dVH/RALH: Just Found out Hysterectomy needed due to severe Endo

Hey sisters. So nice to see there is a support group that might ease my fears since no one I know is going through what I have been for forever.
I have been battling Endometriosis and fibroids since puberty it seems. Thankfully I have been blessed with two beautiful, healthy boys, but my husband and I were by no means done having kids. We wanted to try for #3, but now is not the time and the pain has gotten to severe for me to go on. My Dr, my husband and I all decided it was time for a hysterectomy, which was a tough pill to swallow since I am only 32 and wasn't done having children.
I know I need to count my blessings and be thankful for what I have but it is still hard to wrap my head around since I loved being pregnant, feeling that baby move inside me and knowing I'll never feel it again or be able to breastfeed ever again.
My Dr will be doing the robotic assisted surgery and is taking out my uterus, both fallopian tubes, my left ovary since this one causes me the most pain and my cervix. He is leaving in the right ovary so I don't go into menopause.
I have heard from a couple people to not have him take the cervix due to bladder issues. Has anyone had issues from this? Is this something I should bring up with him? He was taking it out for decreased risk of cervical cancer. But if it will cause me bladder issues that is something to think about too.
Sorry for the long post but I am super nervous, very emotional, and it's all still extremely fresh, so my head is still whirling. Any words of encouragement, virtual hugs, and positive experiences would be appreciated

I don't have any advice, but am in a similar spot! My TVH is scheduled for 3/29, I have my pre op appointment with my dr in a few hours. I am only 29. I was diagnosed with endo and pcos 5 years ago, after infertility problems. We were blessed with two children when I was very young (at 17 before meeting hubby then we had one together when I was 19). We weren't done either, tried for 6 years to have another child. 2 years ago we accepted God must have other plans and I agreed to birth control to try to control my crazy cycles. I was in seasonique which worked well for awhile. January 18 my period showed up (3 weeks early) and has never stopped (55 days). At times I'm in the bathroom every 15/20 minutes passing big clots, most times its heavier then a "normal" period, I'm always in pain and the SIS showed both ovaries have cysts. (We figured as much). Will know more today as to if my dr thinks he can save my ovaries or not. Just wanted to tell you that you're not alone, I understand!

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Originally Posted by Nikkib2016 I don't have any advice, but am in a similar spot! My TVH is scheduled for 3/29, I have my pre op appointment with my dr in a few hours. I am only 29. I was diagnosed with endo and pcos 5 years ago, after infertility problems. We were blessed with two children when I was very young (at 17 before meeting hubby then we had one together when I was 19). We weren't done either, tried for 6 years to have another child. 2 years ago we accepted God must have other plans and I agreed to birth control to try to control my crazy cycles. I was in seasonique which worked well for awhile. January 18 my period showed up (3 weeks early) and has never stopped (55 days). At times I'm in the bathroom every 15/20 minutes passing big clots, most times its heavier then a "normal" period, I'm always in pain and the SIS showed both ovaries have cysts. (We figured as much). Will know more today as to if my dr thinks he can save my ovaries or not. Just wanted to tell you that you're not alone, I understand!

Thanks for the reply. How'd your appointment go?

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Originally Posted by jenflipflop Thanks for the reply. How'd your appointment go?

It went well and he walked me through the procedure. I'm a nervous wreck and still have until the 29th. DH brought me and the kids to a cabin in the mountains for the weekend to try to get me to relax (: My doctor is confident he will be able to leave my ovaries, thankfully! How are you hanging in there?

Hi jenflipflop,

It does sound like you are having a rough go of it. I'm just going to put a few things out there in case you didn't know. First, hysterectomy, with or without ovary removal is not a cure for endometriosis. The closest thing we have to a cure is excision surgery with an endometriosis specialist. An endo specialist works exclusively with women who have endometriosis, and they are specifically trained to carefully look for and excise each and every endometrial implant. Other doctors like ob/gyns often miss implants because they are not trained specifically how to look for and recognize them. We have had many members return after hysterectomy who still have symptoms from endo that was left behind on the body surfaces. I understand you really want to get on with life and enjoy living pain free, but a hysterectomy may not give you that. It should give you a break from the bleeding, and pain caused by endo on the outside surface of your uterus, but if the other implants are not excised, you may lose your uterus and still have pain. My best suggestion is to make an appointment to see an endometriosis specialist. There are not that many, and you may have to travel, but it may very well be worth it to you. Chances are that it may be possible to save your uterus and your fertility (no guarantees, but an endo specialist would be your best bet). Hysterectomy is not the inevitable end for those of us with endometriosis. Here is a link to our endometriosis articles. They are short, well-researched, and easy to understand. You are your own best advocate, and the more you know about your diagnosis, the better.

Oh, to answer your questions about the cervix, I didn't have the option of keeping mine because it was peppered with endo and was very painful. I don't miss it at all. I have not had bladder problems because it's gone.

Keep asking questions.

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Originally Posted by Nikkib2016 It went well and he walked me through the procedure. I'm a nervous wreck and still have until the 29th. DH brought me and the kids to a cabin in the mountains for the weekend to try to get me to relax (: My doctor is confident he will be able to leave my ovaries, thankfully! How are you hanging in there?

Aww that sounds lovely, a weekend in the mountains. Enjoy the relaxation.
I'm doing okay. Tying to either keep my mind off it or educate myself more. Though when I do that I seem to get more depressed. I don't even have a set surgery date yet until the scheduler calls me. So I have a few months to sit and worry :/