Welcome, Mamma Crew! Today is Mamma Thursdays when it’s all about us! The mammas! Today is the last episode in the hysterectomy series.
Everyone whom I have ever met who had had a hysterectomy due to endometriosis swore to me that it was the best decision they have ever made. They said they had never come to regret the decision. I guess that must make me a contrarian because while I don’t regret my decision, I have to begin by saying I don’t regret it because I didn’t have a choice, and I don’t believe it was the best decision that I ever made. In fact, making the decision sucked. Going through it was a nightmare, and living with it hasn’t been fun. If you listened to episode 8, you know that I had a difficult time making the decision and sticking to it. No point in relieving that nifty time in my life. But today I will share with you the outcome of that decision.
My hysterectomy, the actual surgery, took a little over 6 hours due to the extent of the damage caused by endometriosis. Somehow my bladder managed to survive intact, and I didn’t need another bowel resection. However, the spinal tap I received to undergo the surgery caused cerebrospinal fluid to leak from the puncture site. The migraine I got, as a result, was blinding. I had never had a worse headache in my life and hope never to again. The phosphenes I saw every time I attempted to open my eyes were blinding. I felt incredibly nauseous! And in the middle of this, 4-year-old Emmi threw up all over her father. Yep, I was in the hospital recovering from major surgery and Emmi had the flu! Good grief! I could have jumped out of my skin when my husband called me from urgent care. But hey, since that wasn’t bad enough, her twin had to get into the action. Andy also threw up during the urgent care visit. Both girls had to be medicated, and of course, they wanted their mom. Good thing I was on so much medication that I couldn’t think straight. It took me a couple of days to realize I had not imagined the whole thing. I was completely out of it. My hospital stay went from the planned 3 days to 7 days.
By the time I was released from the hospital, the girls were totally whinnied and ready for mom. Our time in the hotel room had run out so I had to return home, 4 hours away, on the same day I was released from the hospital. Just imagine how wonderful it was to travel for 4 hours in a car with two 4-year-olds that have been sick and missing mom. I was so uncomfortable, couldn’t sit in any one position for long without feeling bloated and achy. And I wanted to kill my husband. No reason really other than he was sitting next to me, and I needed to take out my frustrations on someone. Only, thankfully for him, I didn’t even have the energy for that! I was so relieved when we finally got home, but unfortunately, that relief didn’t last for long.
The eight weeks of mandatory convalescent were an absolute nightmare. The pain was not bad at all. Then again, I did have a very high tolerance for pain at that point in my life. I was able to wean myself from the narcotics pretty quickly. This was a good thing because narcotics always make me terribly nauseous. However, every time I stood up it felt like my intestines would come out through my vagina. It was the most horrible sensation I had ever experienced! I had to move very slowly and couldn’t pick anything up without increasing the terrible sensation. With all of my other surgeries I had experienced pain and some level of discomfort, but nothing like this. In fact, for the first several weeks I was convinced that something had gone wrong. I really felt like my insides could be on the floor at any moment.
My state of mind was not all helped by my mother-in-law who persisted in taking my four-year-old twins out of the house without letting me know. Yes, I was being an overprotective mother. I might not have seen it then, but I do see it now. The unnerving part, however, was that my in-laws would take the kids to eat to local restaurants without taking Emmi’s EpiPen or Benadryl. She suffers from anaphylaxis to all tree nuts, which basically means, she has a life-threatening allergy. Anaphylaxis causes your immune system to release a flood of chemicals that can cause you to go into shock, your blood pressure drops suddenly, and your airways narrow, blocking breathing when exposed to the allergen. Without the use of an EpiPen, you could be dead before medical help can get to you. Your EpiPen is literally your lifeline. And, my in-laws liked to travel without it! I had massive panic attack after panic attack during those weeks of convalescence. Then, they decided that they needed to go home several weeks early. I didn’t know whether to cry because I needed the help or do a jig and let my intestines drop on the floor because I couldn’t take another anxiety attack.
Returning to work was also interesting! I was a college professor at the time and spent most of my day on my feet lecturing. While your average professor taught 5 classes, to help our finances, I taught 7 a semester. I had always enjoyed it, but the following four weeks were challenging. It was hard to stand for too long, walking too much caused the sensation that my intestines were going to end on the floor to return, and sitting was worse. My whole pelvic region felt an enormous amount of pressure and my stomach would just balloon. Once again, I had no choice so I pushed through the way that I usually do. I used to think it was a good thing but now I honestly wonder if I didn’t do more damage to my body and mind pushing myself so hard. But that was then and this is now…
The truth is that I know I had no other choice but to have the hysterectomy. Yes, I know that and even accept it. At the time there were no other real solutions to endometriosis. I don’t know that there are better ones now. So given the options, I made the right choice because at that point it was the only choice. You really can’t argue with that logic, can you?
The fact that it was the right choice, doesn’t mean it has been an easy one. The pain is gone! Yaaaayyyy! The intestinal problems became full-blown irritable bowel syndrome. Booo! When my intestines spasm and I think I’m going to poop my pants, I miss the pain of endometriosis. On the bright side, this rarely happens and a drug called Bentyl does wonders for the sudden attacks. I do have a small incisional hernia, too small for surgery, that thankfully doesn’t bother me. And, I didn’t lose my ability to have vaginal orgasms! Yaaayy! I would have missed those. But, here is the big BUT again…
I now have to be on hormone replacement therapy since I’m into full-blown surgical menopause. No one told me about this prior to the surgery. My surgeon had told me I would have to take a minimal amount of replacement estrogen. A tiny daily pill… No biggie right? Wrong, yet again! One year after the hysterectomy, after struggling for several weeks with what I believed to be a yeast infection gone wild, I found out that I wasn’t getting enough estrogen so my vagina was going into atrophy. On the upside, no yeast infection. So now I have to wear both an estrogen patch and deal with two weekly vaginal inserts to keep the atrophy away. It’s hard to walk if you don’t choose this route. Worse yet, my then gynecologist told me that if I didn’t take that option, my vagina could prolapse! Now what the hell does that mean? I did know one thing — it didn’t sound good at all. Well, it means that the upper portion of the vagina loses its normal shape and sags or drops down into the vaginal canal. And can even go outside the vagina. It may occur alone or along with prolapse of the bladder, urethra, rectum, or small bowel. Really? Didn’t anyone think they should have shared this information with me prior to the hysterectomy? Are you kidding me?! So estrogen replacement therapy it is! Luckily, this therapy is minimal enough that there has been no recurrence of the endometriosis that plagued me all of my youth. There is that at least!
What’s my take away from all of this? Anytime that I get a medical diagnosis for myself or the family, I do some heavy-duty research. And the Internet makes it so easy nowadays. The bottom line is I need to understand the short term consequences as well as what will happen in the long run. I look for all possible solutions and research the side effects both for the short and long term, just as I said a few minutes ago. Doctors are just a resource. I arm myself with knowledge so I can exploit that resource. General practitioners are not specialists. A new diagnosis of any type necessitates a specialist who knows exactly what they are dealing with. I don’t assume that our general physicians are giving us the correct information because they are not up to date on any specialty. And, I always remember that the doctor is the provider, and I am the consumer. If I don’t like a doctor, I simply change him or her. I have no loyalty to them. The loyalty is completely to the care and well-being of myself and my family. I don’t want any of my children to go through what I went through if I can help it. After all, we should learn from our mistakes, right? It would be a shame if I had learned nothing from my long struggles with endometriosis.