Guest Post: Alice Griffiths, My EndoLife
I was diagnosed with endometriosis at the age of 19 (I am now 27 years old), it took me around 5 years to finally be diagnosed and I was diagnosed via laparoscopy after a cyst had ruptured on my left ovary.
At the age of 14, I had my first period. I suffered from very heavy and painful periods that would normally last around two weeks. During my period I would often pass out from excruciating pain and vomit most days, causing me to take time off of school regularly. After speaking to my friends and family about my periods, I came to realise that what I was experiencing was not okay.
I went to see my GP numerous times to ask for help, but was always told that what I was going through was completely normal, that every woman experiences pain and that I was no different from the rest. I was then put on the contraceptive pill as I was told this may help and to take paracetamol as and when I needed it for pain.
After suffering in silence for 5 years, at the age of 19 I was rushed into hospital with severe abdominal pain, which they suspected was appendicitis. I had a transvaginal scan to reveal I had a large ruptured cyst attached to my left ovary and was told I would need a laparoscopy to remove the cyst. Once woken from my surgery, I was told that I had a condition called endometriosis, as well as POS (Polycystic Ovary Syndrome), something that I had never heard of before, so naturally was very upset as well as confused. I was told the endometriosis had spread across my abdominal organs, causing my left ovary; womb, bladder and bowel to all join together and were stuck to my left pelvic wall. The surgeon performed laser treatment during the laparoscopy to remove the endometriosis.
I have now had 7 laparoscopies in total, including removal of a second "Chocolate Cyst” on my left ovary, biopsies on my cervix, removal on part of my cervix due to endometriosis scarring and removal of endometriosis on my sciatic nerve.
A bad day for me is having such bad pain and sickness that I end up in hospital, with a drip in my arm giving me morphine and fluids. I suffer from extreme pain in my abdomen, pelvis, thighs and back. The pain becomes so strong I vomit. A good/normal day for me normally consists of being able to go to work and manage my pain via painkillers. My pain can vary, so painkillers I take are normally paracetamol or tremadol, depending on the severity of pain.
Suffering from severe fatigue is an everyday battle. Even just getting up, dressed and traveling to work makes me feel like I could sleep for a week! Endometriosis has affected my life in all aspects. My daytime activities are now determined by how severe my pain levels are and if working around hospital appointments for gynaecology check ups and scans. I am no longer able to drink alcohol without it causing my endometriosis to flare up, as well as certain foods types. For me wheat, refined sugar and dairy cause most irritation.
I am extremely lucky to have a very caring, understanding and patient boyfriend who knows that at times, being intimate can be very painful and uncomfortable for me and that some nights all I want to do is curl up with a duvet and sleep. He attends my hospitals appointments as and when he can and also has researched the disease to have a better understanding of it... Which I recommend everyone to do who has someone in their life that suffers with this invisible illness!
It is also very hard for friends and family to understand why I sometimes have to cancel last minute plans because of pain or just pure exhaustion. It can put a strain on these relationships, as the illness is not all that visible on the outside a lot of people will assume if you don’t look ill, you must be fine. I would say to anyone who knows someone with endometriosis, be patient with them, ask questions if you don’t understand something about the condition and to always remember, endometriosis is an incurable disease, that is not visible from the outside, but just because someone looks okay, they are most likely battling pain daily and trying their best to live a life as “normal” as they possibly can.
I manage my symptoms daily by taking prescribed painkillers at night called Nortripyline; it helps with my pain as well as helping me sleep. During the day I take over the counter painkillers as and when I need them as well as using heat pads on my back and abdomen to ease pain. I regularly go through ups and downs, when dealing with this condition. At times I feel so strong and like I can take on the world and other days I have a good old cry and suffer from severe anxiety. I worry about leaving the house to go to work/see friends/go on holiday, as I am afraid and embarrassed that I will be in pain and become sick. I have a very close relationship with both my mum and boyfriend and if ever I feel down, I share how I am feeling with them. Sharing your thoughts and feelings with someone can feel like a weight has been lifted off of your shoulders and makes you feel not so alone. Online support groups are also very helpful, you can talk things trough with people who are going through the same thing as you, share advice and make friends, all from the comfort of your own home and behind a computer screen!
My message to the NHS and doctors would be to raise more awareness about the condition. For something that is very common amongst women, it is not spoken about nearly as much as it should be. To make the condition and symptoms known in hospitals/schools/ local GP surgeries and to take patients seriously when they come in search for help.
I hope that one day a cure will be found for this debilitating disease, that there will be a way of diagnosing it other than via laparoscopy and that the NHS will soon bring more gynaecologists in to hospitals that specialise in endometriosis. I also hope that endometriosis will soon be recognised for how debilitating it is within a workplace.
To the young women who are currently being diagnosed, do not let anybody tell you that what you are going through is normal; no one knows your body better than you do. You aren’t alone in this and being told you have endometriosis does not mean you cannot have babies; this was once a fear of mine, but so many women who have endometriosis have successfully conceived and given birth to beautiful, healthy babies.
I would say to women with endometriosis, you are not alone with your suffering. Never suffer in silence and to stay strong. We will fight this together!
Words by Alice Griffiths