1 in 10 women (or people with uteruses) have Endometriosis. The average time for a diagnosis is 7 years, that is 7 years of pain and confusion. We are often disbelieved when we go to seek help, told our pain is normal. Things are changing and awareness of the condition is growing, but not fast enough. I posted about this on my twitter account several days ago, it received a huge response and so many people shared their stories with me. I was heartened but also saddened that this is still such a problem for so many. Here is my story.
I started my period in my first year of Secondary School. I was well prepared, the women in my family have always suffered with their menstrual cycles and I’d seen it so I knew what was going to happen. However, I found the pain really hard to handle, my mother was sympathetic and treated me with painkillers and a hot water bottle.
The first inkling something might be different about came from the length of my period. At first they were very erratic, I wouldn’t have one for ages then I’d bleed for a fortnight. Eventually it settled into routine of a two week period every, single month. I was in so much pain, often very weak and suffering from an inability to focus during it. My mother took me to the GP. The male GP told us that might be something serious, like leukaemia. There were bloodtests and diaries and several appointments. Eventually they ruled out the nasty things and settled on “Oh well, periods are just hard”. There was also some mild anemia so I upped my iron intake. He also suggested I went on the contraceptive pill to control my periods.
My mother said it was my body and my choice, she talked through it with me doing her best to give me all the information. I was so embarrassed talking about it with her and I was not yet sexually active. None of my friends had these issues and I didn’t hear anything about this stuff at school. I was worried about taking the pill as I’d heard some things about cancer, and I just didn’t understand enough. I felt messing with nature was wrong. So I opted not to take it and carried on weathering the pain. I was around 12 years old at this point. At 14 it got much worse, so I told my mother I did want the pill after all. It didn’t help the pain but it did stop me bleeding for two weeks at a time and I could control when my period came. It meant I could begin to organise my life a bit. I made sure not to plan anything during the 7 day period break in the pill cycle. If something big was coming up, like a night out or an exam, I could run the pills packets together essentially skipping the period. I would still bleed a little but I could cope with life. I had some control back.
Things settled and I coped. I was keenly aware my friends did not need to stay home when they had a period. I felt like I was weak, periods are natural, everyone has them, why am I such a baby? At university it carried on, I went back to the GP a few times but they insisted nothing was amiss. They gave me slightly stronger painkillers but that was it, I just had to learn to live with the snarling beast that lived in my womb.
In 2005/6, in my mid 20s things really kicked off. By this time something was really, very wrong. The pain was often unbearable, the periods so unbelievably heavy, the pain was not limited to cramps either, it was everywhere. Sometimes it was so intense I fainted so I often had bumps, scrapes and bruises from that. I also started to get recurrent kidney infections which also brought a world of extra pain for me. This time the GP was a woman and she thought I might have PCOS and so a consultant appointment as set. In the meantime the kidney infections kept coming, at one point the presumed PCOS was masking the kidney infection so they didn’t realise it was still there and I ended up dehydrated and hospitalised.
You might have assumed that being admitted to hospital might finally find me some answers. They treated my kidney infection and a really lovely consultant spent a lot of time drawing me diagrams and explaining what was wrong in my biology that was causing my repeated infections (leaky valves between the bladder and kidney). He also seemed very sceptical about the PCOS diagnosis. There were tests and more tests and assurances I’d be fine. I spent a majority of this year lying o a sofa, convinced I must have something seriously wrong with me and feeling frustrated no one would listen to me.
Around a year later I finally was able to see a gynaecologist, I have no idea why it took so long. She was a woman, not that it should matter, but she was so incredibly kind. She could see the toll this was all taking on me and she re ordered all the tests again. For months I kept going back (I was living in rural Wales at the time and my nearest hospital was a 45 min drive away, so if my boyfriend wasn’t able to take me I was begging lifts from friends and family) with no answers. Obviously I had been doing my own googling and proffered my suggestion of Endometriosis. I was told this seemed unlikely, but various other things like cancer were occasionally thrown around and seemed less likely to me! Eventually the gynaecologist suggested I should have a Mirena Coil or IUS to control my periods.
As I was under the care I went to hospital to have this done. I had always struggled a bit with tampons and pain during sex but I just thought that was normal. I’d never had children so she warned me this would be ‘uncomfortable’. It was one of the most horrific experiences of my life. She really fought to get it in, I was writing and screaming in pain. Actually screaming. Two nurses held me down, one was trying to be reassuring and kind, the other was dismissive and essentially told me not to make a fuss. Suddenly I went floppy, the gynaecologist realised my heart rate had dropped and I had gone into cervical shock. She quickly aborted the attempted insertion and they dipped the table so my head was very low. Once they thought I had come back round enough they attempted to help me off the table but I collapsed a little. They kept me there for hours and fed me sweet, black coffee until I was able to walk. I went back to my boyfriends house afterwards so he could keep an eye on me. And thank god I did because he found me collapsed on the bathroom floor later that night, in pain and bleeding.
The gynaecologist suggested I should have the coil inserted under anaesthetic and that’s what happened. It did infact help as, although I bled a small amount, my periods were much reduced. Over time they would go completely. I still had random pain that I was unable to explain, I still had pain during the time I should have had a period but the medical professionals assured me this was normal. I was discharged from the care of hospital.
I moved to Bristol, it was now 2012, I was still having problems but had come to believe that I was just really bad at dealing with pain. My large tattoos should be enough evidence that this is not true, but I thought this was the only explanation. I was assured it was ‘normal’ by doctors, they must know. I was also dealing my diagnosis of Obsessive Compulsive Disorder for which hypochondria can be a symptom, so I told myself my obsession with this pain was not normal.
One day I was at my new GP in Bristol talking about my OCD. I explained my mood was low and I was worried I was obsessing unhealthily over tis pain. She immediately started to question me about the pain, I told her everything, about the pain, the heavy bleeding, the brain fog, the fatigue, the fainting. I told her I often threw up from the pain and would spend at least a day a month curled up in my bathroom wanting to die. I told her the doctors at the hospital had discharged me after ruling everything out. In a moment I will never forget she reached out and touched my arm, “Fainting regularly because you are in pain and spending time curled up crying on your bathroom floor don’t sound normal to me”. I wept in relief. She suggested Endometriosis immediately, I told her I had suggested that but no one had believed me. She also suggested other things and said she would refer me to the hospital. I was so unbelievably happy to know in that moment I wasn’t mad.
I swiftly saw a consuktant, a few tests later and they were reasonably sure it was Endometriosis. To know it was real helped me process it so much better. I now knew I had soething that doesn’t just go away, is hard to treat and would likely cause me problems having a family. But I also knew that it wasn’t in my head, that the extreme pain was actually extreme pain. Far from being weak I was strong and brave to have got this far. Suddenly I felt more powerful and in control of my life again.
There was the end of one relationship and the start of a new one (with my now husband) at this point. The added complications of this condition meant I had to have uncomfortable conversations early on with him about my body and it’s problems, about my fertility. Something I didn’t really want to do in a young relationship.
Scans had convinced my consultant that it was endometriosis but the only way to accurately diagnose it is with a Laparoscopy. I have now had a lap and two surgeries so far with my endometriosis. The last one being the most successful leading to three blissfully pain free years. Unfortunately in 2018 it came back and we are now watching and waiting, because of it’s very inconvenient location, to see if more surgery is an option.
The main point in recounting my story is to impress upon people that if you feel something is wrong, keep pushing, don’t just put up and shut up. Excessive pain ruins your life and it is not normal. I have learnt from this experience to advocate for myself and my newer diagnoses of Asthma and Hashimoto’s Disease have benefitted from this and I have received help swiftly.
For transgender people there are often other barriers to diagnosis and care as medical professionals may not immediately recognise it or offer it as a diagnosis.
Find out more and how you can help here: https://www.endometriosis-uk.org/understanding-endometriosis