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!!!
Well my “vacation” has come and went. Unfortunately it did not go quite at all as we had planned. In fact it was by far the worst vacation I have ever been on. My mom, husband, and I got a long great. On the other hand, I had to learn a hard lesson about my Aunt. While I was hoping to spend a lot of time and make good memories with her since she has Small Cell Lung Cancer, I was in for a rude awakening.
Turns out the only things ‘important’ to her were chain smoking and skyping her family back home. I was taken by complete surprise. She also treated me personally, like I was dirt on the ground. She continuously called me a bitch, claimed that I needed to take my ‘meds’, claimed that I was being mean to her, and that she should give me pills that would help my mood swings and bitchiness. All of this literally came out of nowhere. I calmly explained to her that yes my hormones are imbalanced due to the injection of Lupron which put me into a menopausal state. But even my husband and mom agreed that I was acting very normal and was not treating her bad at all. Actually I acted as if everything she said didn’t bother me and laughed it off to not create waves. She attacked me for having a disease that I cannot control and tried to down play the severity of my disease.. that I just like to complain about it. Someone that I thought cared about me as I did her really showed me who she really is.
Then at the end of the trip it all came to a head. My aunt stole my vicodin and of course she lied and denied it. But it all finally made sense. She was so irrational and mean towards me the whole trip because she was under the influence. Drugs make people do things that normally they would never do. I learned a hard lesson. Although she has cancer I can no longer feel bad for her. She’s chain smoking like you would not believe and she has LUNG CANCER! She’s using the cancer as a crutch to steal, lie, and get high. Meanwhile, everyone is feeling bad for her. I’m sorry but I can’t.
The great memories we wanted to make is now just a vacation I wish I could forget.
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?
Today marks one week since I started the Vicodin and Elavil. This entire past week I have been feeling relatively good, not much pain and my nerve pain virtually gone. I have been experiencing headaches but not sure if it’s from the meds or it’s just the good ole’ Ohio weather.
BUT TODAY, I decided to scrub down the shower since I haven’t felt good enough to do it in the past few months (I know that’s gross but that’s the one thing I struggle with because it’s hard for me to get on my hands and knees and REALLY get it clean.). Everything was fine until my right leg gave out from under me. I literally did the splits and twisted my entire leg and hip. Maybe this wouldn’t be a big deal for some people but for me this meant a world of hurt. Luckily I was able to stand up because for a moment I didn’t think I was going to be able to.
Now, my entire right side of my stomach, my leg and hip are in an enormous amount of pain. So here I lie on the couch with my pain pills and heating pad hoping that I will feel better tomorrow. Something that may have been nothing to someone relatively healthy, means to me that for the next week I may be ‘Out of Service’. Bummer 😦
In 2012, my husband (H, then 21yrs old) and I (then 19yrs old) married only to find out our chances of ever starting a family were slim. I was diagnosed with Endometriosis and PCOS. I went through 2 surgeries, multiple Drs and fertility treatments such as IUI with Clomid and HCG shots. It didn’t work.
I was then recommended Lupron which, in my opinion, is an awful shot that you receive once a month for 6 months. It has very bad side effects, short and long term like menopausal conditions, osteoporosis, paralysis, and even death. There have been lawsuits against the medication because the pharmaceutical companies are not releasing all the possible serious side effects and Drs are being paid off to recommend Lupron. My Dr never once explained anything about it to me other than menopausal side effects. Also, Lupron does NOT eliminate endometriosis it just, more or less, stops it from progressing any further and without a menstrual cycle it’s not thriving.
So, you have to weigh the pros and cons. For me, my menstrual cycle started back up during treatment and the pain turned for the worse; Lupron was a disaster. I gained 20lbs, had horrible hot flashes, shortness of breath, extremely bad nightmares, and the pain never stopped for me. After my 4th shot, I stopped it all together and I am now waiting to go see a NEW Dr for another opinion after we get back from vacation in September!
What I did decide to do though is see my Primary Care Physician (PCP). Yesterday, I met with my PCP and finally asked for what I have been holding out on for 3 years. Pain killers. I am now at my wits end and am hardly able to work, do house chores or anything that isn’t laying on the couch with a heating pad. I am now 21 and H is 23 and we want to be able to be active and do fun things especially since we cannot have kids, we want to ‘Live Life to the Fullest’.
I have now been prescribed Vicodin for pain and Elavil for sleep/depression/pain. PCP also is referring me to a neurologist because my endo is on the ligaments of my right leg causing nerve pain from mid back all the way down my right leg to my toes. I was also in a car accident in 2011 that has played a big roll in this specific pain area for me. For now, I just have to wait and see what happens while doing the best I can.