Bearing in mind that endometriosis is invisible (and by that I mean a doctor isn’t just going to look at you and immediately make a diagnosis – it’s not obvious like your leg falling off!), I have discovered the best way to get what you want out of your doctor’s appointments is to think about what you want to get out of it before you arrive.
For example, before I saw my dietitian I made a spreadsheet detailing my symptoms, what I was eating, what I was drinking, when I was eating/drinking during the day, pain levels, the date of my cycle, exercise taken, sleeping patterns, stress levels and my energy levels every day. When I noted the pain levels I would give it a rating from 1 – 5 but then in my symptoms I would also detail if I’d been sent home, what painkillers I took to help me cope, how long the painkillers worked and if I also needed a hot water bottle. I kept this up for almost a month before I saw my dietitian and it was a good start for her to see what was good, what was bad and what was triggering some of my symptoms.
It is worth making detailed notes of how the pain makes you feel – be very descriptive. For instance, during my last marriage, I would roll around on the floor in the night in agony because if I stayed in the bed I would have kept Ramman awake. I used to take prescription anti-inflammatories, prescription painkillers and the pain would still wake me up in the night! I have been known to spend whole weekends in bed, in the foetal position, having taken lots of pain medication and keeping a boiling-hot hot water bottle on my lower back. I’ve even blistered my back in an effort to kill the pain! When I told my doctor this, I showed her my scars. Strangely enough she listened more intently after I showed her the scars!
The good news for me is that so far my periods haven’t been too bad with my new cycle. I am still suffering fatigue and my hormones are all over the place. I am hoping that the longer I’m on my new “longer” cycle, the more comfortable I’ll feel.
It’s the details that help a doctor know exactly what you’re going through. If all else fails, get a second opinion. It’s your health, after all. You don’t deserve to suffer.