The illness causes sufferers to experience painful or heavy periods, pain during sex and fertility issues - all of which are sensitive subjects.
But in an essay for Glamour, Lena Dunham revealed she is often bombarded by questions about personal issues - particularly her fertility - from those who don’t realise how serious endometriosis is.
“I’ve had virtual strangers asking whether I’m fertile, if I plan to freeze my eggs, and how I feel about adoption,” she said.
“I talk about my illness to normalise it for other women, not to invite dialogue about every aspect of my private life, including my desires around motherhood.”
In light of her comments, we asked seven other women with endometriosis what they wish people would stop saying to them.
1. “It’s a normal part of being a woman.”
Kylie Abreu, 31, diagnosed with endometriosis in March 2017, aged 30.
“I was often hospitalised because I would pass out from the pain of endometriosis and almost every time I was greeted with an instant dismissal to my pain. I was told that it was ‘a normal part of being a woman’ and that I just had a low pain tolerance.
“It enraged me. I couldn’t believe that people thought passing out and vomiting from ‘period pain’ was normal. I felt like I was instantly categorised as an overdramatic weak woman who was looking for attention.
“This attitude can make you feel alone and very self-conscious. Whenever I would have an episode I felt embarrassed and ashamed as if it was my fault. When I was finally taken seriously, doctors found a cyst on my ovary that was rapidly growing and almost wreaked havoc on my digestive system and fertility. It is important to understand that this is more than just period pain.”
2. “Try a hot water bottle.”
Lex Talonted, 33, diagnosed with endometriosis in 2015, aged 31.
“The main thing that frustrates me is the unsolicited advice that people offer. I know that it’s typically coming from a nice place and they just want to help, but it often shows how ignorant people are about the condition.
“For example, if I tell someone that I had to miss work because I couldn’t get out of bed, and they reply with ‘you should try a hot water bottle, it always really helps me at my time of the month’.
“That is not only unhelpful but it also really trivialises the condition. I think endometriosis is very misunderstood, even among other women, so it can be hard to make people grasp its severity and just how much it disrupts your life.”
3. “You’re being a drama queen.”
Jane Austin, 52, diagnosed with endometriosis in 1989, aged 24.
“The things I hated the most were the uninformed, and subsequently, loaded comments, which undermined me. Unfortunately these came from both sexes:
‘you’re imagining it’, ‘you and your gynae problems’, ‘such a drama queen’.
“When I was diagnosed the female doctor said that my fertility was affected and that I shouldn’t wait too long to have children and that I shouldn’t have focussed on my career. I was a 24 year-old editorial assistant living in a housing association, I hardly think I’d spent my most fertile years climbing the greasy corporate pole, ignoring my reproductive purpose. She also said that she’d decided not to have children and that she was fine with it. Fucking great. So the other thing I hated was the presumption.
“Every few years I would ask my doctors if there was new medication and they would ask why I was asking. I would say that I was in a different stage in my life and perhaps another form of treatment might be more suitable or perhaps there had been some medical innovation. Nothing.
“After I’d been on Provera for 27 years I asked again if there was another drug and apparently there was. Wonderful, I asked how it was different or better? ‘It’s cheaper,’ came the reply.”
4. “When are you going to have children?”
Jess Austin, 23, diagnosed with endometriosis October 2017, aged 23.
“I was only recently diagnosed, so haven’t been on the receiving end of infuriating comments yet, but I can already foresee them. Every woman knows that they will inevitably be asked when they plan on having kids with their partner, I mean, I’ve already been asked multiple times and I’m only 23.
“I have always wanted kids (not yet, but someday), but I now know that it won’t be a simple route. I will have to be weaned off my pill, to have it replaced by another pill for a year, and will then be monitored.
“Fortunately, I was diagnosed early enough that my fertility has not been impacted but I know that when that question arises again, it won’t be as simple as laughing it off. The question will hurt.”
5. “Don’t tell your employer.”
Sofie Hartley, 27, diagnosed with endometriosis in 2013, aged 23.
“It’s incredibly important to discuss your endometriosis with your employer because there are going to be days where you’re going to need to see a doctor, a consultant, a specialist, you may need surgery, or you’re generally feeling unwell and you’re not able to make it in work. Your employer will, most likely, be more sympathetic.
“But other than that, you’re starting a conversation. Your employer, be them male or female, may not understand or know what endometriosis is, but isn’t that what bringing awareness is all about, starting a conversation?
“Endometriosis sufferers are now protected under the equality act, so there is no reason why you shouldn’t tell your employer about your endometriosis, nor should you feel like you should stay silent about a disease that is as common as diabetes in the UK. You have a right to work, but more importantly, you have a right to work without prejudice.”
6. “You’re a flakey friend.”
Holly Leppard, 34, diagnosed with endometriosis in 2015, aged 32.
“Please don’t joke about me being a ‘sick note’. I understand I may not be as reliable as most people but I’d rather you not make light of my situation.
“Around 90% of my life is spent trying to cope with the sensation that my uterus is trying to break out of my body; sometimes by brutally stabbing its way out or sometimes by twisting and turning with a slowly grinding blade. I’m sorry that it annoys you when I cancel last minute or suggest another plan for our day together. It annoys me too.
“Believe me when I say, I’d prefer to be enjoying a day of walking in the fresh air, eating lunch and (probably) drinking wine with you. I’ll just be over here, crying in bed, feeling faint and nauseous from the severe pain.
“I know it’s hard to understand when someone suffers from an invisible illness, particularly when I may have been seemingly fine last week when I was out with some old friends. I guarantee I wasn’t feeling great.”
Elizabeth Sparkes, 36, diagnosed with endometriosis in 2009, aged 28.
“Please stop saying...nothing. Most people close to me who understand are very empathic, but then there are people who don’t realise how awful it is, or what it is. We need to raise awareness and explain how debilitating this is emotionally and physically.
“Having an illness that is hidden and not widely understood has left me feeling embarrassed in the past and I have often wanted to hide it from people, especially colleagues. Having time off work for operations is so hard as I wonder whether people really get it, how bad it can be. I feel terribly guilty at times. A part of this guilt is emphasised by the illness being hidden.
“If we could educate about it more widely I think it may help those diagnosed to feel validated and understood. I will be having a hysterectomy soon, it’s the only option now due to damage, but the psychological part is the hardest to make peace with.”