My oldest friend,
There are so many things that I need to say that I hardly know where to start.
There was a time when we were happy together; through our teens and early twenties we ran and weight trained together for hours. At 18 I was told that you had endometriosis and despite several bouts of surgery you bounced back. We were fit and strong, you didn’t seem to mind my partying, the stressful job or the long hours. Until one day, aged 28, you did.
I turned over in bed late one Sunday night and you started screaming. The right side of your abdomen felt like you’d been run through with a sword. A&E diagnosed gastroenteritis. The next day in work, white as a sheet with a right sided pain and a sore throat, one of the directors told me to go home and stay there until you felt better.
By Tuesday morning things had not improved. I called a doctor friend who thought that you possibly had appendicitis. Knowing that you weren’t well I rang every private hospital in Surrey to try find a gastroenterologist with a clinic that afternoon. Eventually I found one and made an appointment.
Quite how I managed to deal with the insurance company, drag you to an emergency GP, convince them to send a referral fax and then drive half an hour to the hospital I will never know.
By 2pm you were paler than before and struggling to walk. The face of that gastroenterologist is imprinted in my mind; a mature, mild mannered gentleman with half-moon glasses. He looked at us and said gently “my dear girl, you don’t have appendicitis but I think that we need to pop you into bed”.
I don’t remember most of the following hours but there was a steady stream of doctors, who poked and prodded, perplexed by your high right-sided pain and worsening sore throat. Unexpectedly, you started bleeding. Mortified with embarassment I spoke to a nurse and explained that I was mid-cycle and wasn’t expecting a period for a couple of weeks.
In what seemed like a split second we were hurtling down a corridor towards an operating theatre, I remember overhearing someone saying ‘hemorrhage’ and the feeling of a concerned looking nurse holding your hand, but then nothing.
The next clear recollection is that of a large portly man of about 60 with fingers like fat sausages saying “…yes the right sided pain was caused by a pint and a half of blood tracking up the paracolic gutter. I lasered all the endometriosis I found and removed the remains of a ruptured ovarian cyst…without surgery you would have had about 5 hours left to live”.
I just needed to know that your right ovary and fallopian tube were undamaged. I was getting married. I wanted kids.
Two weeks later you were failing to recover. If anything you were getting worse. I took you back to Mr Sausage Fingers. I hadn’t realised that I’d had the honour of being operated on by the President of the European Society of Gynaecologists. Unfortunately, that weighty title conferred upon the holder neither charm nor any semblance of a bedside manner.
I told him that you were in pain and that it felt like the endometriosis was back. He made it quite clear that I was a Silly Girl and he was an Important Man and, by virtue of the fact that he had lasered your endo a couple of weeks previously there was no possible way that I could be right.
Colon spasm was the answer he came up with and we were sent home with Colofac.
My mother saw an article in The Times that week about Dian Shepperson-Mills who had written a book called ‘Endometriosis: a key to healing through nutrition’. She clipped out the article and posted it to me with a note saying that she had ordered the book and arranged for it to be sent directly to me. She begged me to make an appointment with Dian.
By the time the book arrived you could hardly walk. We sat quietly and read it from cover to cover without stopping, sobbing at the stories of other women going through the same thing and the realisation that we weren’t alone.
I made an appointment and within a few days you were carried into Dian’s office.
Dian was a tiny, formidable, softly spoken woman. She had been through it all so understood first-hand the agony of endo. For three hours she listened, held your hands and told me that everything would be ok; there was much work to be do in relation to what I was feeding you but first I had to go back to Mr Sausage Fingers and tell him that the Colofac didn’t help and that he needed to think again.
So I did. After a great deal of discussion and, in what can only be described as a ‘fit of pique’, he said that he would take you back into surgery to see what was going on.
Coming round from the anaesthetic I opened my eyes to see a large figure at the end of the bed looking at your notes. Groggy and disorientated I focussed on the sausage fingers. I desperately wanted to know what he had found, what he had done. I remember snippets “…the most aggressive recurrence of endometriosis that I have ever seen, I’ll need your consent to use the photographs for training purposes”. As the realisation sank in the tears streamed down your face. And with that, he turned and left.
The follow up appointment was the worst experience of my life. The plan was to give you 6 months of a prostate cancer drug called Zoladex. It would throw you into a deep and immediate menopause to “give you a break” from your menstrual cycle. The expectation was that 6 months after that you would have a complete hysterectomy.
That meant that they would remove not just your womb but your ovaries. The thinking being that if you got ovarian cancer in the future your insides were such a mess of adhesions that they wouldn’t be able to recover the ovaries.
There was no guarantee that a hysterectomy and oophorectomy would get rid of the pain or the endometriosis and that there was “no possibility that you will be able to have children”.
I have reflected on this conversation many times in my life. I have wondered whether a discussion with a man about the surgical removal of his balls which may or may not stop his pain would be addressed in such a glib fashion and be seen as a ‘normal’ treatment.
To this day even the word hysterectomy offends me. The link between hysteria and gynaecological conditions is outrageous and should be left in annals of history.
After a great deal of reflection, tears and discussions with Dian I decided to give you the Zoladex. In tandem I would remove all gluten and wheat products (even gluten free wheat products) from your diet, all cow’s dairy products, all meat, all caffeine and alcohol and eat as organically as possible. When the Zoladex was over we would start with supplements to help support and rebuild your digestive tract and immune system.
The Zoladex was worse than I ever could have imagined. I’m so sorry that I put you through it. Every four weeks a nurse would pierce your abdomen with what can only be described as the inside of a bic biro and place a drug pellet in you. If the nurse was rough it would leave you with a melon sized black bruise across your tummy.
The drug induced menopause was hell. You gained two stone and were permanently hot. I say hot, I mean you were burning in the raging fires of hell. Rivers of sweat would track their way down your face and drip from your chin. The embarrassment of trying to explain when introduced to someone new was too much to bear.
The six months passed eventually. Dian and I started work on putting your broken and bruised body back together. The nutritional supplements were planned, taken in handfuls three times a day, and little by little you got stronger.
I wasn’t prepared to let them cut chunks out of you. The prophecy of a hysterectomy and oophorectomy within 6 months just made me want to prove Mr Sausage Fingers wrong.
I made the decision then that unless you had cancer we would battle on intact. The wedding was brought forward in the hope of just one round of IVF.
Little by little you improved. By the time of the wedding you were well for the first time in an eternity.
The next summer you rewarded the gentle care and love that Dian and I had shown you with a beautiful baby girl. And another the summer after that.
I was happy and I loved you.
I didn’t mean to forget about you. I didn’t mean to stop putting you first, but I had two children under 13 months and everything I did, every ounce of effort that I had once given to you I gave to them. Somewhere in my head it felt like to do otherwise would have made me a bad mum.
Looking back now I wish it had been different. I should have lost the baby weight as soon as possible. The years went by and life got bumpy and instead of treating you with kindness I fobbed you off. When you were stressed I gave you alcohol, when you were sad, emotional or tired I gave you a sugary ‘treat’.
The self-loathing led to diets where all effort was focused on a quick result (3 weeks was my maximum attention span) or ridiculous exercise regimes that were only ever going to leave you more broken.
You rebelled, and over 18 years you were hospitalised with urticaria (when I had to sign consent forms to pump you full of unauthorised levels of antihistamines), had multiple surgeries to remove ovarian cysts (roughly every couple of years) and a grapefruit sized fibroid. I found surgeons who listened, who let me lead the way, who believed that I knew you better than they did: the wonderful Richard Penketh in Wales and, when we moved, the extraordinary Angus Thompson in Worcester.
Both discussed hysterectomies, both received long emails of questions asking about the risks of heart disease and early death if I let your ovaries be removed before you were 40. They smiled gently at me when I was bloody minded and intransigent about cutting you up. Both treated me as an equal in our partnership which revolved around your care.
Yet somehow I never found the time to really put you first. I had a litany of excuses: work; kids; too much to do; too tired; too ill; too difficult; simply unable to lose weight due to some undiscovered reason and age/hormone related impossibility.
So we started to ignore one another, existing in the same space but never really engaging. I lost the joy that I once found in nice clothes, I forgot what it felt like to feel confidence in you and you were just saddened by my neglect.
You still suffered with endo pain, not as frequently, but it could make you drop to the floor with the sheer magnitude of the shock or blanch during an important meeting. I became very good at covering for you; digging my fingernails into your palm to deflect my attention.
I knew that losing weight would help you. Each time I embarked on a new quick fix I promised you that things would be different “this time”. You always believed me but I always let you down. Until this time.
Seeing a close relative being diagnosed with secondary cancer (following bowel cancer) and observing first-hand the horrors and cruelty of what follows I knew that I had no choice. I had reached the end of the line of excuses.
The quest to “lose weight” (horrible misleading phrase that it is) became a quest to get healthy; to find a level of strength and fitness that would ease the aging process. I realised that it was no longer about wanting to look good like it was in our twenties, it was about ensuring that I reduce your risk of cancer as much as I can.
I haven’t looked after you in the way that I should. I haven’t cared for you in the way I would have looked after a child or a friend who needed help. The last 56 days have taught me that you are not a lost cause; I am ashamed that I didn’t help you sooner and I am in awe of the way in which you have blossomed with the right exercise and food.
I’m sorry that I haven’t put you first over the years and that it has taken me so long to realise that without you I really am nothing.
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