Endometriosis Awareness

Those of you who know me will know that I suffer with a 'few' health complaints but none have caused more misery and pain than Endometriosis.

As part of Endometriosis Awareness Week I have decided to theme my nail art and also write up my story. I'm not sure if this is a wise move but I would like to help others understand the effects this illness can have on those who have it. Although each story will vary, I can only share my experience. If you do read this, thank you.

"Endometriosis can have a devastating effect on quality of life due to the painful symptoms; it is the biggest cause of infertility in women, and it carries a huge personal and societal cost!" - endometriosis.org

Why isn't it taken more seriously?
Labelling and poor understanding probably. 'Girls problem' or 'womens issues' generally prompt the thought of hormonal, middle-aged women complaining about some stomach cramps. This is not the case. Generally it is hard for people to sympathise with something they cannot see. Others perhaps presume you are 'making a fuss'.

Why is it such a huge problem?
The diagnosis is incredibly difficult. "Endometriosis can only be confirmed with a surgical examination called a laparoscopy." - NHS UK. The average diagnosis time is 7.5 years.
The symptoms can vary in severity. Some people that have it claim to 'feel nothing' which makes it out to be a non issue as opposed to those who are crippled by it. 

I desperately hope that a faster way is found to diagnose Endometriosis.

My Story

Problems of this nature generally start at a young age.

I was diagnosed with PCOS (Polycystic ovary syndrome) at the age of 14 after prolonged abdominal pain and illness. The cysts were so large they needed an operation called a laparoscopy with 'ovarian drilling' (ick!). All the illness impacted quite heavily on my school life. Unfortunately, the PCOS continued to return and needed further operations. As far as I was aware, this was all that was wrong at the time.

I remember it being just after my 21st birthday and I was living in London. The food trouble started again (IBS), only worse. Most things I would eat would cause almost instant, crippling stomach cramps followed by nasty diarrhoea. These episodes basically felt like my tummy was burning and being ripped apart from the inside with an acidic cheese grater. The pain spread from just under my ribs, through the base of my spine and down my legs. If it happened while at work I would just cry and curl up on the floor of the office toilet with my coat and hot water bottle for hours. I even remember being on the floor of a Victoria Station public toilet in agony, but there was nothing else I could do. Food became impossible so my GP put me on food drinks and referred me on to various specialists. I ended up losing over 3 stone. I had to move back home but continued to try to commute to work. This became more and more difficult as I'd be glued to the toilet for so long. Sometimes the pain would start on the train and utter panic would set in because once it started there was only a very short period (30sec-1min) of time before needing to be in a bathroom. I would often be curled up in the corner seat of the train crying due to the pain and praying that the journey would be over. Crapping yourself in front of a train full of commuters doesn't bare thinking about. Though, when you have this, you have no choice. Car, bushes even plastic bags.. You have to do what you have to do and I can't explain how lonely, humiliating and demoralizing this was.

I really didn't understand what was going on and why it was this painful. My tummy felt like it was bursting. Painkillers were mostly useless at that point so you would literally have to burn your tummy with a hot water bottle to get any amount of relief. This went on for years.

I saw a psychologist who told me it was my brain was creating the pain because of anxiety, a Gastroenterologist professor who told me it was anxiety and depression, a pain therapist who told me that if I imagine the bowel to be working smoothly the pain would ease, another Gastroenterologist who told me this was 'nothing physical' (endo does not always show on scans). Let's clear one thing up that the Dr's couldn't grasp, I was depressed because I was in constant, horrible pain that I could not control, not the other way around! Scans and excruciatingly painful, humiliating procedures that revealed nothing. I tried everything the Drs asked me to do.

They pumped me full to the brim on various antidepressants, anti-anxiety medication, anti-spasmodics and CBT courses. I think at one point my prescription had reached about 9 different medications. Nothing helped. In the end I had tried everything to carry on working but it was impossible as most days I could not leave the house. I now utterly hated my life and I couldn't cope with the pain day and night. That was it, there was nothing more to try. I had to accept this was my brain doing this.. what more could I do? Dr's tell you never to do this but well, if I hadn't, my life would be very different. I asked Google.

The very first thing that came up was Endometriosis. At this point I had never even heard of it. It was only years later I found a post-it note with 'Endometriosis?' on the back of a letter from the gynae who performed my lap at 14. I had a read or endometriosis.org and it all sounded scarily accurate. I ask my GP if she would refer me back to a Gynaecologist. By this point my GP is incredibly sympathetic and agrees to do so. Soon after I see a female gynae consultant who looks at the information I have, listens to my symptoms and tries to do some examinations but this proves too painful, so that's scrapped. She says 'I don't think this is endo or PCOS but we'll have a look', and suggested that it's a Gastroenterology problem. Again, I go for a ultrasound and by now, I can recognise the cysts on the screen.

By this time I am 25 years old. Another laparoscopy was done to sort our the PCOS (again) and after four years of being told by doctors that the pain is in my brain, Endometriosis was diagnosed. On waking up from the anaesthetic I was just shaking violently and in pain. My other operations hadn't felt like this. I was sent home, the recovery was very slow and I was in bed for weeks. I explained all the problems I had in a post-op consultation but was told that there was only a little Endometriosis, nothing to worry about and the pain wasn't related. She put me on the pill, even though I said it gave me migraines she said it's the 'only treatment plan'.

The pain in my stomach started again only this time it had reached a new level. I remember yelling to my parents not to call an ambulance as how the hell would I get away from the toilet, take it with me? I thought it might stop, or calm down but the ripping felt worse and worse. Absolutely nothing helped and I was on the toilet screaming. I remember thinking 'Oh my god, I'm going to die like Elvis on the toilet!'. I honestly believe that I'll never feel anything that painful again in my life, I hope not at least. Dad said we have to go to hospital, so we go. In A&E they give me morphine - oh my goodness it was amazing, I cannot explain the relief.

The female consultant who had performed the operation came along and told me that the pain would have nothing to do with Endometriosis or the operation and that I should go back to Gastroenterology. Where have I heard this before? The pain didn't get much better and neither did the situation. I could still hardly walk and spent most of the time in bed.

The Dr's seemed to have dismissed any responsibility so we expressed our annoyance to the hospital who arranged a meeting with the matron and consultant. The consultant turned up late and the matron didn't turn up at all. The consultant explained again that she believed it was Gastroenterological, so I asked her if she'd checked there was no endo on the bowel. She explained that it wasn't possible to do that without performing an operation that would open me up from rib cage to belly. She said she would order a CT but there would be a lot of radiation. I don't really understand.. if Endometriosis didn't show up in scans before, why would it now? So, we waited.. Not really knowing what to do. I was stuck right back at the beginning again.

A short while later I was contacted by a lady via an Endometriosis group who urged me to go and see her Gynaecologist who was apparently an endo expert. That message from her really did change my life, thank goodness! I got an appointment and it was like a breath of fresh air after 4 years of soot. He seemed to know my symptoms before I'd even finished explaining and he could feel that my organs had been fused together. After yet another laparoscopy he explained that the Endometriosis had spread all over my abdomen and bowel, my uterus was fused to my bowel with scar tissue/adhesions and the bowel had been hitched up either side with scar tissue which was 'strangling' it. Basically when I was trying to eat, it was all trying to pull apart. This doctor was, and remains to this day my miracle doctor. This was all done without having to cut me wide open as the previous gynae had insisted. It makes me ill to think of what state I'd be in now if I had believed what she was saying. I was on my feet a couple of weeks after the operation. It took quite a while to manage the general pain but over the months that got better and better. I was prescribed Danazol, Tramadol and Codine with Amitriptyline to work in conjunction with the mirena coil (now changed to depo injection) for longer term treatment of the pain and control of the Endometriosis.

So the lessons learned from this:

1. It wasn't anxiety! This appears to be a Dr's general diagnosis if the answer isn't immediately obvious.
2. Sometimes there are doctors who really don't know what on earth they are talking about regardless of rank. Covering their own back is more important than actually listening to the patient and assisting with a diagnosis.
3. The medication regarding anti-depressants were irrelevant and should not have been taken.
4. Looking on the Internet for answers can be a life changing experience, regardless of the bad press it gets from doctors/sheep. This could be because it allows patients to educate themselves about conditions the Dr isn't even aware about. We all know why it's bad but anyone with a small amount of intelligence or sense can weed out useful information from ill people using forums to vent their frustration.
5. MOST IMPORTANTLY: There is hope. There are real specialist doctors out there with a huge amount of skill. Finding them may be the hard part but try not to lose heart if you truly believe you are being fobbed off.

There are good days and bad days still but each morning I wake up and I'm so so grateful that I'm not having to sear my tummy with hot water bottles, dosing myself on tramadol and keeping spare clothes and plastic bags in the car.

Endometriosis UK: http://www.endometriosis-uk.org/

The nail art above is inspired by the artwork for this years campaign by Kaye Sedgwick.