My Cycle of Pain

I'm back from the torrents I get swept under for a few weeks per month. Though I have disabling pain every day, for 2-3 weeks of the month, it is much more severe. As my menstrual cycle approaches its second half, my pain drastically increases in severity. As a result, of course, I have to increase my medication dosage, as the pain is perhaps two or three times what it is the rest of the month. Eventually, as I reach the day of my "period" (I put it in quotes, because I still have all the effects of a period, other than the actual bleeding since removing my uterus and keeping my ovaries), the pain skyrockets.

At that time, it seems no amount of medication can help, and just like I've done for years before my hysterectomy, for most of my life in fact, I struggle through the next few days in intense pain. The day the pain decreases I inevitably am extremely sick, I assume from taking so much medicine, and I become quite ill: migraine headache, nausea, vomiting, etc. So even though my pelvic pain is somewhat better on that day, I end up spending the whole day extremely sick and unable to function. Sometimes, it takes two days to recover, as it has this month, and sometimes, only one.

The problem (other than the actual pain and sickness part, which is just a given in my life nowadays) is that as soon as I begin developing a routine, or force myself to try to engage in some sort of responsible behavior and take care of some of my errands, the painful 2-3 weeks of my month begin and all those habits and efforts are lost again. I take so much medicine and am in so much pain during the bad parts of the month, that I usually do nothing during the day other than try to survive it.

Then, trying to reestablish good habits, to the degree it is possible with the pain and medication I have on my better days, becomes very difficult. It is a horrible cycle, because as soon as I feel a little better and think I might actually be able to take care of some things, I become extremely sick again and drop out from the world even more than usual. I cancel or forget about appointments. I don't check email (I hardly ever check phone messages to begin with), and any sort of schedule I might have tried to impose on myself goes out the window.

One other problem with this cycle is that most who have chronic pain don't experience it in quite this way. My doctors don't quite seem to grasp that I need a very different amount of medication during one part of the month than I do in the other. One pain-management doctor who wanted to put me on longer acting medication did not believe in taking short acting pills for breakthrough pain. I already don't agree with that, but was willing to try it his way regardless, as long as the long acting pills were strong enough to mostly control my pain and prevent the need for breakthrough medication. But, he also wanted me to take the same amount of medicine during all times of the month, despite the fact that my pain is literally 2-3 times worse during more than half the month than it is during the rest of the month. That is plain and simple just gross undertreatment of pain, and makes little sense.

If my pain was that bad all month, I don't think he'd suggest taking only 1/3 of the medication that I need, but because it is that bad for weeks out of the month, it is okay to so severely undertreat it? I don't think so. And I truly don't understand what is so difficult to understand about my cycle of pain. It's worse in the second half of my cycle just as it's been for many years and just as it is for many women with endometriosis. Perhaps, part of the problem is that it's pain doctors, not gynecologists, who end up prescribing this medicine (not that the obgyns. I've seen were ever helpful to me in the years I saw them for pain relief, they wanted nothing to do with prescribing pain meds and still don't)?

Now, I am slowly coming back after the severe pain and illness and I'll have a few days where I don't feel quite as bad as I have been. It is up to me to fit in as much as I can during these next few days, despite how hard it is for me even in the "better" days, because they will again be over before I know it.

What about you? What is your cycle of pain? Does your pain vary according to different factors? How do you deal with variations in your pain, and how do your doctors respond to it?