Umbilical Update #18 / Endo Update #1

Things have not been the same since I had that blogging break. Lockdown loneliness got to me; boredom, poverty and the anxiety of waiting to start my new job. I was fed up of being single and was still dealing with mystery pains.

It is now 2021 and my life has turned completely around in all areas except one. I met a beautiful, intelligent, caring and kind man, my new job is interesting and challenging. I returned to ballet. I moved to a sleepy village in the garden of England. I even adopted two cats! (More about them later) A new-found love of life surged within as I walked the muddy country miles I felt extremely smug in my little Covid free bubble. But, around the new year, familiar lightning striking pain shot through me causing me to double over in agony.

I was told recently that I had a hernia within my umbilicus that was a post laparoscopic complication. For almost two years I have believed this to be endometriosis. Why? Because I know the searing, crippling pain and also because I write my pain up on this blog and there is a cyclical nature to it, much like a menstrual cycle (of which I have none). Confused yet relieved I accepted this diagnosis, that I was infecting and reinfecting my belly button and was told to lose weight and throw out the skinny jeans.

I’ve lost two pounds (it was Christmas and I’m all loved up so it’s super hard to not eat cheese!) I make plans to cut most things from my diet during lent and looked forward to Valentine’s Day (which I have early to accommodate childcare responsibilities). On Sunday, after eating my weight in cheese and chocolate, I felt a bit sick. I had a tummy ache and cursed the cheese! On Monday I could not get out of bed. Four days and a call to my GP later, I am back on the URGENT list awaiting a trans-vaginal scan and hormone blood tests.

For those of you who’ve known me a while I have been peri menopausal, and last year, through diet and exercise, I combatted insomnia and the night sweats. I thought myself doing pretty well and was relatively pain free most months. But, here I am back again on my stupid carousel.

A quick call to Preeti confirms that last month I was also in unexplainable pain so I wonder if my endometriosis never in fact really went away but simply moved somewhere else?

Terrified of going to the Doctors, to phlebotomy, to the sonographer, to a bored and confused consultant who won’t help me or worse back into oncology when they see another dark cystic mass they fear is cancer which they test before releasing me back to where I began only to start the cycle again the following year; I begin to panic and cry and get depressed and become inconsolable. I end up back in therapy.

Helen and I discuss the complete lack of control I have over my health and the mistrust I have for the medical profession which feeds into my fears. SK and Mr K both left me during periods of medical trauma and although many things have changed in my life now, this one, pathetic, unresolved, area frustrates me. I begin to worry that I will be abandoned or prove that I am ‘not worth investing in’ whatever that means but these words came out of my own mouth and not his, he remains unperturbed, supportive, loving and understanding.

I cannot believe that I am here again, not to mention the fact that I am in physical pain!!

Last night I cried myself to sleep beside the most wonderful man I have ever met. Why do I have to be this person, why can I never move on, must my life be defined by an invisible illness? What scares me most is knowing that if I were still single I would probably try to kill myself again. It truly is that painful and unbearable. It is almost six am and I’m up right now writing this in so much pain I could vomit. Must I live my life like this? Why does Nobody care? Stuck in the system, around and round I go every couple of years maybe it’s something different, maybe not?

I decide to do my own test throughout lent. I am going to fast and pray each day. I want to one day beat this thing I have, be pain free, live a life without mystery. I’m going to start with diet and exercise. I will get my weight into a healthy zone (not easy for women with hormone issues) and I will prepare for surgery.

My umbilicus was not investigated for endometriosis however due to this ongoing pain I am pushing for another investigation. Wish me luck my friends. Send your love and support my way and pray that one day I no longer live in this extreme excruciating pain

With love to you always x

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