Having endometriosis seems to be an excellent lesson in developing patience. A lot of waiting around seems to be involved with this disease: waiting for medical appointments, waiting to see if a new treatment regime works, waiting to see whether you can have a baby, waiting for adjustments to be put in place at work, etc.
I’m still not very skilled in the patience department, waiting is not my forte. It;s makes me jittery and anxious. I don’t think I’ve ever heard to three bleeps of the microwave that tells you it has finished. What can I say, I’m a do-er.
The lack of progress in taking control of and managing my disease was really getting to me for a while, but since the new year I have tried to fill the void by being slightly more proactive. It took much foot stamping and pleading, but I finally have an appointment booked in BSGE accredited endometriosis centre at the beginning of March, so that is some progress at least. I’m really excited to finally discuss my situation with an endometriosis expert.
The waiting time involved in this has got me thinking about the best way to prepare for such appointments. For some reason, despite being intimately acquainted with the effects of endometriosis on my body, all this information just seems to evaporated out of my head the moment I enter a doctor’s office, and I never really do justice to how unwell I have been. Maybe it’s some weird British stiff upper lip thing. To address this, one thing I have started doing since the new year is keeping a pain and symptoms diary, using the ‘my pain diary app’ for iphones. I thought it might be useful to show my consultant something ‘concrete’ about how the disease affects my life, since my saying ”I am in agony and exhausted most of the time” doesn’t seem to have penetrated the psyches of most doctors I have visited before. I’m quite interested to see whether this approach impacts upon the quality and outcome of my appointment. I will keep you all posted on that!
I also made this diagram to show precisely where I experience endometriosis pain, and I am hoping this might be useful in ensuring that each of these areas are addressed in some way by the end of my consultation. My shoulder pain, thanks to the endometriosis on my diaphragm, is particularly debilitating, but so far I haven’t found anything to help with this.
I’ve also contemplated keeping a food diary as well, but I think that might be overkill at the moment. I sometimes feel that somebody should be paying me to do this stuff, the amount of time I put into it. 😀
So, I would like to know, how do your prepare for meetings with your endometriosis specialist? Do you use any technologies to do this, and do they help? Tips and advice in this area greatly received. Also, I’d like to hear your thought on coping with the waiting and uncertainty that comes with endometriosis.