Listening to my body – Part 3

I would like to entitle this blog post “taking matters into my own hands” simply because the last month has been complete and utter HELL and I have not heard a peep from either doctor despite my concerns. I should preface this by saying I feel confident my doctors respect me so I don’t think they are adamantly trying to ignore more, but as the medical system goes I’ve been dealt a shitty hand and its up to me to fix it now.

I  would also like to take a pause here and say “sorry for being away for so long” but I think the journey below will paint a better picture for you.

If I were to summarize January I would say, 1) hopeful on the lower endo pain 2) confused about the upper endo pain 2) concerned about the pancreatitis flare and 4) happy-ish with my UC status.

If I were to summarize February I would say 1) pissed off about the lower endo pain 2) phenomenal resolution on the upper endo pain NO THANKS TO MY DOCTORS!! 3) very confused about the pancreatitis and 4) a little concerned about my UC now.

Endometriosis Pain Blocker

Dr E is a saint to be honest with you. Despite his tremendous workload is was able to squeeze me in for my second pain blocker and made sure he was present in the appointment. This time we decided to try the pain blocker + steroid which is meant to increase the longevity of its effectiveness. Wow that is a weird sensation when  need (a large needle) goes into your nerve. Ugh! I was immediately concerned with this injection because I was nauseous from equal parts psychosomatic and equal parts somatic. Dr. E insisted I sit and talk to him until the nausea went away and during that time we talked about birth control.

Birth Control

Since the regular Minovral Oral Birth Control was clearly not working (I bled for 22 days straight in January) Dr E was going to try me back on Visanne but I just knew in my heart it was a waste of time. We talked about the potential that my ulcerative colitis, or rather my damaged gut, was impairing the ability to absorb the oral birth control. It was a quick decision to book an appointment to insert an IUD. From everything I have read, Im pretty stoked about getting this implanted and to only receive Progestin again. Aside from the bloating, which likely won’t occur this time if I am bypassing my gut, the progestin sits really well with me (and my clear skin!).

After the appointment…

What a freaking shit show. Several hours after the injection both the lower and upper endo pain was exacerbated and medically this makes zero sense. Could I have been reacting to the steroid? I was expecting pain to get worse before it got better, like last time, but not in both spots and not to this severity. I let it ride. And over the course of three gruelling days it got worse. Intense. Crippling. Nothing – not even morphine – was helping, so I was subjected to being drug free. On the third day we had some lovely friends come to town and I was NOT going to let this pain stop me from seeing them. So I did what any woman in crippling pain would do… I drank! A lot. Until it numbed the pain. Judge me all you want but when you get even the slightest relief it’s a godsend and I wasn’t about to stop.  3 stiff drinks, med free, was the perfect remedy to help me sleep.

I awoke the next day in more pain than I could imagine and I was caught between a rock and a hard place: feed into the feeling that I may die here in this bed or risk going to the hospital for some pain meds. Ok the truth may shock you but I endured the pain for TWO MORE DAYS; I couldn’t bare the thought of him missing work to be with me so I waited until he was gone. Ladies I was so shocked at the care I received in emerg. The female nurses and doctors that took care of me were all very sympathetic and determined to try a variety of medications on me until we found the right one.

Sad news is after 12 hours they ran out of meds to try on me, and a slithered back home into my bed and succumbed to enduring this on my own again. My body relaxed with the comfort of my own cave, too weak to cry, and too frustrated to tell anyone. I lay there for hours just breathing and writhing. Why didn’t I go see Dr. E, you ask? Because that day he left for two weeks of vacation and the damage of the injection had already been done. No pain med could help me at this point. I needed a fresh start.

Call me crazy but that exercise sparked a whole new level of determination in me. I could have just called it quits and claimed myself a permanent alcoholic but I didn’t think my family would appreciate that so much, nor my boss, so I spent that time in fetal position thinking about next steps. Disclaimer: My heightened determination may have had something to do with 6 days until I leave for the dominican republic – get your ass up and figure something out! 

Taking matters into my own hands

So this is what I did. I booked an appointment that day for a massage to focus on my ‘diaphragm’ pain. Words cannot express to you (though I’ll try in a dedicated post on this) how much this helped! So I booked a second one, two days later. This one admittedly was a bit more painful but still helped. Next thing I did was went to an osteopath. Have you ever been to one of these? Lord almighty I had some skepticism when I realised most of her practice was done with her eyes closed but I was in NO position to pass this up. Again, I was astonished and perplexed at how much this helped. Mentally, physically, emotionally. I am now sworn to osteopathy. More on this in a separate post for those of you who are looking into this treatment.

The stigma of natural practices

I don’t want this to be a ‘holier than thou’ moment but more of an educational moment for all of you skeptics (or rather, what I like to call judgy judgers) who wouldn’t touch these methods of practice with a ten foot pole. I see support groups for natural remedies, diets, oils, and I lump them all into a category I like to call “No thanks I’ll stick with my doctor”. But then one day, something happens and you realise that the medical system is failing you; a system designed to cater to illnesses and diagnoses that are well-defined, treatable and non-urgent. You come to the day where, literally, you say to yourself “I’m going to die on this cold bathroom floor and nobody will find me for days but at least I will not be in pain any more.” And you are forced to make a decision: Give up or try ANYTHING.

This is literally what has happened to me and SO MANY women out there. I would even dare to say a number of men have come to a reality that had once been trivial to them – have a doctor with no answers – and have given in to alternative treatments. So on record, I say, “If I have to choose death or alternative medicine, I’m going to try alternative medicine”.

One week later I was in shape to go to the Dominican (with one day only, sick in bed at the all-inclusive) and enjoyed a much needed break from life.