My story began a few months after my 10th birthday. I was horrified to get my period, years ahead of my peers. The pain was dreadful, I was constantly drained & exhausted, but I just thought that was due to the type of person I was. By the age of 15, my periods crippled me. For 2 weeks a month, I could barely do anything. I was admitted to hospital on a number of occasions with suspected appendicitis, such was the extent of the pain. Nothing was ever found, as endometriosis can be so difficult to diagnose.
I was dismissed by many, including medical professionals, calling me dramatic, malingering, time wasting & insinuating I was lazy. I was driven to believing that the pain I was experiencing was normal, that all women had this pain, that to feel like you have the flu & can barely stand up for 2 weeks before your period was normal. I believed that I just had a low pain threshold, that I just wasn’t a very motivated or energetic person, that I was lazy. I had very little confidence in myself & was so unhappy for a lot of my life.
I managed to keep going, successfully achieving the grades and qualifications I needed at school and university, to become a secondary school teacher.
Teaching is a hard job, but I was exhausted, I picked up every infection, cold, flu, stomach bug from the kids, as endometriosis can weaken your immune system. I started to see a new GP and decided to bring up my continued abdominal, leg and pelvic pain once again, having been too scared to mention it to doctors for a long time, for fear of being branded mentally ill & time wasting again.
Luckily, a diligent GP recognised the symptoms as endometriosis, but the only way to formally diagnose this was through a diagnostic laparoscopic procedure. This was done and a diagnosis of endometriosis was confirmed. I couldn’t even say it, let alone know what it was! They told me to go on the pill, without the usual week’s break and that should sort me out. It didn’t. I continued to bleed throughout and the pain became worse.
Again, I tried to keep going, trying to keep my job, my social life, to be a normal young woman in my 20s.
However, I missed out on so much due to needing time off work (my school has been amazing and so supportive and I know I’m lucky there). I lost friends, because they got sick of me cancelling on them all the time and my relationships broke down. Every 2 weeks a month I was crippled in pain and I could barely do anything. I was so used to the pain, that when I had tickets for a Kings of Leon gig, I dosed myself up on painkillers and kept going because I had been looking forward to it for so long. I didn’t want to miss out yet again.
The next day I had to drag myself into work but was then taken into hospital as an emergency case. I actually did have appendicitis, but it felt so similar to the normal pain I just didn’t really notice it, until it burst, making me incredibly unwell. They found that endometriosis had covered my pelvic organs, but because it was just emergency surgery and endometriosis required a specialist surgeon, the surgery was very limited, leaving me in more pain than ever before and without a plan to move forward.
I was left on waiting lists for months on end, but because the endometriosis was so extensive, it required multiple procedures. I would come round from the anaesthetic only to be told that some of it had gone but there was more remaining, that hopefully it would be good enough to feel some improvements, but it never was.
I have had so much surgery to remove the endometriosis.
I have lost my uterus, ovaries and had a stent put between my kidney and my bladder. My bladder is damaged and I frequently pass blood in my urine. It is incredibly painful to empty my bladder, my bowels are scarred and stuck together with adhesions. The scar tissue that forms around my internal organs from the endometriosis covering them will hurt forever. I lost my fertility as my fallopian tubes have been destroyed by endometriosis. I went through futile, painful cycles of IVF, until I was told there was no way I would ever be able have children, as my body was so ruined by endometriosis.
Ladies with endometriosis feel exhausted all the time. We are suffering from internal bleeding and scar tissue building up in our bodies, which presses on nerves and creates shooting and ripping pains throughout our bodies, not just in our pelvis, but everywhere, as nerves are of course connected to other parts throughout our bodies. I always had shoulder and neck pain growing up. I understand why now. Endometriosis isn’t period pain, it’s pain all over our bodies.
We have to be careful what we eat, as frequently our bowels don’t work properly and bowel movements can feel like barbed wire being dragged through our bowels. Standing for long periods, can become incredibly painful, compressing everything in our pelvis and back, making the pain worse. It’s difficult to sit down or lie comfortably, and women and girls can become confined to wheelchairs because of the disease and the adhesions & scarring it causes. In short, it’s miserable.
I’m sharing this because we owe it to our girls to prevent them from going through what I and what 1 in 10 women in Britain have gone through and are currently going through.
Each woman that has endometriosis won’t have the disease to the extent that I have had it, which is where some of the confusion comes in. Some women go on the pill and everything is ok for them, some women don’t know they have it, until they fail to conceive, then the disease is discovered as the cause. It just depends on which nerves or organs are affected.
However, my story is not in any way unique. I was shocked when I joined groups for sufferers, at just how common my story is. I couldn’t believe that I was meeting women who had been treated in the same way as me and let down by the conventional medical approach.
There isn’t a cure for endometriosis, but with early detection and possible good surgery, it can be cut out and controlled, allowing the sufferer’s life to improve.
Sadly, there are very few endometriosis surgeons in the NHS. Money just isn’t spent on this area. I have written to the Health Secretary and my local MP about this. There are some planned developments, but it’s not enough.
The psychological impact of being ignored and branded as dramatic within the medical system is incredibly damaging. We need to believe and support girls who are suffering with the symptoms, get them the diagnosis and help that they need to understand and make allowances for their suffering, the same as is done for other illnesses. Then, maybe there won’t be so many missed days of work and school and the subsequent problems that follow.
Friends and family need to understand that it’s not being lazy or not being bothered when someone with endometriosis cancels repeatedly. I am lucky to have amazing family and friends, but speaking to some ladies suffering with the disease, they have become very isolated and their mental health is suffering as a consequence.
Endometriosis needs to be treated in the same way as any other chronic illness, just because it involves periods, isn’t a reason to brush it off as “women’s troubles”. We owe it to each other, to our daughters, sisters, friends, to recognise the symptoms and to offer support.