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Older women & hyst Older women & hyst

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Unread 12-22-2005, 12:48 PM
Older women & hyst

In a few months, I will be 60 years old. I have been experiencing bouts of heavy post-menopausal bleeding and spotting. My gyn has diagnosed adenomyosis (so much for those who think it completely disappears after menopause)--my uterus is extremely tender--even the ultrasounds hurt. I also have a simple ovarian cyst. None of these things should be happening post-menopause, according to my gyn. I had a negative endo biopsy. The ultrasound shows a very thick uterine wall. I have not done any HRT because of familial breast cancer risks. He says he suspects sarcoma and told me I need to have a complete hysterectomy (vaginal) as soon as possible. Yet when I asked lots of questions, including why he would think about taking out a perfectly healthy cervix (negative pap) and I raised the risks of incontinence, sexual dysfunction, bowel troubles, etc. he poo pooed them and asked why I was making such a big deal about this. He says these problems are so minimal as to be practically non existent. He did not offer a referral for a second opinion or seem to take any of my concerns seriously. He told me I might be really sorry if I didn't go ahead. He scheduled my surgery for Jan 26th.

This made me really angry and frustrated. He said no diagnosis can be made without a total hysterectomy and that I will just have to get over it. Thankfully I found this website and am feeling a little more empowered. I made an appointment today with a well respected gyn-oncologist in the "big city" for a second opinion--ironically scheduled for Jan 26th. Now I need to call my gyn and cancel my surgery and ask that my records be sent to the gyn-oncologist. Hopefully he will comply. Without some compelling evidence or at least some plan for dealing with the potential complications, I am just not ready to submit to the knife. Perhaps my nervousness comes from my gyn's attitude--I no longer trust him to put my needs above his.

For those of you who are older and long past menopause, have you had these problems and how did they resolve? What was your experience of hysterectomy? If you were diagnosed with sarcoma, what did you know going into surgery? Are there any further tests I should be asking about? Thank you all.
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Unread 12-22-2005, 01:21 PM
Older women & hyst

Well, I am 35, so I can't really answer any questions, but I think you are doing the right thing in getting another opinion!!!! It never hurts, especially with the tone your current doc took with you, I would not have been very happy either!!!!!
Best wishes to you and good luck!!!!
Unread 12-22-2005, 01:24 PM
Older women & hyst

Hi Hirsch,

I can suggest getting a 2nd or a 3rd opinion. From your post, it sounds like your Dr. is turned off to listening to your ideas about what you think is best for your body.

Wow...your Dr's appointment reminded me of mine. My 1st Dr. wanted to do a TAH (Total Abdominal Hysterectomy) for my large fibroids. She mentioned I was ~not~ a candidate for any other type of hyst. She also said I would need a bladder sling for incontinence and my bladder would not work the same again after surgery. Oh...and she never mentioned my cervix!!

I cried for 3 days and then I set up an appointment to get a another opinion. My 2nd Dr. recommended a LSH, a laparoscopic hyst. He wanted me to go on (3) months of lupron shots to shrink my fibroids enough for the hyst. He said *no* bladder sling since he felt my fibroids were pressing on my bladder causing the incontinence. And..he mentioned my cervix. He felt I was a good candidate to keep it since I had had normal pap smears for years and my cervix was sturdy. He felt the cervix helped with pelvic support and with sex.

Today, I am SO happy with my surgery results. My bladder works great. And my cervix?? For me, I notice the difference with the pelvic support and with sex.

Best wishes. Just keep researching and asking your questions.

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Unread 12-22-2005, 05:13 PM
Older women & hyst

Hi Hirsch

I'm 55, 4 years post-meno and had light spotting that concerned my GP. The ultrasounds, pelvic and transvaginal, showed a polyp, some fluid and some thickening of the endometrium. The GYN couldn't open my cervix for an endo biopsy but I was scheduled for a D&C anyway later that month. The D&C showed cancer which was a surprise - but maybe not for my GYN, but he wasn't admitting anything! I was immediately referred to a Regional Cancer Centre and the GYN/ONC made the decision from the D&C results and a quick internal to do a total laparoscopically-assisted vaginal hysterectomy plus sample lymph nodes. From my research, I had already decided that the more parts they took, the less chance of recurrance - nothing was mentioned about prolapses. I have also always had clear paps.

I just know that I was ready for radical surgery and was relieved when the doc said that was his plan. I was out of the "castle" the day after surgery and am now finally feeling normal. I make sure I do my Kegels regularly and have no issues with incontinence.

I just wanted the alien outta there and was grateful to have fine doctors who listened. In your situation, I think you're doing the right thing to get another opinion from an oncologist.

Best wishes.....
Unread 12-23-2005, 05:23 AM
Older women & hyst

I am 48 years old and I was pre menopause when I was diagnosed with cervical pre cancer from a D&C I had back in early august of this year.
I also had a small cyst o my right ovary.

I decided that the best thing for me, given my age was to have a TVH and my ovarys removed since they were not functioning anymore.

Since I was through having Little ones, i wanted everything gone that might later cause me problems later on in life.
I also had a buildup of tissue on my uterus.

My surgery went very well but she was unable to remove my left ovary because it was basically stuck to me.

My surgery took 45 minutes and It was all over.
The pathology report showed I had Adenomyisis, which they didnt know I had before.

my recovery has been very very good, and I will be 6 weeks post op on monday.

For me, I am very happy to have several less body parts to worry about and the sex has been great too !

You have to do what you feel is best for you. I was doubtful at first and had many questions. This site helped me work thru my decisions.

I wish the best for you,
Unread 12-23-2005, 09:17 AM
Older women & hyst

I'm sorry that you're gyn appears to be insensitive to your concerns. I think it's fabulous that you're being pro-active and seeking out another opinion on this matter. A gyn/onc is the expert when it comes to these types of issues, and they should definitely be consulted if cancer is known or suspected.

You might also like to check out our Cancer Concerns forum. You might be able to get some additional information on sarcoma over there.

If, for some reason, the gyn/onc is also concerned about about sarcoma (and I really hope that's not the case), you might also consider looking for a sarcoma specialist. There are 3 or 4 really good facilities in the U.S.

Good luck! I hope you are able to get answers to all of your questions and that you are comfortable with whatever decisions are made regarding your future treatment. Let us know how things go with your gyn/onc appointment!

Unread 12-23-2005, 10:37 AM
Older women & hyst

You are such a smart lady for going for a second opinion! I hope the second doctor has better communication skills than the first one! Best wishes in your quest for information.
Unread 12-23-2005, 12:12 PM
Older women & hyst

I was 51 when told I needed a hysterectomy. It all came very suddenly and was such a shock. I was fortunate to have been directed to a great ob/gyn who laid out all my options and who basically allowed me to choose. My doctor felt that since my cervix was healthy it should definitely stay for reasons of pelvic floor support, bladder control, and sex. I'm very happy with the results of my LSH and would recommend that procedure (if you are a candidate for it) over the others. You can't put back healthy organs. I hope you get a second opinion. Best of luck.

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