UPDATE: After seeing the neurologist today… I have to get an EMG test done. Poke me with needles and stimulate my nerves to find out what is wrong with my right side. He did note my right leg is definitely weaker than my left. He also upped my Elavil. So I see a: Reproductive Endocrinologist/OBGYN, Neurologist, Gastroenterologist, and Nurse Practitioner (My PCP). That’s ALOT of specialists/Drs. I feel broken and I’m just their guinea pig.
Unfortunately I can’t get in for the EMG until beginning of November, then have to schedule another appointment to get the results and I’m waiting for a call back to find out when my colonoscopy will be. I just really hope my hysterectomy doesn’t get pushed too far out because of all this. My RE was shooting for mid November but I don’t know. A little overwhelmed…
Now just trying to relax because I’m in a good amount of pain right now. Heating pad, Couch and Vicodin you will be my friends today!!!
Today changes everything. My Dr finally gave me a stage. Stage 4, most severe and very aggressive endometriosis. He is sending me for a colonoscopy (wasn’t expecting this at all!) because of my current and past issues of bleeding with constipation and diarrhea. He’s worried of the possibility that the endo has burrowed inside my “poop shoot” (as he calls it so I understand). During past surgeries, the exterior of my bowels looked fine but he explained that the inside could be a different story. Truthfully, I think it will all be okay.. maybe just hemorrhoids. My intuition is usually pretty good when it comes to my body/health…. so hoping that I’m in the clear.
Next month though, I am having a partial hysterectomy. I will have my uterus and my right ovary removed. Leaving the left ovary so that I don’t completely lose all hormones. I am going to try to prolong the removal of my left ovary for as long as possible. 9 out of 10 I will eventually need to have it removed though. He also plans to remove the endo that’s on my right bilateral ligament and nerves, if still there. I see the neurologist tomorrow and am curious to see where he thinks my nerve pain is derived from whether it be my back or pelvic region.
Most women and especially young women as myself, would be upset about a hysterectomy.. but I’m not. I feel like this gives me control of what is going on. Now I know that this isn’t a cure, I very well could continue to have pain and endo. BUT it will help. I don’t feel that I will be less of a woman without a period/uterus. I’ve been dealing with the loss of not being able to have children for many years now, a hysterectomy will only help me close that chapter and start new. I realize that there may be more emotions and feelings to come still before and after the surgery but it’s nothing I can’t handle. I’ve been fighting my own body for far too long! I can and WILL handle what ever life may throw at me, it’s what I do. 🙂
Today I made my neurologist appointment! Now that’s the next step. I’m not going til October because we are going on vacation next week and will be gone for a week and a half. BUT I already feel relieved that maybe there is something that they can do. I also plan on making an appointment with a new reproductive endocrinologist for next month. I’m faced with a lot of decisions.. and even MORE Drs but I have to believe something good will come from it.
I go back to my PCP this Thursday to find out if she would like to send me to a Pain Management Specialist. So far with the Vicodin and Elavil I’ve had a pretty good response but hormonally I have been all over the place. Mood Swings. Hot Flashes. Night Sweats. Abdominal & Back Pain. & more. Due to the Lupron I’ve only had one menstrual cycle in the past 5 months… but that’s the idea of Lupron – no estrogen, no menstrual cycle, no endo growth, no pain. If only it worked that way. I still have pain, intermittent menstrual cycles… and now I play the waiting game on when my cycle will start again… for all I know it could never be normal again. -Causing more problems.
Hmm.. Hysterectomy sounds even better. I already have the majority of menopausal side effects anyways… but atleast with the hysterectomy -No up and down hormones, chemically induced & I no longer would need to wonder, am I pregnant this month? “Stupid Bitch of course you’re NOT LOL!”
Decisions, Decisions. Ready to close this chapter. Everyday is a day closer. Is it too much to ask for my life back?