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Should I stand firm for what I want? Should I stand firm for what I want?

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Unread 12-07-2011, 01:44 AM
Should I stand firm for what I want?

Confused and Frustrated seems to sum it all up.

2 weeks ago I went in for an ablation. Long story short, it didn't work due to my unusual anatomy. They tried all sorts of different techniques and instruments and still had no success. My amazing doc even called in specialists during the procedure.

Now my only option is a hysterectomy. I have mixed feelings about it. I'm tired of being sick all of the time. I'm tired of hurting all of the time. I'm tired of worrying about what I can wear, where I can sit, & how long I can stay out at normal functions w/o having 'problems'. I look forward to being healthy.

I also worry about what a hysterectomy will mean for my 'private time' life. I worry about that more than anything else.

My doc wanted to do a vaginal hysterectomy but I want to keep my cervix. There is no medical reason for it to be removed & I really want to keep it. After taking a strong stand on the issue, my doc finally relented and agreed to do a laparoscopic supracervical. But now it looks like she won't be able to do it that way and is still pushing for a vaginal. I REALLY want to keep my cervix. Even if that means an abdominal incision & a longer recovery time.

My doc is great. I completely trust her, but I also know what I want for my body. But... I'm also tired. I just want the surgery to be over and done with so I can start on my road to health.

My insurance is covering my surgery, no matter what kind it is. I don't have anywhere I have to be for the next couple of months so recovery isn't a problem.

Should I give in and go the 'vagina' path and lose something that means a lot to me, or stick to my heart and stand my ground about the subtotal hysterectomy???

Why can't this be easy? See, Confused AND Frustrated

I have had 2nd opinions, 3rd, 4th, 5th... they all say the same thing, the uterus needs to come out.
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Unread 12-07-2011, 05:40 AM
Re: Should I stand firm for what I want?

I don't understand why she is pushing to take your cervix if there are no issues with it. I think you should stand firm with your decision about your body. If your doctor is unskilled at the procedure you need or some other reason not comfortable doing it, maybe one of the doctors who gave you another opinion would be better suited to perform your surgery. In the end, it is your body and your decision. As noted, if there is no medical reason to remove your cervix and you want to keep it, you should. Don't let her pressure you into doing something with your body that you do not want. It sounds un-ethical to me for a doctor to even try to push you like that. {{{hugs}}}
Unread 12-07-2011, 06:18 AM
Re: Should I stand firm for what I want?

As someone who had endometriosis, and who also questioned their doctor's preference of removing the cervix, I would like to point out that retaining your cervix means a large chance of having mini periods.
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Unread 12-07-2011, 06:21 AM
Re: Should I stand firm for what I want?

Why has there been no mention of doing a laparascopic surgery? Three or four tiny incisions...
Unread 12-07-2011, 06:31 AM
Re: Should I stand firm for what I want?

She did mention a laparascopic surgery, but that isn't a viable option for everyone. She said her doctor was unable to do it that way. It probably has something to do with what is suspected of affecting her, the fluid, the size of her organs... There are many reasons why laparascopic surgeries just sometimes aren't an option.
Unread 12-07-2011, 11:28 AM
Re: Should I stand firm for what I want?

If you want to keep your cervix and there is no medical reason to remove it, then by all means, insist on keeping it. It's your body.

In addition to my extreme fibroids, I had abnormal pap results, so my cervix went. BUT - even if I had elected to keep it, I'm not sure it would have been possible because of the location of my fibroids - 2 were attached at the junction of the uterus to the cervix and caused my doctor a bit of a problem - she had to perform a myomectomy first in order to do the hyster.
Unread 12-07-2011, 12:23 PM
Re: Should I stand firm for what I want?

Why exactly are you wanting to keep your cervix? Why does your doctor feel you shouldn't? Could it have anything to do with your unusual anatomy that prevented the ablation or your diagnosis?

Keep in mind, the cervix is not a separate organ. It is the neck of the uterus. Thus, whatever is affecting the top of the uterus can also affect the bottom. There are actually many doctors who feel that if any part of the uterus needs to be removed, it all should be since it is one complete organ.

If you and your doctor are not on the same page, I would suggest that you get another surgeon. If things don't go as planned in OR, you will always have doubts and regrets.

That said, my entire uterus had to be removed and I haven't missed one bit of it since its departure 11 years ago.

Unread 12-07-2011, 01:08 PM
Re: Should I stand firm for what I want?

My surgeon wanted to take out my cervix. I had mentioned a while back that I wanted to keep it if there was no reason to take it out. Well, she forgot. When I went to preop she had me scheduled for a LVH. I have a big belief that if something works fine then it should stay. She wasn't thrilled but she changed my surgery to LSH. The one thing she did say is it will take longer so maybe that is what the issue is.

I believe that it's my body and I should get what I want unless it is not possible, then I should be told why it isn't. At this point no one has told me why my cervix should be removed except that I may have mini periods (she is cauterizing) and I'll still need a pap. Well, if I didn't have fibroids I'd still need the pap and still have periods so why is this a problem? As long as the periods don't cause massive flooding and anemia the it's ok.
Unread 12-07-2011, 01:13 PM
Re: Should I stand firm for what I want?

Thanks so much for all of the replies. It helps to know I'm not alone. I do have plenty of family that are very supportive but just don't understand the 'personal' stuff.

I'm having a hysterectomy for severe bleeding and pain. It has been this way from the beginning (around age 12). 23-25 days of bleeding. 10-15 in bed hurting so bad I can't get up except for the diarrhea & vomiting (due to pain). I'm 34 now so this has been a fairly long, painful road.

There is no chance of HPV. I've only been with my husband and he with me. No family history of cervical cancer.

All of that being said, it comes down to sex. (Sound shallow? My family seems to think so...) I know that I will be giving up uterine orgasms. No uterus=no uterine orgasms. I know these are painful for some people but for me they have always been the opposite. Often actually taking the pain away for at least a half hour. (What a relief!) I'm sad to be losing this. If they take the cervix, there is a chance of it damaging the nerves at my G-Spot which are right there at the top of the vagina & base of the cervix. Also, removal of the cervix will shorten the length of my vagina. Not a lot, I know, & over time it will stretch, I know... but length is an issue for us.

I've talked to my mother-in-law (vaginal hysterectomy), aunties (1 vaginal hysterectomy, 1 abdominal). All say it had no affect on their sex lives, none had ever experienced a uterine "O" that they were aware of. (Don't know what they were missing??? Could it be that they had only had vaginal &/or clitoral "O"?) They all told me "sex isn't everything". Of course this is true! There is so much in life. But... (And I know some of you might be thinking,"how can she worry about sex when she is bleeding & in pain all of the time?" Often the only time I'm not hurting is when I'm with my husband this way.)

So, I talked to my best friend/husband. He has been soooo supportive through all of this. (All of this: we met at 12 years old, courted for 5.5 years, married at 18- still virgins, watching me be in pain the whole way.) We are intimate usually once a day. Often more than that. We are compatible in this area. It is special to us physically and even more so emotionally. He assures me that no matter what, it will be ok. That is love. He just wants me healthy. But I'm afraid to lose something beautiful.

I feel like I will already be giving up so much, no more 'deep uterine "O's". I want to be selfish with this. I want to get rid of all of the bad (pain, bleeding, embarrassment) and keep all of the 'Great'.

None of the women I've talked to seem to understand. My husband understands but is doesn't know what to say or do to make me feel better about this. (He has resorted to holding me while I worry and cry.)

I just feel so lost right now.
Unread 12-07-2011, 01:30 PM
Re: Should I stand firm for what I want?

I agree with Weiser, if you and your DR aren't on the same page you need a new DR.

I had gone to the same GYN for years, eventually became unhappy with her plan of action for my fibroids. Decided to get a second opinion. My second opinion DR and I just clicked. Somehow I knew her plan of action was the right one. When I had doubts right before surgery and put in a call to her office she called me personally to discuss and ultimately altered the original action plan. That alteration was to keep my cervix. I just had my 6 month check up and both my DR and I are happy with the outcome of my surgery.

There will be no "undoing' of this surgery. If you are unsure, please do not proceed until you are!

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