Anyone have uterus removed due to..

wifeandmomofone

extreme pain from endometriosis?

My doctor says I have external (outside of uterus) and internal endometriosis and he can 'clean' the external (surgically) and see how i feel, but if the pain persists then the only way to get rid of it is to remove the uterus. He would leave the ovaries so I wouldn't go into menopause.

I am 40 which i think makes a difference.

We have already decided (before this) to not have anymore kids, but in some way I feel 'attached' to my uterus and not sure about removing it. Maybe silly I know.

If anyone has any experience could you please share?

Thanks so much. I am agonizing a bit over what to do.

MrsDB

Not for those reasons, but my mom and my MIL both had hysterectomies. My moms was more complicated, they had to build a "shelf" basically to hold her bladder. My MIL was pretty simple, textbook, no complications. My MIL laid on the couch for like a month. My mom cooked thanksgiving dinner less than a week later. Their recoveries were completely different. I don't know if my mom is just "tougher" or if my MIL was genuinely in more pain or what. Both did go through menopause with the removals, they had complete hysterectomies.  I remember my mom checked in on a message board a bit, i think it was called Hyster Sisters or something kinda funny like that, I'm sure you can find a whole lot of information on there. 

MrsDB

http://www.hystersisters.com/vb2/

wifeandmomofone

thank you! I will check this out

tara07733

My 50 y.o. aunt had this done just this past november for the same reason. Her endometriosis was so bad that the tissue began attaching to other organs so she had no other options. Add to this that my mom, her sister, had a hysterectomy due to early stage cancer so the deal was sealed. Her surgery went without an issues but her recovery took quite a few weeks. She's a few months out from the procedure and is doing well. She healed fine and has been back at work since right after the new year. As an aside, a family friend had some special new surgery for hysterectomy a week after my aunt and she was out and about the 2nd week. It was amazing to see. She went to some hospital in morristown.

LauandJohn07

Yes, I had a partial hysterectemy, left an ovary (I had an ovary removed years ago), they removed my cervix and uterus. I had extreme pain from endometriosis, it was hard for me to function, I also had it in my abdominal wall and I bled heavily.

My gyno did a traditional c-section to make sure she could clean everything out. I was in the hospital for two days and was home from work for 7 weeks. Pain sucked for the first few days, then it was tolerable just uncomfortable. After the 4th day I didn't need to take any pain medication. The most annoying / uncomfortable part was my bladder, being catherized sucked and it felt like I was incontinent had a bladder infection for a few days, but that all went away.

I didn't go into menopause even with one ovary. I feel awesome, no more pain and I don't miss my period at all. I highly recommend the surgery. BTW I am 36 and have no children.

Lora73

I am currently 38 (partial hysterectomy at 36), i have three children 16, 5 and 2.5....My cervix was literally falling out of me...We were done with children so instead of having something hold up my cervix and everything above it my doctor and I chose to have a partial hysterectomy. I do not regret it.  Are you going to have thoughts about not having the choice to have anymore, maybe....For me it was best choice...I still have my eggs so no menopause (yet) and I no longer have a period...Good luck...you can pm me if you have questions.

ghl

I have stage 4 endometriosis and will be considering this. I discussed it with my Ob but he advised that since endo is influenced by estrogen, he would also remove the ovaries. We're trying to have one more child before I go through a hysterectomy but trying to control the pain with pain meds isn't cutting it, and BCP is not an option for me because of clot risk. Lupron kept it at bay for 6 months but not the longterm we had hoped for. To beh onest, I'm surprised if it's endometriosis that your doctor is considering leaving the ovaries since it won't keep lesion/adhesions from growing and worsening elsewhere in the pelvic cavity. I don't know how extensive your case was - I have adhesions that they couldn't remove without risk of perforating the bowel.

Another related condition is adenomyosis, which a friend of mine went through. It was endometrial tissue in the interior of the uterine muscle. it wasn't affected by estrogen, but caused pain and perpetual bleeding. She ended up having a hysterectomy as the only real treatment option for the extent of endometrial lesions she had. She kept her ovaries. It was done laparoscopically, and she was out from work for 5 weeks. The first week or so for her in recovery was painful she said but she was fine within a couple weeks.

MissFirefly

Hi there,

I don't have much for advice but I just wanted to say that I know what you mean about not knowing what to do and knowing I'll "miss" my uterus and cervix

I have a pretty large fibroid that has just started causing me heavy bleeding this past month-no other pain or symptoms.  At my initial visit to the doctor she said we could just watch and wait (that scares me because what if it's growing quickly and it is the 1% kind that's cancerous) or we could try a surgery to just remove the fibroid-but this might not be possible because of it's size (6cm) or I could have a total hysterectomy (leaving my ovaries).

I'm concerned about sex after hysterectomy..we have a great sex life (done having children but he has a vasectomy so pregnancy isn't a concern) and I don't want to mess with it, ya know?  I've never had painful sex and I've been lucky enough to be able to have "easy??" and multiple orgasms.  I just can't imagine all that will be the same after my uterus and cervix are gone.  Ugh.  Plus, and I know it's something I might just need to get over..but I don't know that I'll feel like a "whole" woman without them.  I'm 39 and not ready to feel so removed from the reproductive world.  I have a six year old daughter and my fiance has 3 teen girls.  ...we still like the idea of an "oops" baby, however rare that would be, as his vasectomy was 10 years ago.  

Anyway, this thread is helpful.  Hope everything turned out well..