Greetings my fellow spoonie/chargie friends and readers, I know it’s been a REALLY long time since I’ve come out with any content. As many of you know will power isn’t always enough to be able to force one’s body to do what you want.
I do have a list of topics others would like me to cover, but also, I have decided to share my current health journey with you all in hopes that someone out there may be touched. I will continue to make an effort to also write on topics you guys want to hear about or know more about. Since I’ve already started on this journey I’ll give you a little bit of a back story.
Back Story
In September of 2016 I had a Diagnostic Laparoscopy to determine if I had Endometriosis or not. At that point, I had been dealing with chronic pelvic pain for a good couple of years, but hadn’t sought treatment or a diagnosis because I was busy getting my head checked out. After I recieved my IIH (Idiopathic Intracranial Hypertension) diagnosis and started treatment I then turned my attention to my chronic pelvic pain and gynecological PCOS symptoms.
The procedure (Diagnostic Laparoscopy) revealed that I did not have Endometriosis but that ovaries where enlarged and polycystic and I also had a prolapse uterus, I’ve never had kids so the prolapse was a surprise… After the procedure, my doctor suggested a course of Lupron Depot. I went home to think about it and did my research deciding in the end that it was worth a try because I was miserable taking birth control pills all the time.
To my surprise I didn’t have a lot of side effects while receiving Lupron and felt so much better, I was also able to lose like 20lbs!
I finished the 6 months of Lupron in March, when I saw doctor in April I was miserable again. At that point, we seriously discussed the possibility of a total abdominal hysterectomy, we had previously talked about the fact that me birthing my own children could kill me and that I have a disorder and we don’t know if there is a genetic link. In May I signed the paperwork for the surgery and on June 1st I resigned the consent form and a form acknowledging that I had been informed I would never be able to become pregnant.
Surgery
Alright, so about this surgery. I’ve had my back cut open, had brain surgery, had my gallbladder removed. This was the hardest surgery I’ve ever had, this is the longest recovery process I’ve even gone through psst it’s still ongoing.
Besides taking out my Uterus, Cervix, tubes and horribly cystic Ovaries my doctor also cleaned up scar tissue from all my shunt surgeries and he carefully moved my shunt which had snaked its way through the Omentum (a large fatty pad of tissue that drapes over the intestines) he then insured my shunt was still draining and placed it back where he had previously visualized it. According to what doctor said the day after my surgery was that my ovaries were so cystic that when he went to clamp them before cutting the cysts started to rupture. I think it was time for them to come out.
The rest of my afternoon and night after surgery is all a blur, I vaguely remember my dad being there for a while.
Hospital Fun
After surgery at some point that first night I was put in an abdominal binder and given pain meds, both those things led to, two different types of pain. A rebound headache from the medication my doctor and I had discussed before surgery and a high-pressure headache from the lack of shunt drainage due to the abdominal binder. My RN ended up calling my doctor, who was on-call that weekend, and pitching him a plan I had come up with to hopefully reduce my headache, he agreed.
The next morning when he rounded, he asked me if I needed to be transferred. The pain from the procedure was under control but now I had a problem out of his scope of practice. He wanted to transfer me to my Neurosurgeon or have my Neurologist come in to see me. I asked him to please give me 24 hours and if things got worse he could transfer me or I would ask to be transferred sooner. We kept the changes made the night before and I told him if he wished he could check with my Neurosurgeon to determine if I had suggested the correct plan of treatment which had been to discontinue the Norco, which had led to the rebound headache. To change to Tylenol III and a shot of Dilaudid or two to keep from going over the Tylenol limit and get my head under control.
After 24 hours of laying mostly on my back and trying the new meds I was happy to hear that doctor say that I was well enough to go home and didn’t need to be transferred.
Home
After I was discharged I went to my grandparents’ house “the farm” for two weeks while I recovered. I slept a lot, read some, and for the most part ignored my computer. During the two weeks on the farm I got some of my medical appointments taken care of for the next 6 months. I saw my Endocrinologist (I wanted to sleep on the way there and back (3hr both ways), Dad wouldn’t let me).
Besides all that fun I am happy to announce surgery was a success the pain is gone; the pressure is gone and I am so happy. Yes, I’m back to living by a med alarm to remind me to take my Estrogen Replacement Therapy (ERT). I think I’ve kind of lucked out, I seem to be having an easier time then other young people who are going through the same thing. I haven’t had hot flashes yet, yes things are getting dry, but I haven’t really had any major issues yet. I didn’t even have any major issues on the Lupron either. Everybody is different though and maybe this will hit me in a few weeks or I don’t know maybe I’m just going to have an easier time with Surgical Menopause.
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