My endo pain feels like…

IT is estimated that at least one in every 10 women suffer constant, gruelling pain because of endometriosis — a condition in which tissue similar to the lining inside the uterus (the endometrium) is found outside the uterus where it causes a continuous inflammatory reaction that may result in scar tissue.

But for a disease that affects 200 million women worldwide, very little is understood about endometriosis. Why? Because it only affects women, and its main symptom is the kind of pain that women are taught to keep quiet about.

Period pain, pain during and after intercourse, abdominal pain and chronic pelvic pain are feelings that most women have experienced, and have even got used to. As such, endometriosis usually takes years to finally be diagnosed after all other possible causes have been ruled out.

In observance of Endometriosis Awareness Month, All Woman is helping to shatter the notion that pain is a necessary part of a woman’s existence, so that more women will be encouraged to speak up when they are feeling pain, and more health care professionals can empathise and understand. We asked 10 women who have been diagnosed with the condition to tell us exactly what the pain feels like. Here is how they describe it.

1. Dionne Jackson Miller

Journalist and attorney-at-law

The pain was excruciating. It would be in my lower back running down into my buttocks, and at first it was just a couple days before my period, then the pain started to last longer and over-the-counter drugs stopped working. After about eight months, it was 24 hours of unrelenting pain. I was in pain every single minute of the day. I used to go home after work and just lie down on the floor because the cold tile against my back gave me a little ease. I couldn’t sleep through the night because my pain would wake me up. It was horrendous, and it affects everything. It’s hard for you to smile with anybody, it’s hard for you to take pleasure in anything…

2. Davianne Tucker

Marketer, public speaker, content creator

My endo pain feels like knives cutting through my pelvis, with my middle, left and right side throbbing in pain. It feels like intense fatigue, a heavy sack in my abdomen — my womb, ovaries and Fallopian tubes out of place, resting on an aching cervix. It feels like severe lower back pain radiating a numbness down to my toes and it took almost seven years of suffering, of misunderstanding, to reach a diagnosis.

3. Roxene Nickle

Radio producer and presenter

Imagine the worst period pain that you can ever have in your entire life, then quadruple that and it would probably come close to what I go through on a consistent basis. The back pain, the stomach pain, the cramping down the legs… it’s a terrible disease. It also affects your social life, your private life and whether or not you will be able to have children, and it can kill you eventually. I will never have children because I have so much scar tissue. I’ve done two surgeries and the pain is less now, but it never really goes away.

4. Shari-Kay Edwards

Beauty therapist

My endo pain feels like a constant stabbing. Besides the physical pain that I experience, there is also the mental breakdowns that come from being incapacitated by pain. The transition from having pain for one week per month to now having pain every week has been a rollercoaster of emotions for me. For many years, I believed the myth “period pain is normal”. Since diagnosis, my life has taken a complete turn. Despite living with a painful illness, I strive to be better and do better each day. #WarriorNotSufferer

5. Kristen Laing

Public relations coordinator

My endo pain is physical, financial and emotional. Physically, it feels like my insides are being ripped out, like someone has reached their hands inside and is trying to pull out my insides through my belly and through my back. Financially, it’s finding out that I have no more money on my health card for medication, even though I’m on a family plan. Mentally, it’s like nobody understands what I’m going through when I just feel like I’m going to die from the pain, and knowing that there are other women who go through this and it is treated like something normal.

6. Sanya Goffe

Attorney

It feels like my lower back and abdomen are being torn from by body. I was diagnosed with stage four endometriosis in 2014. I recall my doctor saying it was one of the worst cases he had ever encountered. The pain is difficult to manage and attacks in waves, requiring me to take over the counter pain medication for about 20 days out of every month. I have had several surgeries which have helped to reduce the pain for short stretches of time, but it always comes back. It is encouraging that more persons are sharing their experiences and women and young girls are being diagnosed earlier.

7. Sara Stanford

Owner of Bliss Bridal Boutique

My endo pain feels like someone has taken their hand, grabbed on to my uterus and is trying to rip it to shreds. Every month for about five days I feel like I am going through labour with severe cramping and sharp excruciating pain. The pain also varies. Before my diagnosis, every month for about 10 days before my period I had what felt like severe heartburn and chest pain. There is also severe back pain and numbness in my leg every month.

8. Shauna Fuller Clarke

Director – Strategy & Innovation, Kingston Bookshop and Co-Founder & Executive Director – B.A.S.E. Foundation

My endo pain feels like all my insides are being churned together in a meat processor…slowly…which makes me curl up on a bed or on the floor. The pain sometimes makes me throw up. Sometimes I have difficulty breathing. I was first diagnosed with asthma, and it took eight years, a collapsed lung and three surgeries for them to diagnose me with stage four endometriosis.

9. Shari Nehemi

Artist

Mine is posterior so I end up with chronic back pain and issues with mobility in my legs. It can be triggered by anything – sitting, standing, anxiety, change in hormones and of course menses. Pain medication doesn’t help. I have random pelvic pain, I’m more prone to certain illnesses, I’ve had to make major diet adjustments, and it affects my mental health.

10. Ashley McLean

Entrepreneur

My endo pain is so bad that if I wake up in the morning and nothing hurts I would think that I’m dead. The pain feels like my ovaries will pop out at any moment, or like someone is physically twisting or pulling out my colon with scissors. It’s like a ripping, tearing sensation all over my body in slow motion. But it hurts the most mentally. My endo pain isn’t who I am, but it controls so much of what I can and can’t do. Still, I’ll continue to fight and advocate for others.