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I'm supposed to schedule my TAH today. I'm supposed to schedule my TAH today.

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  #1  
Unread 09-19-2011, 08:15 AM
I'm supposed to schedule my TAH today.

About a week and a half ago, I went to the ER with a fever and severe abdominal pain. After some testing, they found that I had a urinary tract infection, my white blood cell count was elevated and I have a tangerine-sized cyst on one of my ovaries. I do have a history of endometriosis. They sent me home with antibiotics and a follow up appointment with a gynecologist.

I should mention that I was scheduled for a hysterectomy five years ago, but I backed out. Instead, I opted to try a Mirena IUD. It seemed to completely stop my endometriosis pain and bleeding. It gave me back my quality of life, and I had no issues until this ER visit.

The gynecologist did more blood work, removed the IUD and did a pap smear. I haven't gotten the pap results back yet, but my CA 125 was slightly elevated (normal is 0-135, mine was 145). She referred me to a gynecologic oncologist, though I'm not too worried about cancer, since endometriosis can elevate the CA 125.

After examining my records, the oncologist recommended a full hysterectomy, with a "stem to stern" incision.

He's basing this on several thing- the cyst, the endo, an enlarged uterus and I'm having a lot of internal pain. It's become hard to eat and digest food, and (I know this sounds weird) it almost feels that there's no longer room in my body for all of my internal organs.

I asked about keeping an ovary. He said I could do this, but after he did a pelvic exam, he seemed disturbed by what he saw. He prescribed two heavy duty antibiotics. He said, "I'm going back to what I originally said-- you need a complete hysterectomy." Apparently, all of this-- the pain, the infections, the cyst and the digestive problems are all caused by the endometriosis. He's willing to do this my way, but he highly recommends that I have everything removed.

So, I went home and read more. I want to be at peace with this decision before I call to schedule this surgery (which I'm supposed to do today).

One of my biggest fears is losing my sexuality-- that I'll never feel sexy again, or that I'll end up with no desire. I'm in a relationship, but I think this has scared my significant other, and I know that there are no guarantees that he can stick this out with me. I'm okay with that, but I do worry that somehow I will change- that I'll lose "me" in all of this. I'm going to have a big ugly scar, and there's a possibility of weight gain, after I've lost over a 100 pounds and finally have a figure again.

Another concern is this: A main reason for doing this is to stop the endometriosis and get rid of the adhesions, which are apparently sticking to my organs and causing complications. But from what I'm reading, the surgery itself will probably cause adhesions and scarring, so I'm a little confused as to whether this would actually fix things.

Lastly, I worry about the expense. I just lost my job and I have no insurance. The hospital and doctors are saying that it doesn't matter- that I have no choice, but this all comes at a horrible time. I asked the doctor if he does baseline hormone testing (ideally, I want to try bio-identical hormone replacement), and he said, "No. Can you afford baseline hormone testing?" Um. Touche'.

On the plus side, I've read that a hysterectomy often clears up digestive and bowel problems, fibromyalgia and hypothyroidism, all of which I've got. I've read that this is a real life changer (for the better) for some women. I wish I had a crystal ball that would tell me if I'll be one of those women.

By the way, I'm fifty-one, and I've probably been going through menopause anyway, though it's been hard to tell where I am in the process because of the Mirena.

I do trust this doctor, but when I talked about hormones and sex drive, he looked at me like I came from the moon. I just don't think these are things he's concerned with-- he just wants to get this ugly junk out of me, and he wants to biopsy that cyst.

Thank you for letting me get all of this out of my system. I want to go into this surgery with a positive attitude and certainty that I made the right decision. I know that nothing's guaranteed with a hysterectomy, but I'm hoping for some words of wisdom before I call to schedule this.
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  #2  
Unread 09-19-2011, 07:51 PM
Re: I'm supposed to schedule my TAH today.

Please get a second opinion. There are things that you don't sound comfortable about and even though it will cost you, it is your body in the end. You need to go into this with a settled mind.
  #3  
Unread 09-20-2011, 11:27 AM
Re: I'm supposed to schedule my TAH today.

MoonieB..I am 9 mo post op after having TAH/BSO and dealt with huge ovarian cysts and endo for several years. I kept putting my TAH off and only caused myself further problems. I just came to the site today feeling the need to encourage the pre-op gals that it WILL get better..it may take awhile, but it will. I sometimes really feel I am still getting over my surgery due to all my complications but I can tell you this: I know my body is healthier after ridding myself of my diseased organs. Do I mourn for them? Yes, at times I do...I am only 37 and wanted to have a second child. I know it must be so hard for you right now struggling with what to do because if the insurance issue. I know getting a second opinion will cause further expense, but this is a permanent thing...we can't go back and reverse it. Sometimes I tend to second guess myself, even though I know my procedure had to be done. So I agree with Danni in a way. See if you can't get those records from the ER and from the oncologist gathered up and send them to someone that is recommended by friends/coworkers there locally and just see what they say. Surely you can get by with just a consult fee since they won't be doing any tests, etc on you. I just want you to know of all the support I had around me during my time of this, the Hystersisters site was the place I knew I could go to vent, to research, and to read about others that were going through what I was dealing with. I didn't feel so alone because of this site. I pray you find the right answer and that you will be at peace with your decision and that you will feel 110% better post op. Just remember, recovery is a process and doesn't happen overnight..so take care of yourself and try not to push yourself once you have the surgery. Best wishes, hun. I truly hope all goes well.
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