Monday 12 July 2010

My friend endo



Endometriosis is my long standing companion. It will feature a lot here, so here is my history, in brief, for those that like to know about these things:

From the age of 19 I felt as if my batteries were running on half power, my abdomen would bloat to make me look 6 months pregnant, and I would have pain that felt like I had been beaten up from my back, abdomen and legs. Following numerous dead end GP visits and tests for glandular fever and gall stones I was left to go home with paracetamol for "just one of those things". Not liking the sound of this I sought help in the form of acupuncture and Chinese medicine in Cambridge. This really aided the pain and for some time I was symptom free of this odd ailment.

Fast forward a few years, I am living in London and the pain comes back. My energy levels struggle, and this time the pain feels as if I am also being burnt with a white hot poker on the inside of my body, the beaten up pain is still there and the fatigue is all encompassing. I have a doctor who finally sends me for a scan and we discover I have PCOS (Polcystic Ovarian Syndrome) which goes some way to explaining my hormonal problems but not the incapacitating pain. I keep hounding this poor doctor as he is the first one I feel has actually taken me seriously, and the pain becomes so bad I am having to take large chunks of time off work, dosed up on seriously strong painkillers.

Finally, a laparoscopy shows the source of all this trouble - endometriosis. I had never heard of this condition, and if I had maybe I could have pressed for help with my symptoms earlier. It took, in all, 8 years to get diagnosed. For a lot of that time I was told there was nothing wrong so felt convinced this was all in my head. At least the source had been found.

I have had 4 laparoscopies in all, 3 with diathermy to burn off the endometriosis. The darn thing keeps growing back though, so here I am again now waiting for another consultant appointment. The amazing and miraculous thing is, of course, that I am now a mummy, Eva and Mia are truly my little miracles and I treasure them each and every day knowing how lucky I am to have them since so many with endo are not so lucky. The universe has been great to me, sending me twins when 1 child was a tall order.

I know look after my endo with a monthly full body massage, acupuncture and a diet containing as little wheat and dairy as possible, although I go off the rails occasionally. I did a 2 month detox of mainly raw food and felt so much better for it, so my aim is to eat 75% vegan and raw, with the other percentage for keeping the balance and allowing myself to live normally.

Exercise I am convinced helps the pain by releasing endorphins, but the tricky bit is to know when to make myself so more, or when to stop as the pain can be overwhelming. I am aiming to run a 10k again this Autumn, 5 years after I last did one so I am in training twice a week running with a friend, and also doing yoga and cycling.

Endo is horrendous physcially and emotionally. It drains energy, vitality and robs it's victims of time, relationships and in some cases fertility. I have been lucky, but my journey continues with living with my constant companion.

Today is a low level endo day...burning pain and tiredness but I will try to do get out and about with the girls this morning and rest later this afternoon when The Staff come to spend some time with the Ninos. Thank goodness for staff for days like this.


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