‘It felt like razor blades in my uterus. ‘I NEED pain medication!’ I thought I was going to throw up.’: Nonverbal woman with cerebral palsy shares journey with endometriosis

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“My name is Sevinc MacCue. I am 30 years old, and I am nonverbal. I use a communication device, called eye gaze. I have cerebral palsy. and I just got diagnosed with Stage Three of endometriosis in March. I live in Sydney with my fiancee and my family, but we want to move out soon.

I think it is important to realize someone’s endometriosis journey never stops: as I am writing this, I am experiencing a flare-up. Maybe having a flare-up will help me write this better.

Before I go into my endometriosis journey, I will tell you a bit about living with cerebral palsy before I got diagnosed with Endometriosis. I did not really get affected by the fact that I have cerebral palsy. I have a great job, a wonderful social life, and I am about to get married to the love of my life. I go traveling. So, my actual disability does not affect me at all.

A woman with cerebral palsy and her friend at the airport
Courtesy of Sevinc MacCue

However, when I started having endometriosis symptoms early in 2020, unfortunately, everything has changed a lot more than what I would like. Even though I had symptoms of endometriosis every time I had my menstrual cycle, I thought it was only normal menstrual cycle pain until February 2020.

In February last year, I went to my old day program, and I woke up with my menstrual cycle that morning, but I went to work, because I thought it would be fine. I went to the day program, and I suddenly felt this awful serve pain. I said, ‘I don’t know what is happening right now, this is not normal period pain’ to the person who was supporting me that day. I do not remember who was supporting me, but I remember she said, ‘Do you want to go home?’ I could not go home because at the time, my girlfriend, now fiancee, was living in Gosford, and my mother was at work, so I had to stay there for the day.

A woman with cerebral palsy and her girlfriend sit next to each other
Courtesy of Sevinc MacCue

As the day continued, the pain got even worse, so bad it felt like razor blades in my uterus, and I felt like I was going to throw up. ‘I NEED pain medication!’ I kept saying, but unfortunately, they did not have any. I guess I just thought it was just a bad period, I did not think I had a chronic illness at all. I thought it would go away after I had pain medication at home.

It was home time. When I came home, my mum gave me pain medication. It just touched the pain a little bit. A few months later, it was razor blades in my uterus all the time. So, my fiancee called my GP, after one time I had an endometriosis attack in bed the previous evening. She felt scared because she did not know what was happening. We didn’t know I was going to have go into surgery. I was worried I had something life-threatening.  My GP said I needed to go into her practice.

A woman with endometriosis in pain from a flare-up
Courtesy of Sevinc MacCue

I went to the appointment, and I told her, ‘I think I may have endometriosis.’ After reading the symptoms on Google, I had been shocked to discover the symptoms in fact matched my symptoms. She requested to have an ultrasound on my abdomen. I had the ultrasound, and it showed I had a cyst on my right ovary. That could have been cancer or an endometrioma cyst. I was really scared of being told I had cancer, but luckily it was not that. It was endometrioma cyst.

I had found a gynecologist to whom I requested my GP to refer me. She did. And then I got chronically diagnosed with endometriosis, and I needed surgery as soon as possible. I was uncertain about what it could be. Endometriosis or something like endometriosis. In the meantime of waiting for a Lap, I was put on opioids, which just made me feel so sick.

I stopped working, stopped going out, and stopped talking to anyone. I was sad I could not do anything. Not going anywhere for almost three months, except for an occasional shopping visit to buy medication, unfortunately, did make me feel so pointless in life.

I was in the hospital a lot. The hospital visits were different each time. One time it was good, and the doctor listened to me. However, the next time was bad, and I ended up deciding to discharge myself two hours later. The nurse left on the pressure cuff for ten minutes, and the doctor would not give me strong pain medication.

During this time, I could not do my job. I could not go out somewhere, I could not train for the goal to walk down the aisle. I could not eat anything or drink. I could not talk to anyone. I could not think properly. I was upset about not being able to do anything. I felt so pointless. I felt guilty I could not work.

A woman with endometriosis receiving treatment
Courtesy of Sevinc MacCue

The main people I have received support from are my fiancee, my support workers, and my cousin, who unfortunately also has endometriosis. They have all helped me so much, both mentally and physically. Living with endometriosis is incredibly challenging because you can feel fine one minute, and then the next minute, you are very sick.

On the 18th of March 2021, I had an excision surgery, where my gynecologist removed the endometriosis and confirmed I have stage three of endometriosis. Having an endometriosis surgery was the most tiring surgery I have had. I never felt so tired after surgery as I did after having that surgery. I slept for 8 hours. The nurse was keeping on checking on me because she was concerned with the fact I was not waking up.

I finally woke up and had yogurt and a cheese sandwich. I stayed in hospital overnight, because I had a catheter in, and I was in a lot of pain. The next morning, I started my post-surgery recovery from home.  My recovery was a little bit longer than others, but that was because of my cerebral palsy. When I kept on having spasms because of my CP, it hurt a lot more. After my surgery, I was happy I had gotten it done.

A woman with endometriosis lies on a pink pillow in a hospital bed
Courtesy of Sevinc MacCue

When I had my surgery, I was really relieved I now knew the answer to this pain.

So, at this present day, my endometriosis journey continues. The surgery unfortunately has not helped as much as I would have liked it to, but I have now been prescribed medical cannabis for the pain and nausea.

I am not as well as I was before I had constant pain every day, and I cannot work like I used to be able to work. However, I can live a life with the pain by taking medical cannabis. I can still work, just not how I used to be able to work. I can only work a day and then I will have to have a rest day at home.

A woman with cerebral palsy communicates using an eye gaze device
Courtesy of Sevinc MacCue

Living with endometriosis certainly does influence my mental health, but I think living with a disability also helps me to stay positive about my endometriosis illness. I do not let my disability affect my life, so I try not to let my chronic illness affect me. However, cerebral palsy does not give me pain and nausea along with numerous other symptoms.

A woman with cerebral palsy and her partner go for a walk
Courtesy of Sevinc MacCue

If you want to know more about my endometriosis journey, please feel free to contact me on my several social media accounts. Remember, even if you have a disability or a chronic illness, you can do anything you dream of doing.”

A woman with cerebral palsy and endometriosis wearing sunglasses
Courtesy of Sevinc MacCue

This story was submitted to Love What Matters by Sevinc MacCue from Sydney, Australia. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories from endometriosis warriors:

‘My doctor said, ‘It’s just part of being a woman. You have a lower pain tolerance.’ I was nicknamed ‘drama queen.’: Young woman diagnosed with endometriosis after 7 years of pain

‘We usually tell women at this stage to complete their families.’ I was only 17. That wasn’t an option. I had no idea how unlucky I’d be.’: Woman battles stage 4 endometriosis, 2 miscarriages, and hysterectomy

‘You need to isolate immediately.’ The chances of survival for me are extremely low.’ : Woman with asthma, stage 4 endometriosis says, ‘I’ve been fighting my whole life, I don’t plan on stopping now’

‘I want to live in my parents’ basement with 13 kids and no husband,’ said 3-year-old me. One part is true. Babies, and lots of ‘em!’: Woman shares emotional battle with Endometriosis, knows she’ll someday ‘be a mama’

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