Because I am special, I had TWO endo flares in June.
But because I am hard core, I spent the day at the Pride Parade, and at my friend’s dance party on Day 3 of the pain (June 27).
I was drugged up all day, of course, and I didn’t dance – I sat and watched people, instead.
I didn’t suffer again until July 21, OF COURSE 3 days before I had to get on a plane to visit family.
I had tried to refill the Norco a week earlier via the web, but it never got approved by the doctor. I kept calling to check on the status, and the pharmacy said they’d send another request, but there was nothing. So a day before I had to get on the plane, I reached 8 on the pain scale, and I got an emergency appointment with any available doctor. Well, I ended up with a nurse practitioner instead! And she refused to fill my script, and sat there arguing with me about it! Finally, she said she’d give me a few pills to tide me over until I heard back from my GYN, and she stormed out of the room, slamming the door.
My girlfriend was right there with me when it happened. I looked at her, mouth agape, and just started crying.
I am not a drug seeker, goddammit!! I am in a lot of pain!!!
I spent another two days in pain after landing in Michigan to see family, but at least I had enough pain meds to tide me through.
I recovered as I always do.
When I returned from my trip home, I had an appointment with a pain management doctor. I was expecting to be introduced to the different types of physical therapy type pain management they had to offer me.
Instead, I was told that before I can get to that stage, the doctor had to interview me. She wanted to know my life story with endo, so I told her. Then she said she needed to do a pelvic exam.
I was not ready emotionally for this, and told her so. She apologised and said that it is necessary for her to make her final decisions as to what care I need. She promised she would not use a speculum, or torture me.
I consented, but was not happy about it.
She did a simple pelvic with just her fingers. While in the stirrups, she had me lay my right leg to the side, then my left leg, while she kept her fingers inside of me. I yelped out in pain at the slightest movement of my legs to the side. She said that’s all she needed to assess, and told me we were done.
She then informed me of her opinion: I have Pelvic Floor Dysfunction.
“On exam, you have significant spasms in the muscles of your pelvic floor; this is commonly referred to as myofascial pain or pelvic floor dysfunction. Myofascial pain is typically worse with physical activity and after intercourse and/or bowel movements. When this has been a longstanding problem, changes happen in the nervous system that make the pain worse and even spread to other areas of the pelvis. The more the muscles spasm, the more pain you have; the more pain, the more the muscles contract and spasm so this becomes a cycle that can be difficult to break.”
We discussed the various types of treatment, which is the usual:
- Oral contraceptions
- Mirena IUD
- TENS unit
I vetoed all but NSAIDS and TENS unit.
We then discussed the Gabapentin. I was on 200mg/day, which made the doctor laugh robustly. I got offended, and told her that at 300mg/day, I experienced tremors in the hand and neck. But after discussing it for a bit, and knowing that I’ve been on the stuff for two years now, I decided to try increasing the dosage again. She wants me to increase by 100g every three days.
When I got home from the appointment, my girlfriend was waiting for me. I broke down crying, because I am frustrated that I have YET ANOTHER diagnosis of something awful.
But it makes sense now as to why surgery twice “failed” me.
So, over a week later, I’m now at 500mg/day, and I’ve started to experience very minor hand tremors. I will continue increasing dosage until it becomes uncomfortable emotionally for me to deal with.
Going back to george, though…
I felt good until August 15. That afternoon, I could feel my body breaking down, slowing down… every joint and muscle felt fatigued. But I had agreed to show up on the U.S.S. Hornet for a paranormal tour. I’m glad I did, and I got to lead a tour, something I’m becoming more comfortable with over time.
But by the time the tour was over, my muscles and joints, especially in the legs, felt strained. I had wanted to go out dancing after the paranormal tour, but I just couldn’t do it.
I realised my body had entered yet another pain flare.
The next morning, I was expected to be on the Hornet again for Security. When I woke up, I tried to ignore the pain. Sheer stubbornness got me dressed, fed and out the door, and to the ship. I took my pain medication first thing in the morning, and at mid-morning, and again right before I had to leave, but the pain STILL managed to take me down right before the end of my shift.
I made it home and crawled into bed. I remained bedridden for over 24 hours.
What pisses me off to tears is another beautiful, warm, sunny day was ruined by pain. I could count how many beautiful days I lose each year to this hellish pain, but it would be too depressing to stomach. What made me cry even more is that my girlfriend was staying with me that weekend, and I felt cheated out of happy fun hangout time with her. Though I have to say, she is the best girlfriend ever – she made meals for me, did some dishes, fed my cat, warmed my heating pads, and stayed by my side despite me being in states of listlessness or whimpering in pain or emoting anger at being in pain. I offered for her to go do stuff, hang out with people locally, etc. But she said she WANTS to be right here, by my side. I feel so lucky.
On August 17, after my girlfriend left back for her home, I developed a nasty migraine which lasted for hours. I put an ice pack on my head, it was so bad, and I finally just went to bed.
Woke up this morning, not feeling the greatest, but I had to go to work.
I was at a 6.5 to 7 on the pain scale all day, and just before it was time to go home, I spiked up to over an 8 on the pain scale.
On the way home, I fumbled around for some Norco, and found out I only had one pill left!!! So I called the Kaiser pharmacy, and was told that the doctor STILL has not approved the refill. The pharmacy said they would send another request. When I got home, I emailed my doc as well. Now I just have to hope that the last pill I took is all that I really need, and that the pain flare will come to an end tonight. Until then, I’m back to bed rest. The Norco kicked in, and I slept for three hours.
When I woke up, I thought it was time to go to work. It was only 9:13pm.
Being on 500mg/day of Gabapentin so far is NOT helping me with the pain.
I have a pending appointment with physical therapy, and I will be getting a TENS unit in the near future.
Now I must try to go back to sleep for the night…