I had a hysterectomy 5 weeks ago after a long, tough and painful 19 years since this all started. With amazing support from my parents and a few long-suffering supportive friends, I fought my way (fairly blindly at times) through Stage 4 Endometriosis, Adenomyosis and severe & recurring fibroids. A nightmare triple whammy of womb hell (a phrase coined by my consultant surgeon in disbelief when he was able to finally diagnose me). 

For this reason, I will be walking 10 x 10k this March, which is Endometriosis Awareness Month. I may well be mad to attempt this so soon after surgery, but my doctors say as long as I take it easy, I should be ok. To be honest, I used to over exert myself far worse when I was busy pretending everything was fine, trying feverishly to cling on to a successful career and a busy social life!! 

This is a LONG story, an essay even, and for that I am not sorry :) My story is here along with millions of others like me to help raise awareness for this horrible condition and also shed light on the tireless campaigning of Endometriosis UK and its amazing network. 

I was only 'officially' diagnosed with my triple whammy of issues three years ago at nearly 31 yrs old after HUNDREDS of visits to doctors, hospital stays, A&E trips, specialist appointments - starting at just 14 years old. 

At 14 I started to have really heavy, really painful periods. After a few trips to the GP I was put on the pill and told it was normal. I used to be so tired I couldn't move but didn't know why, had constant viruses and colds, high fevers and fits and during my period I would often pass out and throw up. I couldn’t go to school for long periods of time. I couldn’t go to lectures at uni. But these periods were never ‘clinically’ linked to my actual periods. I was lucky, privileged even that my parents were able to afford to send me to specialists all over the UK to try and figure out what was wrong with me, but nothing was ever diagnosed. Eventually, after endless tests of every sort imaginable, there was still nothing conclusive, so I was diagnosed with post viral fatigue syndrome, and ME. 

No links between my period issues and my other symptoms were ever made or even suggested by the doctors I saw. I even saw a gynaecologist at 15 because my mother had severe endometriosis and it can be hereditary, (she has always fought for me to be diagnosed) but the gynaecologist did an ultrasound and said definitively that I did not have endometriosis. I now know that endo can only be diagnosed and found by an invasive operation, which I didn’t have until 2018. 

You might think this story sounds extreme but that's the worst bit - I am by no means alone in this never-ending cycle of desperately seeking and repeatedly being denied a diagnosis. There are millions like me who have also struggled to have their pain recognised or treated, and millions more who are still struggling now. Constant pain irrevocably changes your life, your outlook and your ability to function. You begin to doubt everything you know, your brain starts to tell you you aren’t worthy, it must all be your fault somehow, and the mental health spiral it sends you into can be terrifying. It takes serious strength to try and stay positive and keep laughing when all you want to do is cry. Having your pain dismissed by medical professionals time and time again is completely soul destroying. 

Up until my diagnosis, I spent years suffering in silence most of the time, desperately trying to hide the extent of my mystery chronic illness from those closest to me, friends, partners, employers and quite literally everyone I ever met. The carefree, fun me I was when I wasn't in pain was being chipped away at by the excruciating pain, and I didn't want to let that show. 

There is a very dangerous, real and very unfair stigma around chronic illnesses, not to mention undiagnosed ones. Those who don't understand what chronic pain is like can't help but occasionally paint you as a drama queen, a hypercondriac, high maintenance, difficult, a debbie downer or worse, an attention seeker. Especially when (like me), you don’t want to tell people what is going on. If you don’t feel you can properly explain to people why you are the way you are or can't join in on normal activities (for fear of judgement), other people will make assumptions based on ignorance, not knowledge. That's not an easy thing to handle mentally and that is why I am fundraising to help raise awareness. For me, the stigma was so great that I stopped fighting for answers throughout my 20s and just kept going as best I could. Had I known more about endometriosis, and had there been less of a stigma, I would have been able to advocate better for myself and may have caught the disease earlier, before it reached Stage 4. 

Eventually I physically couldn’t carry on - I couldn’t even go for a walk without crying in pain. My fitness disappeared and I put on over 3 stone in weight, I was miserable and withdrew myself from everyone. Mentally, I was so fed up of being the 'sick' one who was in so much pain, so swollen and lethargic that I could no longer go to friends' parties, cope with a successful job, go on holiday or even function as a normal human being. My family home and my parents became my safe place where I could retreat to and heal when the world was just altogether too painful and unfair. 

At about 30, I re-started the campaign to get diagnosed, or at least figure out what was wrong. Seeing a therapist as recommended by a great friend helped me realise that this toxic and horrible shame and pain cycle HAD to stop. I had to advocate and fight for my right to answers and to medical help. 

At this point, I was lucky again. I had private medical insurance, an amazing female GP and a dogged determination to no longer let my pain control my life. Therapy made me realise that the way I was living, the denial I had perpetuated was only hurting my mental health, and I needed answers. From then, if I look back on it, everything happened pretty quickly. I was diagnosed as severely and persistently anaemic (from years of 3 week long heavy periods) and from this, my GP within a week referred me to an endometriosis specialist gynae surgeon. Now this speed was only possible because I had private health insurance. Those without have to wait months for an appointment alone, not to mention surgery waiting times. 

The first laparoscopic surgery confirmed D.I.E (deep infiltrating endometriosis) - an ironic at best acronym. I was also diagnosed with Adenomyosis and severe fibroids. The relief was immense and I started a surgical plan to have the endo excised as it was sticking together my internal organs and causing bowel and bladder problems. I naively thought that the two extensive operations would solve everything, but sadly they didn’t. My endo came back, the fibroids regrew within a year, far worse than before and there simply was no healthy womb tissue left. The artificial menopause drugs left me without very much memory of these years (for which I am grateful), but I have no doubt that this caused a long lasting toll on my mental health. I had another operation to try to help, but the story repeated itself and a year on, I was at my wits end. The adenomyosis meant that my womb was constantly and painfully swollen and although I had a coil fitted and was on the pill back to back, I was still bleeding heavily every day. I was so anaemic and exhausted I had to consistently make trips to the hospital, go on iron drips and have blood transfusions, but nothing helped. After about a year of this, not really being able to do anything because of the pain, I came to the very final-sounding decision to have a hysterectomy. Not an easy decision to make, but the only one that would allow me the possibility of a less painful existence. 

Just over a month ago, I had the ‘big’ operation and amazingly, so far, the pain has gone. I remain terrified of course that the endo will come back, (as it often does within 5 years for patients of stage 4), but I choose to be optimistic. I can’t have children now, but while that is hard to accept, it isn’t the end of the world for me. There are other options, and I am far more than just my womb or its ability to procreate. My life appears to be ahead of me again, not a distant memory of bygone years where I was once physically fit, healthy and happy. 

Endometriosis isn’t officially recognised as a disability (and there are arguments for and against that), but it is completely and utterly disabling. It doesn’t kill you, but at low points, I believed it would have been easier if it had. There is no treatment beyond surgical intervention, and no cure. I strongly believe that it is high time that more funding and support is made available so that future generations don’t have to go through what 1in10 are going through now. 

Will you support Endometriosis UK to #EndoTheStigma by taking on the 1 in 10 challenge? This Endometriosis Awareness Month we are asking our supporters to join in the 1 in 10 challenge to support the 1 in 10 with endometriosis. The money you raise throughout the challenge will go a long way in helping us support those affected to get the support and healthcare they need.