Endometriosis is a condition that is often misunderstood and misdiagnosed. This is partly because its most common symptom — pain, ranging from moderate to excruciating — can be difficult to quantify or even describe. And in many cases, folks seeking help for their endo pain are simply dismissed or not believed.
In a recent study, 62% of participants with endo said they would put off going to see the doctor about their symptoms, for fear of not being taken seriously. But the pain of endometriosis is very serious: all over the world, people with endometriosis are missing out on job opportunities, life experiences, and struggling with their mental health, all because of this condition.
Yet, if you have endo, you have to be able to communicate how you’re feeling in order to get the support you need — which can be difficult in the middle of a painful flare-up. We asked four endo warriors how they’d describe their endo pain, and for their advice in explaining it to others.
Carla Cressy
Founder and CEO of The Endometriosis Foundation
My endometriosis symptoms were dismissed for over 10 years. I remember feeling like nobody was interested in looking into why my periods were so painful.
I would often throw up from the pain and experience such deep, sharp discomfort that it was difficult for me to sit down. I’d also suffer from severe migraines that would cause me to pass out. It was tough. I remember crawling from the bedroom to the bathroom because I couldn’t physically straighten my body, and would also have a severe stomach ache like I had eaten something that had gone bad.
I know how hard it can be to communicate your pain with those closest to you. Especially if a doctor is telling your family, friends or partner that “It’s just a period and you should get on with it” — which is something I experienced. At one point, doctors mistook my pain for a burst appendix and I had an emergency operation to have it removed. When the lab tests came back saying that my appendix was still intact, and it wasn’t the reason for my pain, I felt a sense of relief because I was able to show those closest to me just how painful endometriosis was.
Carla’s advice
When it comes to communicating with healthcare professionals, my advice is to keep a symptom diary. Sometimes you could be waiting a really long time to be seen and when the day finally comes, it can be a little overwhelming. Having all the information written down from the previous weeks and months can be really helpful.
Pain of any type should never be disregarded. If someone close to you really wants to understand, they’ll listen, but unfortunately, that’s not always the case. This is why I set up The Endometriosis Foundation’s support group because it really helped me to connect with others who just know what I’m going through, so I would recommend joining that if you are struggling too!
Martyna Przybysz
Photographer and founder of The Kind Space
My endo is in my womb lining, on my uterosacral ligaments, my ovaries, and in my stomach wall and bowel, so the pain can come in many forms.
Sometimes it feels like someone is stabbing me up my rectum and vagina with a sharp object. Other times, it feels like I have a bruised perineum area or I have sharp pains when I sit down. Sometimes, it feels as if my womb is about to fall out through my vagina, it feels so heavy and uncomfortable. The other feeling I experience is having an inflated, hard stomach where the pain is so widespread that my ribs actually hurt. That’s all linked to my bowel endo — it can sometimes feel like someone is literally wringing my bowel out like a towel.
My endo pain has been dismissed ever since I started to see gynaecologists with my complaints of excessive bleeding and pain — and that was 16 years ago. At first, it felt comforting to be told by a medical professional that there was nothing wrong with me. But after years of being told that this is just how I am, I began to feel gaslit and hopeless.
Martyna’s advice
You will often feel like you’re repeating yourself when trying to describe what you’re going through, as pain is such an elusive thing — you need to practise patience! You can try using a pain scale: marking it from 1 to 10 or comparing it to other feelings people without endo might be able to understand. But my advice is to always believe what your body is telling you, it knows best and your pain is your pain, and therefore, it is valid.
Rebekah Lloyd
Podcast host and founder of This Independent Life
Pain is incredibly subjective, but for me, endo pain is a mixture of different sensations that can vary depending on the type of flare-up.
There are the intense waves of burning sensations, the more focused sharp pain in some areas that feels like you’re being stabbed, and then there’s the pulling and tugging sensations. These can happen around my ovaries and/or around my whole back and pelvis area, depending on the day. I’m also constantly bloated and suffer from gut pains alongside my pelvic pain — it’s been like this for as long as I can remember.
I think it’s also really important to talk about the psychological pain of endometriosis. Learning to accept that you have a chronic condition, constantly fighting for your right to care and being passed around by different healthcare providers for years can have a devastating impact psychologically — all whilst the disease is progressing physically.
The fact your pain is so often dismissed also impacts your mental wellbeing. Constantly doubting and questioning myself, wondering if this is all in my head, and worrying that I’m being dramatic all became a cycle. It’s something I’m still working through today.
Rebekah’s advice
If I were to try and describe endo pain to someone who has never experienced it, I’d say it’s similar to when your leg cramps up really badly when you’re exercising and the spasms are so intense that you can’t really move or do anything to relieve it. But the pain goes on for hours or even days, rather than minutes.
When talking to healthcare providers, I would always encourage people to document their symptoms and make notes ahead of their medical appointments. It can also sometimes be helpful to point your loved ones towards other people’s experiences, be it through a blog, an article, a podcast, or other resources you find online. It may not work for everyone, but if you’re struggling to communicate what you’re going through, I’ve found that sometimes taking a break and trying this approach can help. It allows people to educate themselves and then come to you to ask you things in their own time, rather than it always being the other way around.
Charlotte Boundy
Figurative artist and founder of Charlotte Boundy Art
I think it’s very hard for someone to fully comprehend what endo pain feels like unless you have experienced it. The pain has changed for me over the last 11 years. When I was younger, it was debilitating to the point where I was having to use a wheelchair. I was in a waiting room once and I’m sure everyone suspected I was in labour from the scream I let out when my pain spiked.
I find now that my pain differs on a daily basis. I experience a lower level of dull but constant vaginal pain, which feels as though I am being scalded up there. If I hold my bladder it worsens, and I’m forever having to scout out where the closest toilet is. Between these sensations, I’ve found myself experiencing sharp abdominal and rectal pains which happen quite sporadically. My pain is still debilitating at times, but I am currently at a period in my life where I have a 50/50 split between bad and better days.
Charlotte’s advice
It can be very difficult to find a way to talk about endo pain to a loved one or healthcare provider. I find it unbelievable that I’ve felt forced to think rationally about how I can persuade a doctor to help me when I’m in pain. When attending appointments, I find going with someone can sometimes be helpful, but sometimes I want my privacy.
I am a stickler for note taking so if I ever notice anything new regarding my symptoms, pain or mood, I write it down and try to prioritise my concerns. That way when I do go to see a healthcare professional, it helps to provide a focus to the appointment. It also helps my loved ones understand what symptoms are impacting me most at the moment and what I might need more support with.
Remember: you’re not alone
If you are struggling with endometriosis pain you are not alone, and your experience is very real! Hopefully, these stories have helped you feel seen and understood, and even given you some language you could use to share your experience of endo pain with others.
At Parla, we not only believe you and understand your pain, but want to help tackle it. Our Period Pain bundle has been created with endo warriors in mind and features the viral Myoovi kit for instant, natural pain relief.
Special Offer: We’re offering 50% off all Natural Pain Relief products until midnight on the 27th of July. Shop now
