Endometriosis is a condition in which cells similar to the lining of the uterus are present in places of the body where it doesn’t belong, often causing debilitating pain.
Despite 1.5 million people in the UK living with the condition, a shocking 54% of people don't know what endometriosis is, even though it's as prevalent as asthma and diabetes.
I have endometriosis and it took eight years for me to get diagnosed, which sounds like a long time, but that's actually the average amount of time it takes to get a diagnosis.
So, we asked readers with endometriosis to share some of the things they wished other people knew about living with the condition. Here's what they said:
Editor's note: these submissions are based on individual expreriences, and are not from medical professionals; please speak to your doctor if you're concerned about your health. You can find out more about endometriosis here.
"Not every month is a bad endo month."
"Please don’t discount our severe symptoms just because we have a few good days."
"Just because on the outside someone looks fine, it doesn't mean they are!"
"Looking 'fine' in front of others may mean that when they're alone, they have no energy left to do anything else! Also, stop telling people they're brave going through it – it comes from a good place but, when you are hiding how bad you feel it pressures you to make sure that you look okay!"
"One of the symptoms can be GI distress."
"There may be a day where all I can stomach is toast or soup. Sometimes certain foods don't agree with me, and sometimes I need the bathroom for a solid hour. It's painful and humiliating. Please don't say anything or make faces, I'm already feeling those things myself."
"Going to the bathroom is a chore."
"My scar tissue formed around my bowels and bladder, so I go to the bathroom a little more frequently, and spend a little longer in there than others might."
"Pregnancy does NOT cure it!"
"I had a gynaecologist and three older women try telling me it would. Pregnancy did nothing for it, periods were just as hellish after pregnancy. Oh, it can flare during pregnancy 😭."
"I want people to know is that even though it is ‘very common’, it doesn’t minimise the issue and everyone has a different experience with endo."
"I don’t like to speak about it at all or even tell people I have it, because when I do quite often ‘somebody knows somebody who had the same thing and they did this to help or that to help and lots of people have it.’ Which kind of makes me feel embarrassed to be upset about my personal experience with it.
Even though it is very common, it doesn’t stop it severely impacting the life of each individual with it, because even though it’s one in 10, being that one in your group of 10 friends having kids and having a normal menstrual life can feel very isolated."
"These are the incisions after my excision:"
"I wish people would just believe us, especially doctors."
"After six years of going to the doctor, one told me I need to understand that periods are just painful, it's normal. Thanks, doc, but I've been having periods for almost 20 years so I know how painful they are supposed to be and incapacitating me three days every 21 days is not normal. Oh and it got worse after I had a baby, so stop saying that's a cure."
"Don’t ignore the pain, and fight for a doctor who will listen!"
"I wasn’t diagnosed until I became so anaemic due to severe bleeding that I could barely breathe or stand up (and that was with iron supplements!). Even when I don’t actually have my period I have abdominal pain, and my energy is just gone. I wouldn’t wish this on my worst enemy."
"I wish people knew that it's about so much more than fertility."
"Reassuring people that it's okay, they'll still be able to have kids, is really hurtful to those who already know they can't, and infuriating to those of us who don't want them. Endo is physically and emotionally painful, please respect and listen to the people who have it rather than prioritising our baby-making abilities."
"My pain tolerance is really high, so when I say I'm in daily pain and it's affecting my entire life I'm being serious."
"I don't want to have to take seven tablets in the morning just to be able to get dressed. I want to be a good mum and wife, I want to work, I don't want endometriosis to be the only thing I talk about, but it has such an impact on my life I can't think of much else."
"Stop telling me you know someone who was 'cured'."
"I have to survive in a body that is trying to destroy me. I will have days where we are moody, irritable and need to be alone, this is not a reflection on you. Some days I’m just devastated by this condtion.
Stop with the unsolicited medical advice, we know a lot of the time you mean well but trust me, I’ve tried it or researched it. It's also not my job to educate you on the condition 🎗💕"
"I wish people understood how draining it is on your overall physical and emotional health."
"About 50% of my days are spent with an overall dull pain all over my abdomen and feeling like I'm coming down with a stomach bug because I have small spots of endometrial tissue spread over my intestines. People think it's 'just bad cramps' but don't understand how severely endo can impact your general well-being on a daily basis."
"Being young does not mean you can't have endometriosis or 'don't have it bad.'"
"I had a five-hour surgery to remove my endometriosis and the doctor said that I had a case of endo that he usually only sees in people twice my age, with endo covering every organ in my pelvis. I'm 24. It also often goes hand in hand with pelvic floor dysfunction, which can cause bowel and bladder problems. Regular OBGYNs are not always trained to deal with the complexity of this disease, so it's not easy to get the help that actually HELPS. We need support and understanding more than anything. This is a chronic disease that causes chronic pain and chronic fatigue at the least."
"I wish endometriosis and all the symptoms that go along with it were legitimised as a reason to stay home sick from work."
"There’s nothing worse than the judgy looks I get from co-workers when I’m actually honest about why I have to stay home, as if I’m just being dramatic. I feel like if endometriosis was a medical condition men also experienced, it wouldn’t be dismissed and there would be a cure by now."
"If men were affected, I feel like there would most definitely be a cure which would be very cheap. This is what makes me so furious. Endometriosis has been around for centuries and we have made very little progress, whereas male baldness is getting better treatments every year."
"In my case, it makes it very hard to be sexually active."
"Simply being aroused can cause horrible cramping pains, and actually orgasming can make the cramps so much worse. It’s terrible."
"The pain is not normal. Don't let your doctor convince you it is."
"Be prepared to advocate for yourself: push for diagnosis and treatment. You will probably have to do this many times until you get it. The only reason I knew what endo was and how it was affecting my body was that I researched it – I was told I had a condition, and then essentially left to it. There are support groups and forums with people who have been through it and who can help (but avoid those that scaremonger!)
And don't forget to be kind to yourself. Practice self-care and if you need time out, take it."
"It’s a very isolating and lonely condition."
"It’s difficult to fully understand what it’s like to live in constant pain unless you experience it, which can be frustrating for your loved ones. Sometimes it even pushes them away, or they’ll get frustrated with you for always being in pain. Also, it can feel like you’re trapped inside a body that won’t allow you to reach your full potential. There are days when you mentally want to do things, but your body just can’t handle it. It’s like being at war with yourself. All of this is compounded by the fact that there is no effective treatment other than surgery (and even that isn’t a guarantee), let alone a cure."