Welcome, Mamma Crew! Today is Mamma Thursdays when it’s all about us! The mammas! Today is the second episode in the hysterectomy series.
If you listened to episode 6, you know about my long struggle with endometriosis and how it culminated with frozen pelvis. Frozen pelvis is synonymous with “End Stage Endometriosis” or “Terminal Endometriosis” in the pelvis. Being so ill is difficult even when you have the support and help of your family. By the time I was dealing with the end-stage of the disease we had moved across the country away from our support network. We had moved to Alpena, Michigan, colloquially known as the tip of the mitt. It is the utmost northern point of the lower Michigan peninsula. A very insular town in which most outsiders don’t last long. Locals really have a problem embracing outsiders so after living there for only 3 years, we had a lot of acquaintances but no friends. Actually, not much had changed 6 years later when we moved. So the reality was that everyone I could count on for help, or that I had been able to count on help from the past, was all the way back in California living their own busy lives. So it was a real crisis when I found out that the only solution to my frozen pelvis was a complex surgery.
However, this was hardly the only challenge I was facing. Unfortunately, at that point in the disease, I also had to face a lot of complications because the surgery would involve a wide excision of the nodular and infiltrative endometriosis involving the bowel, the rectum, and sigmoid colon. I was potentially facing another bowel resection, discoid excision, and shaving of lesions with nodulectomy were all possible surgical procedures. The bladder, the ureters on both sides, and the parametrium of the vaginal walls are always affected in the frozen pelvis syndrome, and thus surgery will involve these anatomical locations. It was a very delicate surgery with a higher level of risk than your typical hysterectomy. The potential for complications was high. In other words, a long hospital stay and a long recovery period.
After reviewing the local surgeons, I despaired at the butchery. Several women with more basic hysterectomies had serious complications as a result of trusting the only local surgeon. Indeed one of my students nearly bled out after a D&C and had to have an emergency hysterectomy. I just couldn’t take that type of risk. I had to find a qualified surgeon who had extensive experience with the complexities of endometriosis. This meant leaving home to travel south for 5 hours to be close to qualified doctors closer to the Detroit area. As a new patient, I also had to wait several months before I could even get an appointment just to interview the surgeon. So not surprisingly, it took nearly 6 months to find this medically unique and magical gynecological unicorn.
When I did find my unicorn, he was located in Chelsea, Michigan. This was four hours away from every comfort that my girls knew. I couldn’t even allow myself to think about the difficulty of that initial recovery stuck in a small hotel room. I mean, it was all we could afford at the time, stuck, as I said, in that small hotel room with two frustrated toddlers. However, I will forever be grateful to Dr. Douglas Portz, an obstetrician-gynecologist in Chelsea, Michigan, and my surgeon, for his kindness. On our very first meeting, he actually held my hand and told me that he was embarrassed about his profession. He felt that my doctors had let me down for a long time. It was the first time someone had apologized to me for the pain and misery I had endured for years. Not that it was his fault, but it was comforting. His kindness was very comforting. But he also told me some brutal truths. Laparoscopic surgery was not an option for me due to all of my abdominal surgeries. He would have to perform a laparotomy, a large skin incision over the bikini line which meant an even longer recovery period than expected. He said given the extensive damage I should expect 4 to 6 hours of surgery.
It was at this point that Dr. Portz hit me with another shocker. I was looking at a total abdominal hysterectomy with bilateral salpingo-oophorectomy. This meant that the surgery would remove my uterus, cervix, ovaries, and fallopian tubes. They were all severely damaged so I really had no option other than I could choose to keep my cervix. BUT, there was a big BUT here, given how severe my endometriosis was, there was a very strong likelihood I would have to have a second surgery to have it removed in less than a year to remove my cervix. However, if I chose to have it removed, there was a strong possibility I would never experience another vaginal orgasm in my life. Well isn’t that great!?!
My sex life might have been painful most of the time, but I did enjoy it the rare occasions in which it was not. So frankly, I was stunned! The magical solution to my painful misery might come at an expensive price. Why wasn’t there ever a real solution? It always seems that the doctors’ so-called solutions had a pitfall the size of the Grand Canyon. I’m not sure if the possibility was worse than once again knowing I truly had no choice in the matter. I was looking at my 8th, 7th, abdominal surgery. Recovery was getting harder with each passing year. The risks are increasing for me. The idea of another surgery was not an appealing one. I was simply going to have to take my chances if I lost the ability to orgasm (sighs). I was just going to have to live with it. Because frankly, at that point, I was hit with an even more daunting realization.
Children change everything! Every major surgery had been prior to my becoming a mother. So while I had been scared, it was just for myself. All the people in my life were adults. They loved me, but they didn’t need me. This time I had two toddlers who needed me. They might have been my world, but at that precise moment, I came to the realization that I was their world!
My style of parenting had always focused on nurturing strong connections with my girls. I had breastfed the girls for 18 months, 6 months short of my goal. Breastfeeding and work had been exhausting so it became my excuse to go sleep with them. And while it is true that I was exhausted by the end of the day between work and taking care of a home and two kids, but the reality was that I loved sleeping with them.
Kissing and holding them when they fussed, I enjoyed being attentive to their nighttime needs. Holding them and making them feel loved and secure. And there’s also the mundane everyday joys. Bathtime was great fun, singing and chasing them around the house, and then playing with them in the tub. My office was in their playroom because I enjoyed watching them and liked playing with them every chance I got. They knew I loved them with every breath I took and it’s no small exaggeration. No one — no one, I was certain, could do that for them but me. And, they certainly looked at me as though it were true.
I seriously considered holding off having the surgery for another couple of years until the girls were older. Perhaps it would be easier on them and me if they were 5 or 6 when I finally had the surgery. But then I began to experience severe changes in my bowel habits that led to episodes of worst diarrhea, terrible painful bowel movements, gassy and bloated feeling, and worst of all, I began to think I had a UTI all of the time because I was experiencing frequent urination. It wasn’t uncommon for me at this point to get up 4 or 5 times at night. The real disaster was when I started having difficulty holding urine altogether. My bladder capacity was decreasing. As much as I wanted to wait, I knew I had run out of time. The endometriosis was compromising my bladder!
So I continued to prepare for the girls’ 4th birthday party. I knew that the day after the party, we would travel the 4 hours to Chelsea, Michigan where I will be having the surgery. I found a sitter who could help my husband with the girls during my 3-day hospital stay. All the while, I struggled. Did everything I could not think about the possibility of my dying during this complex surgery and what would happen to the girls if I did. Emmi was a sweet toddler with a life-threatening allergy that no one seemed to accept or understand, and Andy was struggling with developmental delays. But, I had a birthday to plan. It was the year that Disney’s “Tangled” came out and the girls were crazy about her. I somehow had to find a way to get Rapunzel to my party. And of course, get a cake in the shape of a castle. While frequently fighting the urge to hyperventilate, I took care of each task one day at a time, one breath at a time because I really felt I had no other choice. I have never been much of cryer, but let me tell you, it didn’t help. It made everything quite worse. I fluctuated between the need to hyperventilate and having panic attacks. My anxiety had no release valves.
The doctor had said I would need 8 weeks after surgery before I could return to work. So in addition to getting the birthday party-ready, I was doing a deep cleaning of my house, stocking up on supplies, and trying to get my mother to travel from California to Michigan to stay with us for at least part of the time. She refused. Bottom line was, she was terrified of flying. I had to settle for my mother-in-law with whom I had never been able to get along. It wasn’t that she was a bad person. Frankly, the problem was that we were just too much alike. We were just used to doing things our own way. So I knew she would not listen to any of my requests. I also knew that I had no choice. And that was extremely upsetting. The doctor had been clear that I would be able to do little during my recovery period. I agonized that my mother-in-law would do things “wrong.” I wasn’t yet ready to accept that different is not wrong. At least not if it concerned my children. As far as I was concerned, if it wasn’t my way, it was the wrong way.
Just a week before I was to have the surgery, I was on the phone canceling that very surgery. I just couldn’t do it! Sorry! My body was just going to have to hold on for a few more years. My girls needed me. And I didn’t have anybody that would take care of them as well as I would. So what if I ended up needing another bowel resection, I had survived one, hadn’t I? Surely I could endure another. Hadn’t I always been able to push through anything I had set my mind to? Of course, I could do it. Two hours later, Dr. Portz was personally on the phone with me… I don’t know how long I was on the phone with him. Hmmm. It seemed like hours. It probably was. He talked to me about the dangers of waiting any longer and recommended several other surgeons so I could get different opinions or even a different surgeon. He also reminded me that a planned surgery diminished the odds of complications while emergency surgery increased them. And of course, he didn’t have to say it: did I really want to have emergency surgery in a small town away from experienced doctors?
I felt defeated. Of course, I knew that he was right. I trusted him and understood that I didn’t need another opinion or a different surgeon. I agreed to keep the day of the surgery and hung up on the phone. I had no choice but to face the reality of my medical situation. Sitting in my office alone, with students walking up and down the hallway outside, I cried. I cried hard. These weren’t tears rolling down my face. It was ugly crying with heaving sobs that wracked my body, snot running down my nose, as I tried not to wail. I cried because I was afraid something would go wrong and my babies wouldn’t have their mother. I cried because even if things went right, I wouldn’t be able to take care of them for weeks. He had said 8, but it was actually turned out closer to 12. And, most of all, I cried because I had no choice but to face my fears.