The month of March is Endometriosis Awareness Month.
I am one of the millions of women in the world who has endometriosis. A year and a half ago, I had a hysterectomy. I wasn’t given much of a choice in the matter due to the fact that I had stage 4 endometriosis as well as adenomyosis of the uterus. Aside from one ovary, all of my reproductive organs were removed via an open abdominal incision. The endometrial tissue that was growing on the inside of my pelvis, intestines, bladder and bowel was scraped and burned off with the hopes of it never returning.
Following the hysterectomy, I was finally able to experience freedom from the pain of endometriosis that had plagued me for years.
The recovery period following my hysterectomy was one of the toughest struggles I have ever experienced. The surgery was invasive and there were complications. Worst of all, neither my doctor nor I predicted that the outcome would be nearly as bad as it was. We were blindsided with a “worst case scenario.” Being unprepared for a hysterectomy made the recovery difficult, both physically and emotionally.
In The Hospital
I gripped my morphine drip with an iron fist. I don’t remember much in those first 48 hours, aside from getting the bad news. Since I did not go into the hospital on that Friday morning expecting to come out of it with a hysterectomy and a 5 day hospital stay, I was not in the least bit prepared. I hadn’t packed a change of clothes, a toothbrush or a phone charger. Even though my husband did his best to bring me what I needed, the loss of control made me feel anxious and on edge the entire time.
I had lost a lot of blood during the surgery, but I wasn’t given a transfusion until three days later. Perhaps it was because they wanted to see if I would recover without one, which I didn’t. I was weak, dizzy and my breathing was even faint due to a lack of oxygen in my blood. At night, I would wake up gasping for air. After the blood transfusion I began to feel a lot better.
They finally removed the catheter but peeing was next to impossible. A tiny trickle came out at best. Getting out of bed to go the bathroom and back again took every ounce of strength I had. By that evening, I was in so much pain that I couldn’t make it to the bathroom or pee at all and the nurses had to use a straight catheter to empty my bladder. Two straight catheters later, they decided to put the Foley catheter back in for the night.
I was supposed to go home. I was somewhat mobile, able to pee on my own, made a bowel movement, had been off of morphine for 24 hours and even managed to take a shower. They replaced the morphine with T3’s for pain management instead. But later that afternoon, I began to feel dizzy, weak, nauseated and had shortness of breath in addition to a drop in blood pressure. Turns out I had a reaction to the codeine in the T3’s. I stayed an extra night to be on the safe side.
I finally got discharged from the hospital five days after my sudden hysterectomy. It was a two hour drive home and my husband and sister had padded the seat in our vehicle with pillows and blankets so that I would be as comfortable as possible. The nurses gave me a dose of painkillers right before wheeling me out and buckling me in. I vaguely remember the drive but it felt good to be home.
The First Two Weeks
At the hospital I was given Heparin shots regularly, but now I was supposed to get up out of bed and walk around as much as possible to avoid getting a blood clot. Since we live in a split-level house I was mostly contained to the upper level, so I did laps around my bed and in the hallway.
The only way I was truly comfortable was with a pillow under my head, one under each of my arms, and one across my stomach which I had to apply pressure to anytime I tried to use my abdominal muscles (which is so much more than you realize).
They give you a few stool softeners in the hospital but you’ll need them for far longer. Since my bowel, bladder and intestines had all been “scraped” of endometrial tissue and adhesions, they too, were swollen and trying to heal. Going to bathroom was something I dreaded having to do.
Going up and down stairs was a task that I didn’t even tackle until the second week. You really don’t realize how painful it can be on your incision to take a step up or down. It pulls on the stitches and stretches everything from the inside. One step at a time, with slow movements and regular breaks was the only way to manage them.
Six Weeks Later
My grandmother had come to stay with us during my recovery period and she was an absolute blessing. She took care of the kids, cooked, cleaned and delivered my favorite foods and tea to my bedside on a regular basis. She, too, had a hysterectomy in her 30’s and so she knew the pain I was in and refused to let me lift a single finger.
So when the six week mark hit, I expected all this hysterectomy business to be behind me. But I was still in pain. It hurt to bend over, and even just to stand for any length of time. It still hurt to go to the bathroom and I was exhausted all day long even though I wasn’t doing anything. I was apparently well enough to drive but moving my foot from the gas pedal to the brake caused pain by my incision.
By this time, my grandmother returned home and it was just me and the kids, resuming our normal, everyday activities. My husband hated to see me in pain and was anxious for me to recover. He asked me every single day if I was doing better. I wasn’t. I was struggling so hard to get back into things. But I told him “yes” so that he wouldn’t worry. It took at least eight weeks before the pain finally ceased. It still hurt to lift or bend, but for the majority of the day, I didn’t think about it.
The Next Year
The Absence of Blood
If there is one major benefit to a hysterectomy for a woman in her 30’s, it’s the end of periods for good. Prior to my hysterectomy, I bled for 6 weeks straight. I started to get a rash from having to wear pads and tampons continuously for so long. But in the last year since, I haven’t had to think about a single drop of blood.
Believe it or not, it was something that I needed to get used to. For 20 years, I’ve had to worry about waking up to blood stained sheets or dealing with bloody messes all over the bathroom. I still find myself checking the toilet paper after I wipe for traces of blood, but there’s never any there.
Yes, my lonely solo ovary still ovulated. At least, I believe that it did, but I no longer had a cervix or menstrual cycle to help me determine for sure. Further research confirmed that symptoms of ovulation post hysterectomy were:
- pelvic pain (on the side of the remaining ovary)
- tender breasts
- PMS symptoms (mood swings, food cravings, headache, bloating)
Since that one ovary was still ovulating and producing estrogen, these symptoms did not stop post hysterectomy. But a sole ovary will only be able to hold down the fort for so long, so I have had to accept the fact that menopause will come to me sooner rather than later.
Many women express a decrease in their sex life following a hysterectomy. But not having to worry about getting pregnant actually made it all the more enticing for me. Even though I was still ovulating, I didn’t need to track my cycle or worry about what form of birth control to use. Although it took some time to accept the fact that I would never have another baby, part of me was relieved to never have to worry about any of the baby-making parts again.
A hysterectomy did provide me with a sense of freedom from endometriosis. For the first time, in a very long time, I enjoyed a summer with my family and was able to do all the things that I never could before. I could go camping or to the beach and not have to worry about changing a tampon in the middle of the woods. I had energy and was no longer in an obscene amount of pain so I could keep up with my kids for a change. I danced and swam and ran around and hiked and rode a bike. I was able to live my life, without pads or pills or a heat pack.
Among all my newfound freedom, however, there was a looming sense of emptiness. The lack of periods was a constant reminder of my traumatic experience. I hadn’t quite come to terms with the loss of my uterus yet. The more I thought about it, the more I felt empty, infertile and dried up. I would hear or see other women complain about having cramps and asking for a tampon and while I was glad those days were behind me, I also felt like less of a woman.
18 Month Update
A little over a month ago, I suddenly experienced a sharp pelvic pain. I followed up with a doctor who said it was likely caused by a small hernia along my incision and ordered me to rest for a few weeks. He also warned me that it could be caused by scar tissue and/or adhesions. If the pain persisted I was to come back for further tests.
Obviously, as a mother of three, trying to get enough rest was near impossible. I did my best to not bend, lift or strain myself but the pain was persistent. Within two weeks, it had spread across my entire pelvis and lower back… and it was all too familiar.
So now, 18 months post hysterectomy, I wait for more doctor’s appointments to find out if the endometriosis has returned.
Overall, my quality of life has improved since having the hysterectomy. At the time, it was traumatic and difficult to deal with. But even with the possibility of the endometriosis returning, I have no regrets. The hysterectomy gave me a chance at freedom, even if it was short lived.