Sarah from New York with her Hysterectomy Story

Type of Hysterectomy: Supra cervical partial robotic, uterus only
Age at surgery: 48
Location: NYC

It’s been a long path that we’ve traveled, me and my uterus. Very painful cramps, heavy clotting and bleeding since my 20’s. My mother had the same. I have had fibroids for years. Finally, after the bleeding took an epic turn when I lost a pint of blood in the course of 2 hours (think of diarrhea) I realized it was time and I needed to do something. I had asked my GYN about UAE but she was not a fan (in my 30’s), but after I moved and had a new GYN, she was completely on board and we moved ahead and I finally found time in my crazy busy life to have the procedure. Our goal was to bridge my then 41 years till menopause.

Well, the procedure was a great success. Although I still had bad cramps, and the very large fibroid was always a source of intermittent pain, the bleeding was manageable and more “normal” with no clots for years. But the pain was actually getting worse and the bleeding was irratic. I would think my period was finished and would have a huge gush a day or two later. This was just unacceptable. From the very first period when I was 13, I had used tampons. Now I had to wear pads almost all the time. And if that wasn’t bad enough, I now was having pain 3 out of the 4 weeks of my cycle- always on the side of the biggest fibroid. Yeah, my cycle was shorter, a little unpredictable, but it was the pain and bleeding that I just couldn’t manage to accept.

I was just not ready for a hysterectomy and my GYN was agreeable when I asked if we could try an ablation. That went OK, and although it was a little helpful with the bleeding, I couldn’t believe that my pain was just almost constant. It wasn’t changing my activity, but it was just miserable.
I was offered a lap assisted vaginal hysterectomy. I decided to get a second opinion at a major medical center even though I really liked my GYN. I was made an offer I couldn’t refuse- total robotic removal of just my uterus, leaving my cervix and my ovaries. That would leave me as intact as possible. Initially we were going to morcellate, but that part of the procedure became unacceptable. On the morning of my surgery my surgeon told me he would cut up mu uterus in a bag and take it out in pieces.

I had general anesthesia. The surgery took a bit longer than expected due to the way they removed my uterus. An 8am case that took about 2.5 hours, I woke groggy but comfortable. The plan was that I could stay overnight or leave same day as I saw fit. After a while I realized that my bladder was very full even though I did not have the urge to pee. I tried a few times, bedpan, toilet, but could not get more than a few drops out. My bladder had been so tiny for so long that I was shocked when they got 800cc out! It took me about 3 hours to feel like I could get more than a few drops out. But the up and down to the bathroom down the hall helped get me out of bed and ultimately ready to go home. I left the hospital by 5 pm.

I had not expected the difficulty urinating. Yeah, passing gas and stool was not a delight in the first week, but I would have to concentrate on the sensation of bladder fullness to empty my bladder as the urge to pee took days to come back. And yes, go crazy with stool softness- they will be your best friend. I was grateful that I had a pre op clean out as it gave me a few days before I had to worry about stooling, and I kept a light diet for the first week which helped.
I expected that I would be up and walking around the block within 1-2 days. That did not happen. My belly was sore (and of course swollen). I could make it to the bathroom 20 feet away the first night. I could make it down the stairs the next day. It was difficult to sit in a chair. I don’t do well on narcotics, so I took ibuprofen and long acting acetaminophen which was adequate after about 18-24 hours of the oxycodone.

My recovery seemed to go in little spurts. On the 4th day, I was able to sit in a cafe for lunch, but a little uncomfortable. 2days later my friend drove us to the movies and lunch and I was OK to walk around a bit without discomfort. On the 8th day I danced at a party for 1 song, but sitting was still not the most comfortable thing and I fatigued quickly. By the 10th day, I walked 7 miles around my neighborhood. Yes, 7 miles. I was comfortably driving by 11 days and at 2 weeks I was back at work. It took longer for the swelling to recede but I felt that the more active I was, the better it got. I used a spanx like product (spandex tummy control) that went all the way up to my rib cage which I used for the first 3 weeks which was very very helpful.

I was cleared for intercourse after my 11 day post op. I waited till about 2.5 weeks, very carefully (but 100% successfully)! It took a while for me to relax and not be terrified, but I think it was mostly my anxiety because it wasn’t until we went away for a weekend that I relaxed and things just popped back to normal.

I tracked my cycle (discharge, mood, appetite) at first. After about 4 cycles I lost track. I don’t know where I am in my cycle. Sometimes I have a little clue, but that’s it. I finally deleted my P-tracker after about 9 months.

It was the best decision I made. I haven’t had a drop of blood since the single drop in post op. I keep finding tampons stashed in luggage, pocket books, jackets (ski, etc) and it just highlights how dominated my life was. The biopsy showed extensive adenomyosis, which meant that there was really nothing else I could have done (and the MRI did not show that).

Best decision ever. I am getting my first CBC next month after the surgery for my annual visit and I can’t wait to see how “not anemic” I am!

Everybody who considers a hysterectomy is not doing so for the same reason, not at the same age. It is an extremely personal and unique decision. There are more negative stories on the internet because when things go really well, you are busy living life, not seeking support on the Internet. This site is a great source for information and support, but don’t forget to read the success stories too!!! Don’t let fear guide you. Find a surgeon that listens and don’t stop looking even if it take a few different visits. Go to a great Hospital. I wish I had known how well this was going to go- I could have eliminated 10 years of misery. But I don’t regret how I arrived at being certain it was the right decision.

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