to call her and give her a heads up about me coming there so hopefully they'll cut me some slack and at least give me my meds on time or as needed for pain and not judge me because of what I already take.

I'm trying to get my life in order now that the second period from h@ll is easing off. I want my house clean, groceries bought, food cooked and frozen for Tom to reheat (he can cook but he'd rather order pizza), etc, etc. Kind of like nesting before a baby comes I guess as I did those same things back then too.

I am just nervous, I know too much for my own good I think. :(

Thanks for all the support...it means a lot to me.

Sandy