When you are trying to get a diagnosis for endometriosis, you spend every second wondering if it is all in your head and is the pain even real. You sometimes have days where the pain is really minimal and you think to yourself, “well it can’t be that bad right?” Right?
But before you can finish that thought you are reminded by the pain that it is actually that bad.
You spend days in Endo pages connecting with other women who will listen and be more of a support than some doctors. They believe your symptoms and go through it with you, while never doubting your story.
Medical professionals you need to understand that your words of doubt make us questions our own reality and being, know that your negative opinions haunt us playing over and over in our minds like a movie reel. To you the words you say are forgotten when we leave the room but know this, to us your words go much further than the doctor’s office, we carry them on our shoulders daily.
We wear your negative words like scars.
When we are lying awake late at night, it’s your words running through our minds, wondering why we are in so much pain and if it is all in our heads why can’t we just meditate it away? Women should never have to leave a doctor’s office feeling invalidated or disbelieved, you are being paid to help people not judge them based on your own biased opinion of women and chronic pelvic pain.
Below are just some of the voices of endometriosis, these words have stuck with these women, they have hurt these women and made them questions their own reality. Please know that if we come to you in pain it’s because we want help, not because we have nothing better to do with our time. Listen to our symptoms and if you don’t know what is going on, put your pride aside and refer us to someone who can help. Saying it’s all in our head to save your pride costs us our self-value.
The voices of endo:
- “The last Laparoscopy was squeaky clean! We don’t need to do another one.” and ”Go back to your GP.“ –Ellie Jade
- “Stronger medication isn’t needed, it’s just period pain. Panadol, Nurofen and a heat pack is plenty to help you feel better” – Rachel Townsend
- “It’s just bad period pain, you need to go home.” – Amy Lynn
- “Don’t go looking for something you don’t want to have.” – Laura Sidari
- “You know getting pregnant can help.” – Emily Shea
- “You don’t have endometriosis, you think the pain is there but you’re just remembering it, not feeling it.” –Talia Admiraal
- “I think you should get admitted to the psych ward; it’s in your head.” – Sevgi Janes
- “There’s no chance you have endo, your symptoms aren’t severe enough for something rare like that.” –Anna Reed
- “You just had sympathy pain since your mother also had endo.” – Rahni Gray
- “You’ve had one child so you’ll be able to have another. Just keep trying heat packs and alternate Nurofen and Panadol for the pain”. – Sammi Woodberry
- “I was told I’d probably never have kids and that I would have a better chance now right after my first surgery.” – Sharna Olsson
- “I had a GP tell me that my anxiety and depression was causing me to catastrophize about my health and the random and sharp pains in my stomach were essentially caused by anxiety (in my head).” – Sarah Pinkie
- “Just lose some weight and you’ll be fine” – Melissa Austin
- “Just take some Nerofen and Panadol and I’ll be fine.” – Megan Emily McCamish
- “It’s just ovulation pain and periods aren’t meant to be fun.” – Megan Elise
- “It’s all just in your head & your family are making you believe you are experiencing pain.” – Taylor Dillon
- “Varicose veins wouldn’t be causing your pain. I think you need a psychologist.” – Kelli Howett
- “So when did you supposedly get diagnosed with endometriosis?” – Becca Ellison
- “My current GP turned around and said to me that my Endo wasn’t that bad because it was only a spot on the pelvic wall.” – Tamika Leigh
- “You don’t have an extremely bad cause of endo so it shouldn’t be that bad.” – Lizzie Oxley
- “You have adenomyosis. It can make it harder to conceive but you’ll be fine you can still have kids. The only cure is a hysterectomy and at 25 with no kids no surgeon will touch you.” Candice Scifleet
- “Your daily pain and nausea is your normal so just deal with it” – Sarah Darling
- “You are the most consistent vomiter supposedly sober patient I have ever had. . . Are you sure you aren’t drunk?” – Elmo Bear
- “You and every other woman that walks in here with abdominal pain think it’s serious. I think you all want sympathy and drugs.” – Sarah Ingram
- “While having a trans vaginal ultrasound after complaining about painful sex, the gyno continued to stab me with the probe even though I was crying out in pain. He kept saying “What, pain like this?” as he stabbed me. I felt incredibly violated.” – Leanne Waite
- “Chronic pain scares the shit out of doctors and most will wipe their hands, give you the basics and send you home, because Chronic pain is the hardest thing in medicine, we don’t always know what to do and it is scary, policies and procedures that are in place, also control what we can do and I’m so sorry that it is this way” – Donna Smith
- “I don’t have a magic pill that will stop the endometriosis.” or “Are you just here expecting us to give you strong painkillers?” – Karina Flanagan
- “You are a mess in there. I never want to operate on you again, it was horrid in there, like a nightmare. I couldn’t remove your cervix, it is stuck.” – Kathrina Southwell
- “Watches doctor google ‘endometrioma’ in front of me because it was mentioned as a possible thing from an ultrasound then explains to me what he read” – Tegan Sabine
- “Just drink a few glasses of wine before you have intercourse.” – Simonne Hollis
- “Meeting a man and falling pregnant will fix it.” – Alexandra Feldgen
- “If you weren’t fat, you wouldn’t have endo!” – Britney Coleman
- “It’s only been a year since your last endo excision. I bet we won’t find anything.! I’m an endometriosis specialist. There is no such thing as endo bloat or endo belly. It’s called IBS my dear.” – Chilli Chicky
- “Your tummy is only bloating because you’re not on a diet” – Tegan Grindley
- “It sounds like you have painful periods, but I think you might just be a bit sensitive.” – Grace Anne
- “You shouldn’t be using opiates at all. Paracetamol and an anti-inflammatory is enough for your pain” – Katie Flash
- “I doubt you have Endometriosis, you’re only 20.” – Kirra Jayde Beattie
- “You couldn’t be a prostitute even if you wanted to by the way you are describing your pain” – Stasi Gianekakis
Medical professionals: Period pain is not normal; it’s just common. These are just some of the voices of the women who are suffering because of words spoken by you. We all deserve to be heard and validated, we know our bodies better than you so trust us when we say something is not right, you might actually learn something from us.
Endometriosis is honestly awful but from it we are lucky enough to be a part of the most beautiful group of women who are stronger than they ever thought they could be.
My name is Krystle (shehaswhatofficial).
If you had told me one day that I would wake up in chronic pain that turned out to be an incurable illness that would impact almost every part of my life, I would have thought you were crazy. This is frustratingly my reality. I have endometriosis, I am 1 in 10. I also have adenomyosis who is endo’s bff. They are kind of like Cinderella’s evil stepsisters and their job is to make my life that much harder. What does this all mean for me?
It means lots of surgical procedures, it means that heavy pain relief becomes a part of your basic diet, it means that sex isn’t sex anymore, it means bleeding through every nice pair of underwear you own, it means managing your mental health daily to try and get through the pain.
Having an Endometriosis diagnosis means I have fought to be heard, it took 31 specialists, the amount of an average house deposit and endless breakdowns to finally be heard and have my first diagnostic surgery.
Endo has affected a lot of my life and taken so much but it has also taught me that we have to keep being our biggest advocate to be heard.
On average it takes 7-10 years to get a diagnosis of endometriosis and these are the years that I cannot get back, I was seeking help for my “period pain” from the age of 11 and got a diagnosis at the age of 23. We should never be silenced about our symptoms because we have to be the voice to make the changes for future women.