Living with endo and other invisible disabilities, tips how to speak up

My name is Sevinc MacCue-Mayall and I live with Cerebral Palsy, Endometriosis and Overactive Bladder Syndrome. We aren’t going to get into my actual disability in this article, rather than a few comments on how the other conditions that I have affect me much more than my Cerebral Palsy.

Endometriosis is an often-painful condition in which tissue that is similar to the inner lining of the uterus grows outside the uterus. It often affects the ovaries, fallopian tubes and the tissue lining the pelvis. Rarely, endometriosis growths may be found beyond the area where pelvic organs are located.

It has been a huge journey. It all started in 2020. In October of 2020, I had my menstrual cycle, and the pain was actually so unbearable that I wanted to go to the emergency department. Then the pain of having my period just never went away ever since then. I then started to google my symptoms and Endometriosis came up. At first, I was like “I don’t have that, I don’t have a chronic illness”. I kind of ignored the pain for another month, I was actually at my old day program, and I got my period. OH, MY GOODNESS, I should have let them call an ambulance for me, because the pain was so bad that I couldn’t do anything all day. So, I called my GP the next day. Long and behold, I have the worst-case scenario of Endometriosis that all three gynaecologists that I have seen, seen.

I had my first Laparoscopy in March 2021. It’s where they do keyhole surgery and remove the Endo tissue, if you get diagnosed with it. So, of course I did get diagnosed with it in that surgery. However, that gynaecologist only removed half of my Endo for some reason. I just found this out last year by my current gynaecologist. I was having pain again after two weeks, wonder why?!? I called the gynaecologist at the time, to which he said, “you don’t have Endo, I removed it all”. You have complex Endo, I can’t help you, here are a few numbers of other gynaecologists”. I saw another gynaecologist, who was also a pain specialist for a few months. Same thing happened. “Dr … removed your Endo, you don’t need another surgery, if you just think you aren’t in pain, your pain will disappear”. We are now at the present time of my journey with my Endo.

The current Endo Specialist is amazing, he listens to me, sees me every few months and he has done my last two surgeries, which was a hysterectomy + removal of Endo in 2023, and again at the end of 2023, then I will have it again in February next year. The hysterectomy was done in hopes that my pain would get better or no pain, but unfortunately it has caused more chronic illnesses. I now have Overactive Bladder Syndrome. It causes me to frequently need to go to the bathroom. With me having Cerebral Palsy and not being able to just go to the bathroom, like everyone else can, I have really struggled with getting diagnosed with OAB.

Let’s go through a day of Endo Flare!  I wake up, I can’t move, I feel like I am about to throw up, I pee myself a bit, I can’t talk to anyone, I take about 10 different types of medications, for pain, nausea, heartburn, OAB, etc. I feel like my stomach is going to break, I feel like I am going to pass out. Which I have several times. I have to run to the bathroom. I feel frustrated. I feel like a failure sometimes. Even though I know I am not! I can’t communicate with my eyes properly, I can’t work, I can’t go out. I can’t even sit in my wheelchair sometimes!

Endometriosis is a very awful painful chronic illness, there isn’t much research on it so not even the professionals really know much about it. However, the government has recently started to put funding for research on Endo.

My tips are:

• If you think your period pain isn’t normal, don’t wait until it gets too much.
• Listen to your body.
• Shop around for the best Endo Specialist for you!
• Be kind to yourself. It’s okay if you can’t do anything on a flare.
• Find the best pain relief that works for you.
• Stand up for yourself! Your pain and symptoms matter! Disabled or Abled body!
• Ask for help if you require it. From family and friends. Or even a professional.
• Try to balance your schedule around your cycle! It’s really difficult to work on it. Or go out with friends or family.
• Take pain relief when required. Buy heat packs, the heat really helps the pain!
• Go to the doctor when required. Hopefully they will help you.

Most importantly, look after yourself and rest when you need to!