On January 27th, 2017, I went in for a surgery.
Deciding to have the surgery was complicated. It was something I ended up desperately wanting - because it was my one last chance to have my pelvic pain and symptoms improved. We had tried everything else. Dietary changes, acupuncture, physiotherapy, continuous birth control pills, IUDs, Lupron (chemically induced menopause), numbing creams, at-home physio tools, tens machines, anti-inflammatories, steroids, pain killers, deep tissue massage, myofascial massage, even Botox injections into the muscles surrounding my female organs. It was an entire stream of doctor's appointments, attempted therapies, failed therapies, and nothing ever worked well-enough to get me to a point where I could cope with it. It took over 15 years of all of this - constant attempts to simply lessen the pain, reduce the amount of cysts, reduce the extra symptoms resulting from the pelvic pain (like migraines and bladder swelling and inflammation).
I only had two choices left.
1. Stay on Lupron (which came with horrendous side effects that had me puking on a daily basis, for one) and then just pop extra pain killers to try and tough it out.
2. Take a leap of faith and try a complicated and high-risk surgery (in my particular situation).
The surgery was high risk because of two prior major abdominal surgeries, the fact that my organs in my stomach cavity are in different places, several other illnesses that could create complications (like my HAE which could cause my throat to swell up just from the tube down my throat), and then I have so many allergies to medications AND I am immunocompromised so the risk of infection could have been deadly. Not to mention likely scar tissue AND, of course, the fact that there was absolutely no way of knowing if the surgery would work. It *could* reduce my pain and other symptoms, it could do nothing, or it could have actually made things a lot worse. Furthermore, if something did go wrong, I could have wound up dealing (again) with an ileostomy (potentially permanent), or it could have been fatal.
In my mind, however, the surgery meant that I could go OFF of Lupron, I would not need any birth control devices or medications, and I would never again have breakthrough bleeding and all of the crushing pain that was associated with that particular bodily function.
There was a *chance* I could feel better. Even by a slight degree.
There was a *chance* I could have better experiences at home.
That one little shred of hope was enough for me to take the risk.
If the pain wound up being worse after surgery, it would mean more pills and more appointments like I had already gone through. So why not try??
The process of getting to the surgery was also complicated. Once it was decided that it was what I needed, finding a surgeon to agree to perform it on such a high risk patient was another feat in and of itself. Safe to say it took nearly 2 years and a few consultations with various surgical teams. I won't get into the stresses of that.
Now, even though it is what I wanted, it was terrifying. I had to fill out a personal directive and living will, I had to have my family and spouse sign it, and went through several possible outcomes and what my wishes would be should the worst scenarios occur.
But here we are. One year and one day later after having a laparoscopic hysterectomy and bilateral oophorectomy.
Although I still have pain, things in that department have improved. The deep cramping aching pain is less intense and has a delayed reaction, so my quality of life in my relationship has improved. I am no longer puking every single day, I am OFF of Lupron (which we found out was contributing to several awful side effects), I do not have to worry about menstruation (I can't tell you how nice it was to give away my stash of feminine products), and some other symptoms have lessened.
To be honest, in the grand scheme of things, it is a minor improvement. But it is enough of an improvement to have made the entire surgery worth it. Just being able to stop the Lupron injections is enough for me.
This past year has been a good one overall, with some issues. With less pelvic pain means that I could focus on other parts of my health and narrow in on other facets of my medical complications. I have started two new medications, my Ankylosing Spondylitis has progressed to showing erosion in my SI joint, and my Crohn's has made its way into the spotlight again - flaring up in September and not yet relenting.
This year, however, we also got engaged and started planning a wedding (eeeeeee), we got to enjoy our backyard and garden over the summer, and I have had better luck with my HAE since being on a new medication.
In summary, the surgery was absolutely 100% worth it for me. I am very happy and very appreciative to my doctors who took all of my fears and requests into consideration and still agreed to perform this controversial procedure. A year later, my scars are barely visible, my pelvic pain has improved a bit, and my nausea has improved.
:)
Until next time,
#Strength