I never before felt like a burden to my family until about 4 years ago. That’s when the endometriosis got so bad that I was barely functional. The pain occupied my body and thoughts for what felt like forever and since Tylenol and Ibuprofen don’t even come close to touching the pain I was feeling, I was a miserable crying mess most of the time. It wasn’t until an ER nurse noticed my umpteenth visit for the same issues that I got any real help. She notified the doctor of what she thought was going on and then the doctor recommended a specialist for me.
At the end of that journey I didn’t feel very appreciative of the specialist - especially after the way I was treated, but at the time I was extremely hopeful. He, the specialist, was very progressive in his plan to find out what was going on and treat me. I had my first exploratory surgery in January of 2018 I believe. He found endometrial tissues literally everywhere. He also had to laser all the cysts off my ovaries (I have PCOS), and was positive if I was not going to use my uterus to become pregnant then I would need to get rid of it. I just kept producing endometriosis adhesions that were spreading throughout my lower region so he didn’t see a need to keep it if it was causing me so much pain.
After that surgery I was still hopeful. I wasn’t in as much pain, I started working out again and taking long walks. My little family could finally breath again. Or so we thought. In June of that same year I was rushed to the emergency room with pain that left me breathless and wondering if I was going to die. After a quick ct scan I was told I had a massive kidney stone that was too big to pass and they would need to go in and blast it and cut it up before removing the pieces. \
I was terrified.
I never planned on having another surgery for the rest of my life and hear I was being rushed into another one. It was from here that started my year of hell. I had 5 more of those lithotripsies and I forgot the other name for the type of surgery they performed to get the stones out. I hated waking up from those almost as much as I hated the incredible pain of having kidney stones. The stones were almost worse than the endometriosis. Both types of pain made me want to die.
And through it all my menfolk were there to save the day. Husband stayed by my side for all of it and Boyfriend held everything together at home and with the children. I could not have asked for a better team in my lovers. They took care of everything so I could just focus on getting through these surgeries.
Then came the big surgery, my dreaded Hysterectomy. I was having pains again that weren’t in my kidneys and it was escalating every week to levels I just couldn’t tolerate. And because my specialist doesn’t believe in pain medication I was using medical marijuana to try and combat the pain. It worked for awhile but then the pain was so bad that I was medicating all the time day or night and I just didn’t want to do that. It was also extremely expensive. So February of 2019 I underwent surgery again to have a full hysterectomy. The only thing they were leaving was my ovaries per my request as I didn’t want to deal with menopause on top of healing.
Eight surgeries in a year. I felt torn apart by this. No one outside my family really gave a shit and I felt like I was burdening people anytime they called and asked how I was. How do you just continuously lie to people when they ask you those typical questions? What I learned is that people aren’t really interested in pain other than their own. No one outside of my small network of family members even tried. It was like me and mine didn’t exist until I felt better. It made me feel worthless.
After the big surgery I didn’t heal as fast as I had hoped and I was still in an extreme amount of pain. My specialist didn’t really care at that point because he felt that his job was done. I was referred back to my primary care physician and he washed his hands of me so to speak. I learned later that other friends I had referred to other doctors in that specialist group had wonderful experiences with their hysterectomies and was given pain meds to manage the pain from the surgeries.
I felt hopeless. My body felt broken. I wasn’t able to do a whole lot around the house or with the children and that made me miserable. And still, the guys, my loves, they held down everything for me. Almost a week after the big hysterectomy I had kidney problems again and went in for surgery. They promised to be gentle and kept me in the hospital a few days to make sure there was no infections or anything. They gave me pain meds and watched to make sure I would tolerate it well. That was probably the best experience I had in all the surgeries.
All of 2020 and the rest of 2019 was spent trying to recover some sense of normalcy. I had nerve pain from the surgeries and had to be put on gabapentin. I had never ending panic attacks that made it impossible to be separated from my Husband. I wasn’t sleeping more than 3 hours a night and it was starting to take its toll.
My whole body was out of sync. It took until Summer of 2021 to get on the right medications and start getting real sleep. I was now staying up more during the day. I was running errands. I was taking the kids on little trips. I was able to travel farther and haven’t had a panic attack in a few months. I’m doing better, but all the time I have spent trying to heal from that incredible hard year or so has gotten my spirit down. I wasn’t laying around in bed in pain all day.
I have hope….but I’m still feeling pretty useless.
Am I really useful if I have to rely on my menfolk still? I look at my sisters and look at other people close in my life and can’t help but feel torn. I’m nothing like them. They are functional human beings that get shit done. They are successful and I am the broken one.
But I am trying. Really hard. And I try to push myself every day to be better and get back to normal - whatever that may be.
I don’t feel useful yet. But I’m hopeful for the future.