Robotic hysterectomy with salpingo oophorectomy scheduled for 5/26

Hello,
I'm new here. I'll try to tell my story in a nutshell and would appreciate any and all feedback I may receive.

I am 39 and am an almost 12 yr breast cancer survivor. I was diagnosed at age 27, two months after giving birth to my 2nd child. At the time of my diagnosis, my 1st oncologist wanted to do an oopherectomy. I wasn't sure I was done having children and said no. Two years later, after moving, my 2nd oncologist wanted to do a total hysterectomy. Again, I was only 30 and unsure of my plans for children, plus, feared feeling menopausal the rest of my life. Due to divorce and other struggles, I went without proper check ups for about 8 yrs. The whole time my periods progressively got worse. Fast forward to April 1, 2016. I went to the doctor and discussed my heavy bleeding, anemia, flooding, clotting, painful periods and constant mental stress of worrying about recurrence and other cancers. She did my exam and immediately wanted to do an endometrial biopsy. She wasn't able to get through my cervix. So, she sent me for an ultrasound. Said she didn't want to force through without having an idea of what she was working with. US revealed 5 fibroids and endometrial lining that was 24 mm thick. There was one fibroid impeding entrance into cervix so she prescribed tablets that would soften cervix and planned to do another endometrial biopsy in her office. Again, she couldn't do it. Next step was D&C. From talking to people and researching, I've found that I seem to have many symptoms of endometriosis. D&C pathology showed no cancer or any other abnormalities, including endometriosis. That surprised me. I told my doctor I am still ready to remove everything as I can't do any other hormonal treatments for fibroids and I always have a chance of other cancers given my history. She agreed.

I spoke with my surgeon today and scheduled for next Thursday. She said I should be able to go home next day if I feel well enough but will still need 6 weeks recovery time. I've already made arrangements at home and work to have ample time to recover. I have little to no tolerance for pain. So, that's one of my biggest fears. I know this is a minimally invasive procedure but they emphasize how it's still MAJOR surgery. I also have had bladder surgery and 2 c-sections so she is a little concerned about potential scar tissue.

I guess, I'd just really appreciate any suggestions and/or encouragement you all may have to offer. Thanks!

Hi and welcome!! I can relate to the closed cervix. That and my uterus are completely sealed. US only showed one intramural fibroid. We aren't too sure what they are working with until they get in there, but endo is suspected. You are the day after mine, we should be on the same recovery thread!

Hi JujuMac to HysterSisters!

I am so glad you found this site! It sounds as if you have had quite the journey.

This is MAJOR SURGERY, no matter how they do it. You are having an important organ removed from your body. No matter how they enter your tummy, you will have much internal healing to do. I am glad you are taking 6 weeks off for recovery. It will take time.

Pain is different for everyone. Some have minimal pain, others have moderate pain, and still others have lots of pain. When you waki up from surgery, they will ask you how much pain you are in. You tell them and they will give you pain meds to match.

For me, I had a TAH BSO which is open abdominal surgery with everything removed. I was in moderately high pain. I was on morphine pump the first day, narcotics and Motrin for the next three days, and just Motrin for the next two weeks. The regimen controlled my pain.

You do need to prep your household for recovery, and will need help with cooking, cleaning, dishes, laundry, shopping, driving, etc. Can family or friends help you? Here are 10 Tips for Preparing for Your Hysterectomy.

I know this is such an overwhelming experience. We are here for you, and understand how you feel. Just know that you are not alone in this.

Thank you for your replies. I found forums like this very helpful through my breast cancer journey as well. I think I have everything pretty ready. I have a wonderful hubby ready to help. He'll be working from home as much as possible. And, once school ends for the year on 6/2, I'll my 11 and 14 yr olds here to help. Plus, my mother in law is prepared to help as much as needed.

I do have one lingering question that I'll post here and on an endometriosis thread. I've been doing a lot of research and talking with other women. I have many endo symptoms but my doctor hasn't said I have it, even after my D&C pathology came back. I've seen some stories of it being discovered during hysterectomy surgery. Is it possible they haven't seen it on my ultrasound and pathology but may find it during surgery?

Thanks again for your help and encouragement!

Hi JujuMac,

As for your endometriosis questions. Endometriosis only exists outside the uterus, so it wouldn't show in a D&C which only samples the inside of the uterus. As a matter of fact, endometriosis can only be definitively diagnosed by seeing it, like with a laparoscopy or other surgery like hysterectomy. Mine was found during my hysterectomy. It didn't show on ultrasound or MRI. So yes, it is possible that you could be diagnosed with endo during your hysterectomy. However, what you describe sounds more like --> adenomyosis to me, but I am not a doctor. I only mention it, and provide the link, so you can ask your doctor about it. If it is adenomyosis, then hysterectomy is a cure. If you do have endometriosis, then you will need a doctor (a specialist) who is trained in excision surgery to remove all the endometrial implants that may be on your bowel, appendix, bladder, or other body surfaces.

Here is an article about the difference between ---> endometriosis and adenomyosis and here is another about adenomyosis and pain.

I had adenomyosis AND endo. My adeno did not show up on u/s or MRI. It wasn't until pathology came back that I got that diagnosis. So even if your doctor doesn't see lesions indicative of adeno on the u/s, it doen't mean you don't have it. Again I urge you to talk to your doctor about it.

Elsie 1122,

Thanks so much for your response and great information. It's nice to know they may see it during surgery. Not that I WANT to have either condition, but I won't feel crazy for all the symptoms. I'm ready! It's going to be a long 3 days counting down.