My name is Michelle. I’m in my thirties and I live in the UK. I’ve lived with endometriosis for nine years now. Like many women with endo, I suffered with extremely painful periods (silently and not-so-silently) for over a decade.
My endometriosis story
I was a regular at my doctors surgery complaining about the insufferable pain that I experienced month after month. Pain that would double me over in agony, cause me to vomit and pass out. It was violent pain that no woman should have to experience. It wasn’t until I developed the horrible, twingy pain that endometriosis caused in my early twenties that I realised something wasn’t quite right with me, that this worse pain with no pattern (which I started to dread not every month but every day) was part of something larger.
Getting my endometriosis diagnosis
I had my first laparoscopy in June 2010 to diagnose me formally with Endometriosis, but that was after months of pain that frankly scared me and came totally out of the blue. The reassurance I got from having a name for what I was experiencing was short-lived, when it dawned on the rest of the world that my pain wasn’t it all “in my head” and my period pain wasn’t “normal”. Almost a decade of pain, fatigue and general health problems finally made sense, and was oddly comforting, but as time passed the realisation of having an incurable chronic illness started to weigh me down.
Further conditions: fibromyalgia and joint hypermobility syndrome
Several years into my life with endometriosis I started to develop new pains all over my body that could not be explained solely by endometriosis. After four years of tests and doctors appointments I was diagnosed with fibromyalgia in 2017, and I also have joint hypermobility syndrome which was diagnosed in 2015. All three conditions constantly fight for my attention. I am in pain every day but I can also feel the differences in some of the pain and symptoms I experience.
At the moment my fibromyalgia pain is the worst pain, and the endometriosis pain is the calmest.
So through the last few years in particular I have begun to realise that endometriosis has the potential to complicate your pain, to change the sensitivity to pain in your body, and cause you to develop other problems and conditions.
I have a happy life, but my all three of my conditions makes little things like having a normal, healthy life a constant battle with my body. I work every hard to manage my pain and I’m successful at it, so good people constantly forget that I am not well.
That’s my story, but it could be anyones with this illness. Endometriosis is a silent shadow on my life, which could be pulling me down, but ultimately forces me to be more inventive – finding bigger and better ways to stay positive and appreciate both my life, and the things I have accomplished despite my illnesses.
Why I’ve made this website
I am not a doctor or medical professional. My experiences on this website come from years of daily experience with endometriosis. I know first hand what this disease can do to the human mind and body. I aim to share my experiences of living and working with endometriosis to help others, and to help with my own ability to cope with the pain and fatigue.
I will also share what advice I have for managing multiple conditions (with different symptoms). I mostly manage with pain self management and exercise. Life with chronic pain is hard and the solution to managing it can be equally tricky. However the hardest part is starting and finding out how.
So endometriosis has many far-reaching implications on the life of a sufferer, and the loved ones surrounding that person. I hope to share what I have learned, to prove that there is hope for endometriosis sufferers, to show that it’s perfectly possible to live happily and successfully with this disease (and others). Crucially I also want to provide advice for the darker days when that’s easier said than done.
I don’t drink or smoke. I am a healthy weight with a healthy body mass index. I have good diet, and in 2016 I became vegan after being vegetarian for many years. I chose to do this for ethical and sustainability reasons. I cycle every single day to give me relief from my endometriosis symptoms. I don’t drive, I don’t sit down for long periods of time (I have a standing desk).
More information on how I manage day-to-day is below.
I live in the UK and am eternally grateful for the care I have received from the NHS – despite how long my endometriosis took to be diagnosed (my eight years is sadly the average for most women around the world). I believe that not having to worry about healthcare costs, whether or not I can see a doctor or insurance costs has taken a weight off an already difficult illness.
Current chronic pain conditions:
- Diagnosed with stage 2 endometriosis in 2010
- Diagnosed with Joint Hypermobility Syndrome (JHS) in 2015
- Diagnosed with fibromyalgia in 2017.
Surgery and drugs:
- Three laparoscopies (diagnostic and two excisions respectively)
- I take Norimin daily (no breaks)
- I have a Mirena implant
- I take a low dosage of nortriptyline every day
- No periods since 2010
Pain self management
- I practice pain self management techniques every day
- I do yoga for pain relief every day
- I have a short walk every day
- I cycle everywhere on an electric/regular bike
- I’m vegan (for the environment and compassion – it has also helped with pain)
- Occasionally use a TENS machine (Quell pain relief)
- I completed the Expert Patient Programme in 2013
- I completed my local pain management course in 2017
- I use airport special assistance when I travel abroad
- I am studying Japanese (I can read, write and speak a decent amount of beginner Japanese)
- I have kept a daily pain diary since 2010.
Memberships & employment
- I work full-time in digital user experience (UX)
- Member of Endometriosis UK and attend my local support group
- Member of Pain Concern.
If there’s something else you’d like to know or want to then do get in touch with me in the comments.
Thanks for reading, and I hope you’re as well as you can be.