For me the challenges of this condition are both physical and mental.
The physical aspect has been coming to terms with the time that I am literally knocked on my ass. I used to drug and caffeine up and carry on regardless, as the disease progressed I became less and less able to do that. At my worst I would be on the couch either exhausted or in severe pain for a total of two weeks out of the month. Not ideal for anyone, let alone someone with fitness goals they strive for!
Recently, I have had laparoscopic surgery to remove the offending tissue. I was petrified before the surgery. At that stage there were no signs that my symptoms were caused by anything as all of the tests had come back negative. Post- surgery the news that It was endometriosis was so validating. All of that pain for so long wasn’t just “normal”.
Once the surgery was complete I was given two options to contemplate … if you have endometriosis I bet you know exactly what these are and you are probably rolling your eyes as you read this. Option number one; get pregnant ….I can’t even begin to breakdown as to why this is not viable for me right now, so that’s not going to happen. Option 2, take a steady dose of artificial hormones to stop the menstrual cycle in its tracks. No cycle, no endometrial regrowth right? Riiight.
Brief history of Bek; hormones equal depression, oh and craziness.
So I thought I’d give the less permanent of the two “solutions” a bash. I know this will come as a shock to you, but taking the oral contraceptive pill (OCP) resulted in depression, craziness and weight gain. Just what a girl needs in the lead up to summer. I fought with my partner, lost my libido and confidence and … wait for it. My monthly cycle continued.
It’s been a rough ride. I’ve gone from a pre-diagnosis state of forcing myself to “woman up” and carry on with life because “every woman has a period and they don’t take time off” (that was my mental chat to myself for most of my adult life). I’ve been in agony and hunched over the shop counter feeling like I’m going to pass out whilst dealing with a customer complaint and still not picked up the phone for help.
I’ve questioned myself constantly, why can’t you cope with this? Why can’t you just get up and carry on? Am I just weak?
The news that something was wrong was such a relief! I thought that there would be a solution.
But alas the realisation dawned that there was no current solution that my body could tolerate. This news was followed by a feeling of total despondency and loss of power. I have been put on a cocktail of four different drugs that I am required to take whilst menstruating so that I can function on some level.
Being of a natural health persuasion, the thought of having to take all of these monthly is really not ok.
This is the bit where I pulled myself out of the murk of helplessness and got focused.
I am a clinical nutritionist. If there is some way that I can use food to heal myself, you can be freaking sure that I will find it.
My goal? I aim to be symptom free. I figure that is plenty of time to address systematically any causes of inflammation, immune and hormonal dysregulation that might be hiding in my body.
What I’ve learnt
Number 1. You gotta be your own champion. I’ve had to jump up and down and write lists of tests that I wanted carried out, I’ve taken these lists into the GP and asked that they get done. Know what is right for you and insist on it.
Number 2. I had to learn to change my self-talk to a better model, I now treat myself like I am my own best friend. My mental dialogue now goes much more like “hey babe, feeling gross? That’s ok, what can we do? Do you need to rest? That’s ok, I know where the heat pack is”.
Number 3. Be prepared. life is not predictable and sometimes, neither are menstrual cycles. I have assembled a little stash bag of medications and transportable heat packs so that even if I don’t know when things will eventuate, I’m ready for it.
Number 4. Be empowered, seek help, join support groups, research like a maniac, experiment with your diet, with exercise, with meditation. You are a force of nature, don’t be defined by a label.
Much love and warmth to anyone that is on their own journey with endometriosis.
Remember you are not alone.
One woman in ten is dealing with this.