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  #1  
Unread 08-04-2005, 12:37 AM
Help. Opinions Needed

Hello. I am so glad that I found this web site. I hope that it will help me find the information that I seek. I turned 35 the end of July. On July 1st, I had a D and C done because of a severe bleeding problem I had been having most months for about 16 months. At that time, a polyp was removed and sent for biopsy. The lab came back stating I had low grade Adenocarcinoma of the Endometrium. However, because my age and past medical history didn’t show any reason for me to have this, my doctor had it sent to the Mayo Clinic here in Scottsdale to get a second opinion.
The diagnosis was then changed to Atypical Polypoid Adenomyoma. This is a rare and benign tumor that may be clinically and histologically mistaken for a malignancy. There apparently is a chance of it turning into a carcinoma and, therefore, a hysterectomy is still the recommended treatment. The alternative is to be checked and biopsied on a regular basis, and I suppose that my bleeding problem would once again become a concern.
I would still have my ovaries in this scenario which made me feel a little better at first, but I now understand there may be a question about problems with blood flow in order to keep the ovaries healthy and working. Beyond that, though, I am extremely worried about the side effects associated with hysterectomies, especially sexual and weight issues.
Of course, my doctor says no big deal, but I don’t believe her. I’m specifically concerned about vaginal dryness, lack of sexual drive, inability or extreme difficulty obtaining orgasm, and weight gain and/or inability to lose weight. I have learned from the small amount of reading I have done on this site – and I know I’ve only touched the tip of the iceberg so to speak – that not only are my fears well founded, but I may have to fear emotional side effects as well.
There a couple of things I would like to know from anybody who can and wishes to help in my quest for information. First, has anybody been diagnosed with what I apparently have, and what was done for treatment? Second, has anybody been pleasantly surprised by the lack of sexual side effects after their hysterectomy? Finally, how many of you ladies would have chosen or did choose a hysterectomy on the mere chance that you may one day get cancer?
I am struggling with the decision, and the most common reply I get to my fears is, “Why take the chance?” I’m wondering why not take the chance? A very large part of me doesn’t want to have the procedure done until it does turn into cancer. However, I have no intention of being stupid about it. My dad’s sister past away from ovarian cancer, and I know, especially after witnessing that, that it is not worth my life. Any information that anybody could give me would be greatly appreciated. Thank you for your time.
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  #2  
Unread 08-04-2005, 07:49 AM
Help. Opinions Needed

Hi AzBoo,
I didn't have your same situation, but wonder if your dr said what was causing your bleeding? This can make a difference in how you might want to procede. Has your dr mentioned the possibility of trying an endometrial ablation? I tried the D&C, then the alblation before I had to have the hyst and I was 51. I would for sure have tried it if I had been 35. Just a thought for you.
I know there are a lot of ladies on here who have had their surgeries because of the possibility of one day getting cancer. Kathy Kelly ( the owner of this site is one of them). I hope some will see your post and you can get their perspectives first hand.
Just for the record I came through my surgery with no bad sexual results,you are wise to study up and know what the risks are. I wish you well.
's, Rita
  #3  
Unread 08-05-2005, 12:37 AM
To Rita

Thanx for the quick reply, Rita. My bleeding was caused by the polyp/tumor-or whatever it should be called. The rest of my ueterus was healthy. I did get to see the photos, and it looked fine to me, but what would I know, really? She wasn't able to remove the whole thing. She said that there was still a nub left, and said that it more than likely would grow back. She never did say anything about an endometrial ablation, and I'll have to look to see even what that is exactly. It doesn't sound like it's hormone related, so I'm not sure why she wouldn't have mentioned it. I do know that she thinks anything hormone related would be bad, and has limited me to non-hormonal birth control methods. At this point, I am scheduled to see her again in about four months, and I believe we will be doing everything we just did in July to check how things are.
I am curious weather you still have your cervix. I'm not sure what everything stands for, so I don't know what TVH means. My guess would be total vaginal hysterectomy, so I would guess no cervix. My doctor said that the cervix wasn't left in anymore because of complications, but it kinda sounds like from reading other posts that maybe that may not be true. Do you know of any differences in cervix vs no cervix? Maybe it doesn't matter. Thanx again for the reply.
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  #4  
Unread 08-05-2005, 08:16 AM
Help. Opinions Needed

Hi Azboo,
When they do an ablation they burn the uterine lining. This stops the accumulation of blood each month and usually will stop the flow or at least greatly diminish it. I have read where many women do still have somewhat of a period. It isn't a hormonal treatment, but you wouldn't want to do it if you want to have more children. It's one alternative to the hyst that allows you to keep your organs and does work for many women. I think my dr told me it was 90% affective. There are also several different methods. I had the Novasure done. If this is an option for you you might want to research them. It does seem that different drs will specialize in certain ones and that is what they offer.
I didn't keep my cervix. I had been bleeding for so long that the thought of possibly having any more bleeding (since you can still have a miniperiod when you keep your cervix) was more than I could stand.
I was nervous about it too. I can honestly say I notice no difference. One thing I will say, is that a lot of what you read on here are reports of women who aren't fully healed. It can take some time for you to get back to the place you were before a hyst. We're all different, but many women are looking at that 6 week mark to be a magical, all-healed number, and it is really only a minimum for most. I don't say that to discourage anyone, but I do think its best to be realistic with yourself. You will have less disappointment.
One last thought, many women do keep their cervix and do just fine. I wouldn't let your dr take it as a matter of routine if you really want to keep it.
Hope some of this helps.

's, Rita
  #5  
Unread 08-06-2005, 12:52 AM
Thank you, Rita

I can't begin to tell you how much I needed to hear that most of the post were from women who haven't fully adjusted and/or healed after their surgery. It certainly put things in better perspective for me, and I'm thankful for that. Even though I have the feeling it won't be an option, I'm going to ask my doctor about the ablation. The reason she didn't burn the nub out before was because it would destroy the tissue and make it impossible to biopsy. With the fear of this actually turning to cancer, she'll probably want to make sure the tissue is testable. Which it still may be with this procedure, so I'm going to make sure. It actually sounds pretty good to me. Thank you so much for your time and insight. It is very much appreciated.
  #6  
Unread 08-06-2005, 08:33 AM
Help. Opinions Needed

Hi

I didn't keep my cervix since it was prolapsed out of my vagina and I haven't noticed anything different. I have two sisters who kept their ovaries and they are doing fine, natural menopause seems the same for them. I couldn't keep mine and I would suggest keeping yours because the dryness is awful, that has been the worst for me. I mean dryness everywhere. But we are all different so you can't look at everyone and say that will be me. Most women do fine with their ovaries still working. I would certainly choose living over the alternatives. You can't turn back the clock.

It is a scarey decision to make, so do your research so when you make your choice YOU will be happy with it.

Good luck and keep us updated.
  #7  
Unread 08-08-2005, 11:56 AM
Help. Opinions Needed

I've been posting on the pre-op site about keeping the cervix- you can look at this thread:

https://www.hystersisters.com/vb2/sho...d.php?t=215892

or click on my name above and see previous posts to see more about keeping the cervix.

I've read that it is the cervix that provides vaginal lubrication, and sexual feeling for women during sex. You may want to look at my previous posts to make a more informed judgement about whether to keep your cervix or not.

-Torrie
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