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Okay, Now I Have Questions Okay, Now I Have Questions

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  #1  
Unread 01-07-2002, 11:12 AM
Okay, Now I Have Questions

Hi all,

This site is a godsend! It has answered most of my questions, but after perusing almost all the messages in this section, I find that I still have a couple, one a little on the stupid side and the other more serious.

I am a 44yo woman who has been having major problems with periods, and related problems as well, for a number of years. I have had several procedures done for cervical dysplasias and for the next stage of abnormal cells (for the life of me, the name of this stage is escaping me now). Each of these procedures has given me limited or no relief. I have also been on various types of birth control pills that have been no help at all. On December 26, I had a hysteroscopy, a laparoscopy, and a D & C. The preliminary diagnosis is adenomyosis, and I am SO grateful that I finally have a diagnosis that will force my insurance company to sanction a hysterectomy. (Not that they have yet, but they're going to!)

My first question is this: I sleep on a heated waterbed, and have for many years. It is extremely comfortable, however I can foresee that there could be trouble getting in and out of it easily. As an alternative, I could fold out the futon in the living room, which might be a good idea since the TV and stereo are in that room, and I can also set up my computer there as well. However the futon is comparatively as hard as a rock and much harder for me to sleep on. Anybody out there who slept on a waterbed after surgery? If so, how did it go for you?

I will of course have them remove the cervix at the same time as the uterus. However, I am thinking seriously of having my ovaries removed as well, even though they look okay right now. My reasons for having this done include a history of ovarian cysts (my mother and my grandmother) and ovarian cancer (my aunt just died from this) in the family. There is also a strong history of osteoporosis, and my understanding is that HRT can prevent my getting this. Another big reason I am considering this is because of the circumstances I am in right now. I am in good health aside from my uterine problems, and I would much rather have surgery while I am healthy than as an emergency fifteen years from now. Also, I am VERY lucky to have such supportive home and employment environments. As things are now, I can take as much time as I need to recover completely; I have nine weeks of sick time built up (yes, I have been preparing for the day I could have a hysterectomy!), a wonderful, caring SO and son to take care of things while I take it easy, and if by some chance I need more than nine weeks of recovery, I can work at home. Heaven knows what the circs would be if I had to go back in for more surgery in ten or fifteen years, but I cannot imagine that they will be as advantageous as they are right now. I'll discuss this in more depth with my GYN when I see her for preop on Feb 7, but I'm gathering information now so I'll be better informed about the pros and cons.

Finally (yes I know this is three questions but what the heck), can a bladder tack be done if I decide to keep the ovaries and do a TVH? I had never heard of such a thing before visiting this site, but heaven knows I could certainly use one! Of course I'll talk to my GYN about this as well, but I'd like to get more information about it beforehand.

Thanks to all, this is the first supportive hysterectomy site I have come across, and it's a BIG boost to me to know I'm not the only person out there who can't wait to be pain free and not being constantly congratulated on my pregnancy (uterus is enlarged to sixteen-week size).
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  #2  
Unread 01-07-2002, 01:58 PM
Answers?

I am a 38 yo and I'm headed for my TAH/BSO on Wednesday. I'm having the same "to keep the ovaries, or not to keep the ovaries" questions as you for some of the same reasons. While I don't really have any suggestions, I might have some info on your bed and bladder tack problem.

Have you considered renting a hospital bed? Or borrowing a small portable bed from someone? I would think the water bed would be very hard to get in and out of. The pull out sofa we used to have was terribly uncomfortable and had bars that were always in the way. Maybe someone who has a waterbed can offer more help there.

I asked my dr today about the bladder tack issue. I asked if he would do this routinely and he said no. Only if I were having problems with incontinence while coughing or sneezing or other problems with the bladder such as prolaps. I am fortunate not to have any problems so he isn't thinking to do one. He did say that if one were warrented that he would send me to a urologist to be sure that they used the right one for me.

Hope that helps, good luck with your insurance company! Hoping that 2002 will be pain free for you!
  #3  
Unread 01-07-2002, 02:21 PM
Okay, Now I Have Questions

Dear Lisa,

One more thought on the hospital bed. Today I rented over-the-bed tables and while on the phone with the medical supplier, she told me that my insurance would likely cover not only the tables, but the renting of a bed as well. Your coverage might be the same, so check it out. She also told me that I should submit all bills for things like wedge pillows (bought the 10" based on a hyster sister recommendation) and a grabber (picker upper thing) and whatever other expenses incurred. She was submitting the bill directly to my insurer. I didn't rent the bed, but I sure would if over a waterbed or a Futon.

Good luck!

Kate in Mpls
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  #4  
Unread 01-07-2002, 04:12 PM
Okay, Now I Have Questions

I can relate to a lot of what you said in your post. I am older than you, 51, and I am having a LAVH on Feb. 1 due to cervical dysplasia. My dr. recommended removing my ovaries as well and I think at this point that is what I will do. I do NOT want to have to go back in 10 years or whatever for more surgery. I have no choice in keeping the cervix, as that is why the surgery is happening in the first place (dysplasia).

I think you make a lot of sense when you say this is the best time for you to have the surgery. I was told by a nurse that it is much better to have surgery when you are healthy, before a big problem arises. I am not looking forward to the surgery and the recovery period, but if I have to do it, this is probably the best time for me too.

I am also, I believe, having a bladder tack at the time of my surgery. I don't know anything about this procedure, but it has become VERY annoying in the last year or so when I cough or sneeze. I had bronchitis a few months ago and had to wear a pad because I was coughing so much and having "accidents."
  #5  
Unread 01-07-2002, 04:22 PM
Okay, Now I Have Questions

I used to own a waterbed and would never have been able to get in and out of it after my TAH. I rented a twin size bed, not even a hospital bed, but a regular twin size bed, from a furniture rental store. I got it for 30 days for $40. It was WORTH it!!!! I would do it again in a heartbeat. I also went through the keep them-take them question of ovaries. I was 35 at the time of surgery, but I was more afraid of further complications with my ovaries and ovarian cancer than I was of being on HRT for the rest of my life. So I had both ovaries taken. And I'm glad I did it. I'm on estrogen and progesterone, plus 1800 mg of calcium a day, plus vitamin d. My emotions are evened out, and I can handle the physical side effects of missing my ovaries (less lubrication, for example, but we've just gotten used to using KY ) Blessings, MaggieC
  #6  
Unread 01-07-2002, 04:27 PM
Okay, Now I Have Questions

Lisa - I have waterbed (semi baffled) and I knew that I would have a hard time getting in and out of it after my surgery so pulled out the couch in the living room and slept there. Our couch is pretty hard too...so I bought one of those foam thingys at walmart to put on top of the mattress to make it more comfortable. It worked fine. Others have stayed in their waterbeds and did fine too....so it's basically up to you. Comfort is the key.

PS - My dh is also an active sleeper (tosses and turns a lot) so figured I'd be "safer" in my own bed for awhile
  #7  
Unread 01-08-2002, 07:17 AM
Thanks VERY much!

Thanks so much to all of you that replied. Your responses are most helpful to me in planning, both for after surgery and what I'd like done. Especially important is that I have had my thoughts on the surgery clarified to a great extent.

>I think you make a lot of sense when you say this is the best time for you to have
>the surgery. I was told by a nurse that it is much better to have surgery when you
>are healthy, before a big problem arises.

I agree. This'll be my first hysterectomy =) but as a rescuer of unwanted dogs, I take care of around 10-15 snorfles each year. At this point, I have done aftercare for something like 100 newly snorfleed dogs, and I have noticed that those who were young and healthy to start with had MUCH quicker and less complicated recoveries than older girls who had other problems (parasites, etc). This difference is so marked that, except in emergency situations, we have ceased snorfleing until we know that they are as healthy as possible. Incidentally, we have also found that providing pain medication after snorfleing helps greatly in the swiftness of recovery (maybe from reduction of stress?). I'm not a dog, but I can make the connection, and you'd better believe that I will take advantage of whatever pain medication is offered to me. The pain can't possibly be worse than the ongoing cramps I have been putting up with for years, but I'd just as soon be done with suffering in silence altogether =)

>I am not looking forward to the surgery and
>the recovery period, but if I have to do it, this is probably the best time for me too.

Yeah, the hard part for me is going to be sitting still. I'm stockpiling projects, but I ordinarily lead a VERY active life so this staying quietly at home thing is going to be tricky. Oh well. It'll be worth it if I can get to feeling better again.

>I am also, I believe, having a bladder tack at the time of my surgery. I don't know
>anything about this procedure, but it has become VERY annoying in the last year or
>so when I cough or sneeze.

YES. That is exactly what's been happening. I would like for it to stop.

>I rented a twin size bed, not even a hospital bed, but a regular twin
>size bed, from a furniture rental store. I got it for 30 days for $40. It was WORTH
>it!!!! I would do it again in a heartbeat.

This is a WONDERFUL idea. I will check around and see what's available. I called about the hospital bed, and they want an *exorbitant* amount of money (I could buy a bed for what they want!) to rent one of those. This sounds like a much more viable alternative. The table thing wasn't too bad, and I will definitely be renting at least one of those. If my insurance would cover this sort of expenditure I'd go for the hospital bed, but it won't so I'll have to do some compromising.

> Lisa - I have waterbed (semi baffled) and I knew that I would have a hard time
>getting in and out of it after my surgery so pulled out the couch in the living room
>and slept there. Our couch is pretty hard too...so I bought one of those foam thingys
> at walmart to put on top of the mattress to make it more comfortable.

I already have one of those on the futon, and though it has helped a great deal, it still isn't all that comfortable. Maybe a second pad would improve things to the point that I could stick it out on the futon.

>Comfort is the key.

I agree. If I am going to have to stay home and get no exercise except walking for several weeks, I might as well be as comfortable as possible.

Thanks again! I feel a lot better about where my thinking is going on this.
  #8  
Unread 01-08-2002, 02:29 PM
Questions

Hi Lisa, I was wondering how long had you been diagnosed with cervical dysplasia before you decided to have the hysterectomy? I too had a colposcopy in august, then a leep in september, they said the margns came back clear, now I go on thursday for my 3 month pap checkup. Were you diagnosed with cancer of the cervix? sorry for all the questions, I guess I am getting a little anxious with my appointment this week coming up.
  #9  
Unread 01-08-2002, 05:51 PM
waterbed

Hi. Thanks for asking those questions as it helped me too. My surgery is 1/15. I'm leaving for Texas tomorrow so I feel like the'journey has begun'!
I had a myeomectomy in 1992 and a c-section in 1996. In both cases, I normally slept on a waterbed, hard sided. There was NO way I could get in and out without killing myself. I slept on a single bed in a room with a tv and remote!
  #10  
Unread 01-09-2002, 07:14 AM
Okay, Now I Have Questions

[quote]Originally posted by sunnyfla
[b]Hi Lisa, I was wondering how long had you been diagnosed with cervical dysplasia before you decided to have the hysterectomy?

*SNORT* If I'd had my druthers, I would have had this surgery done seven years ago when I had my first bad pap smear. I've had three LEEPS and a cryoscopy (I think that's the word -- it's the one where they freeze it off) since then. I've also had various hormone therapies, none of which did anything except make me FAT and unable to get the weight off. I know they work wonders for some women, but they sure didn't do much for me. Throughout, I have suffered the incredibly heavy and lengthy periods and incapacitating pain at least ten days out of the month. We haven't done further testing in the past because I've been having bad pap smears at least once every 18 months, so that was thought to be the source of the problems I've been experiencing.

Why didn't we do the hysterectomy earlier anyway? Because my <expletive deleted> insurance company refuses to approve them for women with cervical problems unless there is full-blown cancer. I've been good about getting frequent paps so nothing ever got past the pre-cancerous stage. I actually got to the point where I thought about skipping a few pap smears just so things would have a chance to progress to a point where they would be forced to authorize a hysterectomy, but decided that would be a bad idea. No point in making a bad situation permanently worse! There was also the issue of my relative youth -- the fact that I was still young enough to produce children was another sticking point. HELLO, I had a tubal ligation two hours after the birth of my second child in 1980. You'd think this would send them a message, but apparently not.

I had a call from my GYN's office yesterday, telling me that the insurance company is being sticky about authorizing surgery. They wanted some more details about what I've had done and how I'm feeling now, just in case there's some other band-aid procedure they could force me to have. I am very lucky that my GYN is determined that I am going to have this surgery, these HMOs can be SUCH a pain sometimes.

Things got worse shortly after my July check-up. In August, I started having very nasty periods twice a month, each one worse than the last. I did my check-up in November, and ran some blood tests at the same time, then went in for follow-up a few weeks later. At my last appointment in December, my GYN looked at my tests, checked me out, and said, "I'm going to give you a Christmas present. You're going to have a hysterectomy." We did the lap and the hysteroscopy and the D&C all at the same time because the insurance company requires all three before they'll authorize a hysterectomy and she didn't want to drag this out any longer than necessary. God bless my GYN, she is a keeper!

There are two morals to this story:

1. Avoid HMOs if you can possibly help it.

2. Even HMOs can sometimes make the mistake of hiring good GYNS!
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