After over 30 years of suffering I made the momentous decision to end my fight with #endometriosis at 3 o’clock 23rd January 2018. I couldn’t live with the daily battle of trying to make a life, raise children and just about get through each day whilst 75% of my time is mentally and physically centred around this debilitating disorder. I remember when I had my first operation to find out what was wrong, I had come off the pill after 10 years in anticipation that I wanted children and had read that it could sometimes be difficult to conceive after the pill. It was then that I was getting tired and I felt a lump on the left side of my womb area.

 

 

I went to the doctors because my body was acting weird. I was worn the hell out and for someone that walked everywhere, I found that I was taking the bus more than I was walking and my periods were much lighter and not as regular as they used to be. I went to the doctors 5 times before I admitted myself to A & E because the last GP to see me said “I will refer you to the hospital after I come back from my holiday.” As it happens, she was going on holiday to South Africa. After 5 pee tests to prove that I wasn’t pregnant and that any potential pregnancy could be ectopic, I decided to admit myself to the hospital. 18 of my 32 years of pain was misdiagnosis of the condition. Putting it down to “period pain” when there was a proper name for this disease – such was/ is the dismissal of women and dare I say it – black women – and their gynaecological health. Anybody that has known me since secondary school would know how bad I had it and those who know me beyond social media will know how bad I have it now. I recall being at college at 17 and my friend who was training to be an auxillary nurse told me that Coca-Cola and paracetamol were a great way to get you “buzzing and take away the pain” (we were 17, she’s a much better nurse now). I found out that this wasn’t exactly true as a I sat down in the college canteen after taking 16 pills throughout the course of the day and still in pain THIS IS NOT RECOMMENDED. At this stage – it was the 1990s, I wasn’t aware that I had taken so many until I lay down in the canteen. It was on that day I decided that I wasn’t taking anymore pills to ease the pain. If I was in pain, I was in pain; if hot water and rum (Jamaican remedy) or a scaldingly hot water bottle wasn’t enough, then so be it. This condition has taken me down. On my worst days it’s made me question my purpose, my being and whether the battle is worth fighting. On my best days, the anticipation of pain is always at the back of my mind. It’s dented my confidence in a way that betray my smile and my enthusiasm for life.

 

 

I am truly blessed to have made it this far with those two little human beings that I affectionately call The Bunchkins as they are probably the only things that make any real sense to me in this life. Endometriosis has made it difficult to navigate parenting. Firstly, the anaemia has reduced my energy levels. I couldn’t play with the kids as much as I would like. Sometimes I would have to drive to get the children from school because the walk up the hill was simply too much – I was later hospitalised for an iron transfusion. When it came to periods, pain and the inevitable throwing up, the number of questions was too much to manage at times because along with the questions came their worries. This became increasingly difficult when their dad worked abroad and it was just two little faces of worry. There came a point where I just wanted to tell them what was happening but I knew that this would cause more questions that

 

1. I didn’t think they could handle.
2. I wasn’t able to manage their worries around my health on top of everything else and
3. I didn’t think it was fair for them to carry the weight of my health whilst not having their dad around to speak to.

 

I made the most of those times when I felt great and in some cases, I possibly over-compensated by trying to do the housework alone, by cooking easier and contentiously unhealthier foods. On some days it was just easier to order a pizza or pour some water on dehydrated noodles, than roast potatoes and cook some veg. Looking back I may be a little hard on myself but I do look back on that time with some regret of not getting myself together enough to cope better. It is only now in 2019 that I have decided that I am going to make those changes and start afresh because G*d knows I am not living the best life in the way that I would have wanted. It has almost made me feel like a fraud.

 

 

Don’t let the filtered profile pictures fool you. The smiles are real and in a lot of ways I’m now coming to accept that my face can actually really look good (another battle for another blog). I say all of this publicly because I know that I need to make better health choices (you can’t eat your child’s left over porridge and think that is breakfast) but I also want others to know that if your daughters periods are abnormal, question your doctors. Endometriosis and Adenomysosis are coming to the fore in terms of becoming more publicly recognised and hopefully our girls won’t have to go through 18 years of their lives with a dismissive diagnosis of “it’s just period pain”. It will also help them understand what choices are out there and what decisions they have to make concerning their physiological health. At this age, there is too much internal scarring and adhesions to make a hysterectomy possible for me. So I’ve gone back on the pill (temporarily) and a radical change in my diet as the way forward in the short-term. Eventually I need to get to the point of living an a healthy natural a diet and getting as much exercise as is possible so that I can live a pain-free life. I don’t want another night of waking up in pain nor another chocolate cyst. I give up the fight that I’ve been fighting and choose new strategies for a better quality of life.