Hi my dears. As you know I suffer from endometriosis, chronic anemia and hemorrhagic cysts. The last two weeks have been the absolute worst since I developed the disease thirteen years ago. My pain has been completely debilitating. I have a pretty good threshold for pain and I was curled up, bawling my eyes out and unable to move. At one point I was practically screaming from pain.
My boyfriend decided right then that we couldn't put this off anymore. There may not be a cure but we needed to find a solution. The disease was starting to effect my life. It was effecting my professional life and my personal life. I was incapable of caring for my daughter.
We started out at my PCP who referred us to her own OBGYN. Unfortunately, her OBGYN who I really liked was out of network so just to consult with her was $150. She had told me that had I not been out of network, she would've operated on me as soon as her schedule permitted.
I was then referred to another OBGYN who specialized in surgical treatments and he was in my insurance network. The only problem was that he was almost an hour away from us. No big deal. He seemed like a really good doctor so we made the drive.
We literally have a recording of him saying that I had three options:
1: hormones (Norethindrone)
2. Lupron Injection (used in combination with the Norethindrone)
3. Hysterectomy (exactly what I wanted)
He had said that day that I had a couple of options...one of them being me being admitted into the hospital for a few days and monitored. I was frustrated and just wanted to go home. He prescribed me 10 mg oxycodone to hold me over until I made a decision.
I was in extreme debilitating pain ON the 10 mg oxycodone, 50 mg toradol and 50 mgtramadol. I weight 90 lbs. so something seemed extremely wrong here. My love immediately brought me to the hospital that that OBGYN had suggested I be admitted to. I was checked into the emergency room and immediately brought to a room. I explained to them what the OBGYN had said and it took them some time to get in contact with him as he was currently in the middle of an operation. When he finally did get a hold of him the OBGYN said that he had no intention of doing an urgent hysterectomy on me or admitting me to the hospital. You can imagine how upset and frustrated we were. We came all this way thinking that I finally had a solution and it was instantly shot down.
I was so upset. The emergency room doctor felt so bad and said that if he were surgeon he'd take everything out for me.
It's day six and I am having the absolute worst side effects including nausea, vomiting, fever, hot & cold flashes, extremely elevated resting heart rate, inability to sleep, inability to eat and even inability to drink water. My boyfriend contacted my OBGYN and told him all of these symptoms asking for suggestions. His response was and I quote, "Norethendrone takes time to work sometimes a couple of weeks/months. For now, just expectant management." Are you kidding me? Maybe it's just me but if my patient was having such awful side effects, I don't think I'd recommend that he/she continue taking the medication causing them.
I went back to work today and also have my daughter on my own again. It has been a really rough day. I didn't want to take any pain medication but by 2 pm I was in such debilitating pain that I had to. I have to take anti-depressants in the morning as well due to the side effects of these hormones.
Please share any of your endo stories with me in the comments. There is not enough awareness for this disease and I wish there was because then maybe eventually there would be a cure. Love you all. Thank you so much for your continued love and support.