One year today, on the third of February, I had laparoscopic surgery in the hope of lightening the burden of my endometriosis; enabling me to fly off to university. It was not an exact science; ‘x’ does not always lead to ‘y’ with endo, the outcome of the operation would be an unknown box; it could be a present, but it could be a bomb.
I prepared myself the only way I know how to; going on holiday and focusing on the positives. I was very worried that there would be no improvement, and with this op as the last resort that prospect was beyond daunting. But I tried not to think about that because, well, it wasn't time to worry yet.
I had the procedure and enjoyed the showers of flowers, chocolate, and love. I felt very blessed and the road to recovery began beautifully. Three months down the line with just the Marina Coil to keep my Whoremoans at bay (opposed to GNrH which, and I quote; made my ovaries alike to ‘Fort Knox’) I was struggling to get back to my previous lifestyle; balancing 3 main jobs and lots of bits on the side, as well as having a life. The daily pain was excruciating and although I tried not to shout about it on my blog because I wished not to dishearten people, I was guest at my own pity party feeling like there was no hope for rest bite in my future. I was also panicking about how I was going to cope living with strangers in this much pain without my Momma. Although 97% of the time I am mentally on top of my suicidal tummy, I have days where I can completely empathise and agree with those who are at their breaking point with it all. I went to see my consultant who essentially said there was nothing more he could do, if I am still getting pain after 6 month then to go on the pill in conjunction with the coil.I felt helpless and desperate.
So I got busy saving myself; I tried reiki and acupuncture and luckily for me, acupuncture had a dramatic impact- I still have it weekly to this day. Without realising, if I go a month without it, my pain levels increase noticeably. This was the beginning of my long term, sustainable solution which I will come to shortly.
When you have had over 200 consultations with over 20 different specialists (not just gynaecologists) you tend to build for yourself an informed picture of where you stand and the options and choices that you have. The only thing that has really worked medically for me is GNrH, however that is not a long term solution and is probably why I am currently on crutches nursing a broken leg and shattered ankle (35 pins and plates I’ll have you know). Operations have only done so much for me, whatever causes the endo to grow in the first place is still strong with my fertile age and little medication seems to impede it. So you explore every avenue; the gynaecologist (both those in favour of medication and those in favour of surgery), the pain psychologists, the pain specialists, the gastroenterologists (and endure the dignity of an endoscopy), the urologists, the dieticians and so on. Through crossing the ‘t’s and dotting the ‘i’s I consider myself an expert on my particular condition. I know that no medication alone allowed me an independent lifestyle so I had an operation to excise the endometriosis and get me back to neutral. For me, the next port of call was to try the marina coil as a long term solution. It was not working as we hoped so we doubled it with the pill back to back. I started looking at alternative treatments and found one that worked. I follow I diet that minimises additional pain; I drink lots of water and get a good 8 hour sleep most nights.
Through time and trial and error, I have maximised (or minimised rather) my potential for painless peace. I still have pain every day and rarely have a day without painkillers, but now we have a sustainable, long term solution and I know where I stand. For the first time I am in control and ahead of the game. This is the best it can get and I accept that because I know that I have explored every avenue available to me. I mean we used to import visanne for heaven’s sake! I could get very cross about still being in pain, I let myself cry about it when I am laid out on morphine, but the fact that I am able to go to university and live away from home, the fact that I am able to wake up every morning with two arms and two legs (no jokes, please) and choice and opportunity, is a fair enough compromise. No one feels as though they have it easy, every life has challenges and difficulties, this is one of mine. There are worse things and there are better. But this is mine.
Reflecting on my 'Endo 365 calendar year' is a big task. I have had an epic year and a lot has changed. Within this year I have travelled to a lot of beautiful places and visited distant family that I love dearly, I enhanced my CV this year and gained valuable life skills that will aid me post-graduation, I have fallen in love, Family members got sick and better again, I started a new chapter at university, I write this blog which keep my sanity (I don’t post all of them ! ), I have become a trustee for Endometriosis UK which gives me real purpose, I quite shockingly mangled by lower leg and spent the most testing 11 days in hospital with doubly incontinent women and their amazing nurses.
What does year ii365 hold for me?
Rehabilitation for my leg and re-learning to walk, finishing my first undergraduate academic year (hopefully with a grade I can be pleased with), visiting the cities of Europe, a month volunteering in Uganda building playgrounds, My brothers heavily anticipated AS results (keep your fingers crossed) and my sister’s good health. When you live a big, full life as I do, not everything is good, and there is collateral damage like my leg. I accept that and am just proud and pleased that I am surrounded by so many amazing and supporting people as I am. They’re good fun too, so thank you because even reading this is a form of support and I hope that you may gain a little something from one of my blogs. I know that they are not for everyone and that some women’s lives are so debilitated from endometriosis that me prescribing ‘contextualising suffering’ just doesn't cut the mustard. I know that although it gives me strength and purpose acknowledging that there are people worse off than me and that I actually have it pretty good, that simply makes others feel worse.
Ultimately, I just wish to make the best of the situation and try to polish that turd. It is good fun and there is no harm in trying.
All my love,