screenshot of text that says 50, the percentage that your risk of developing endometriosis can drop if you have orgasms during

Why Cosmopolitan's Sexy Endometriosis Statistic Is Damaging

465
465
4

Women in the US opened their copy of Cosmopolitan magazine this month to find the shocking statistic that they could reduce their chances of getting endometriosis by 50 percent if they orgasm during their periods.

screenshot of cosmopolitan magazine saying women have 50 percent less chance of having endometriosis if they have orgasms during their periods

Wow. Could I have stopped this hellish pain and fatigue by simply orgasming during my period? Could I have stopped the condition that causes me pain every time I have sex by simply orgasming more in the first place?

No. Because it’s nonsense. This is a statistic from a 15-year-old study that was widely rebutted at the time. Here is a great letter from Heather Guidone and Michelle Marvel of The Endometriosis Research Center doing just that.

I know from working as a journalist before I became too unwell to do so, and from being part of various chronic illness advocate communities, that the research that hits the news is not always the research of the highest quality. It is often the research that makes a sexy headline.

This means that “You can stop yourself getting endometriosis by orgasming during your periods” is more likely to be splashed across the front page of a newspaper than “Endometrium found outside the uterus in fetuses.”

And then, unfortunately, the communities are subjected to this research forever as the media digs out these stats whenever they want to find a sexy statistic.

But this isn’t just harmless fun. An estimated one in 10 women have endometriosis. But diagnosis takes a long time. Many of Cosmopolitan’s readers are probably suffering in silence, not knowing that their symptoms are not normal and that they already have endometriosis.

And it’s not just women of reproductive age. Girls as young as 8 have been diagnosed with endometriosis. Should we be telling these girls they should be having more orgasms?

I myself have known that orgasms during my periods are really painful since about the age of 16. It wasn’t the orgasm itself, but any method of getting there caused me a lot of pain.

And I’m not alone. I now know this to be a hallmark symptom of endometriosis, i.e. the very thing that this statistic tells us we should be doing is actually the very thing many of us cannot do.

This is actually very key to one of problems with the assumptions made in this research. The letter from the Endometriosis Research Centre I linked to above asks, “Do painful symptoms of endometriosis occur because women with the disease do not… engage in intercourse during menses, or do those women not… engage in intercourse because they have endometriosis and painful symptoms prevent them from doing so?”

In short, correlation does not equal causation. The reason women who do not orgasm during their periods go on to be diagnosed with endometriosis may well be because they avoid this very activity because it already causes them pain.

Statistics like this not only put out false information to women worried about endometriosis, but it also puts a feeling of blame on those who are diagnosed.

Even if this statistic was true, could I have stopped myself getting endometriosis by orgasming during my time of the month? Let’s break this down. It hurt me at 16 when I tried this for the first time. It no doubt hurt me before this but I didn’t know.

So, while I didn’t find this out for another 13 years, I already had the first symptoms of endometriosis at this age. So we have to go back further if I were to prevent it.

My periods started at age 12. Should I have been orgasming during my periods at such a young age? Is it my fault I didn’t masturbate or have sex when I hadn’t yet figured out what the hell an orgasm was?

No. Even if this statistic was correct, it would not be my fault. But do the girls eagerly buying a “grown-up magazine” and the women with family members with endometriosis or worrying about their ever-growing pain know that?

Do the women writhing in pain every month, or even all the way through the month know that this information is false? Will they feel guilty that their suffering was in some way self-inflicted or, at the very least, could have been prevented?

There is a huge need for informative articles about endometriosis to be published. So many women suffer in silence because they don’t know their suffering is not normal.

So, Cosmopolitan writers and editors, if you are reading this, please apologize and publish a retraction of this statistic. But, if I could ask one more thing of you, please also publish some factual information to help the one in 10 of your readers who have endometriosis identify the symptoms, find out what the disease actually means, and what they can do if think they might have it.

You can find detailed factual-based information on endometriosis on the following websites: Endopaedia and Pacific Endometriosis.

And if you are reading this and are worried you may have endometriosis, or have found out you do but don’t know where to get help, as well as reading the above websites, I’d highly recommend joining Nancy’s Nook Facebook Group, an educational resource for women to find the information to pursue the treatment they need, started by endometriosis advocate Nancy Petersen.

We want to hear your story. Become a Mighty contributor here.

465
465
4

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

How Chronic Pain Made Me Feel Unworthy of Love

440
440
1

After each of my multiple diagnoses with chronic illness, I ran through a gamut of emotions. Sometimes there’s screaming, sometimes tears, and more often than not, there is that ugly thing called denial. One day I’ll binge on Ben & Jerry’s and fill up my Netflix queue with sad movies, and the next I’m going for a hike and laughing with friends. Long story short, when you’re given shitty information about your health, you honestly just aren’t sure how to deal. For me, there are days when the sad just gets old and I try to convince myself it isn’t that bad; that others have it so much worse and at least I’m still me. Even though there’s an imaginary entity that will now wreak havoc on my life, I am in control and it won’t beat me. That’s me on a good day. Not all days are good days.

Although I can be guilty of complaining and feeling sorry for myself, I do often realize I am lucky enough to have what some people don’t while dealing with chronic illness, which is an unbelievable support system. My friends, family, and co-workers are all as understanding, accommodating, sympathetic, and kind as they can be. But when plans fall through for the umpteenth time because I’m too sick to put on a happy face or in too much pain to leave my couch, understanding and sympathy can dissipate. It’s a very lonely feeling when you truly recognize that your friends and family just simply don’t get it, and you can’t totally expect them to.

About a year before I was diagnosed with my second chronic illness I met my number one cheerleader and support system, who is now my fiancee. The beginning of our courtship was light, carefree, full of adventure, and always positive. Most of the time, it it still is. But the difference now is that we have these invisible detractors; these other things that try to get in the way of that positivity that didn’t exist before. We never had to worry about broken plans, postponed adventures, sick days and countless sorry’s and attempted explanations. We didn’t have to bother with researching restaurant menus and keeping a pharmacy’s worth of pills on us at all times to maintain normalcy and have a fun night out with friends. The course of our relationship has moved forward and we are about to say “I do” in front of hundreds of our loved ones, but it hasn’t been without a fight.

Chronic illness and invisible pain has greatly affected my self-confidence. It has (unnecessarily) made me wonder if I am worthy of love, of friendship, of life’s successes. It’s confusing and unfair and even on my better days I’m worrying about my next flare and how I’ll cope (again) with everything that comes along with it. My biggest insecurity for a long time was how this “new me” would fit into a romantic relationship.

When you’re constantly trying to heal yourself it’s easy to forget that the person you’re spending your days with is also being affected. I would have times where I’d be convinced my fiancee would leave me and find someone more fun, but lucky for me, it didn’t take long to realize he wasn’t going anywhere. When you have a significant other who will hold your hair back while you vomit, draw a bath for you when the cramps are debilitating, do pharmacy runs, plug in heating pads, feed you medicine and just hug you while you cry, that’s when you realize how lucky you actually are. That you are bigger than what ails you, and that the right partner can get you through anything. I’m truly blessed with this wonderful person who tries with all his might to understand, but also who apologizes when he just isn’t able to.

We can’t predict the future and what impact the bad days will have on us, but that makes us appreciate the good days even more. Some couples go through normal stresses on a relationship like long work hours, bills, money and outside influences. We deal with all that like any regular couple does, but on top of that there is daily pain, medical finances, missed work and doctors appointments. Disappointing family and friends and having to split our time will always exist. We try remind ourselves and each other every day that if we can get through all that we have, the rest of our lives will be a breeze.

I’ve recently been given my third, and hopefully final, chronic illness diagnosis, but the difference is that I don’t let the tears come anymore. I have actually learned to laugh about it. I tell myself that negativity and bad thoughts are a breeding ground for physical ailments and only manifest bad things. Being lucky in love isn’t a guarantee that insecurity and issues won’t arise and you won’t be tested, but it’s how you choose to pass all those tests that matters. Once you realize your physical limitations don’t define who you are, and that you have so much to give to someone else regardless of those hurdles, you will find that the right type of love comes into your life at exactly the right time. When you have a solid partner to cry through the bad days with and laugh through the good ones with, that next adventure is right around the corner.

We want to hear your story. Become a Mighty contributor here.

440
440
1
TOPICS
JOIN THE CONVERSATION

When 'Jokes' About My Chronic Illness Turned Into Emotional Abuse

553
553
1

Be it mental or physical, anyone with a long-term and incurable illness will likely have received their fair share of skepticism, blame and disdain from people around you. Whether it’s in a romantic or platonic relationship, gas-lighting and emotional manipulation can easily develop when you don’t feel healthy in your body and mind. Sometimes even those closest to you don’t understand, or simply don’t want to, and this can make the isolation that comes with these conditions so much worse.

It took me a long time to realize that I had been close to someone who completely invalidated me and turned every situation into my fault. This would range from, “You’re just having a period,” as I was sweating and crying from pain to “jokes” about how no one would want to be with me now that I was “broken.” From others, there were also the “you’re just lazy” jokes, the constant questioning of what was “actually wrong with me” and the accusations that I was being “hysterical.” And can I just stress that these were comments made which were “jokes.” Totally harmless jokes that made me deeply upset, self-conscious and ultimately void of self-esteem because I started to believe them. I’m the first person to laugh at my own misfortune because it is essentially my coping mechanism, but it was obvious there was something sinister (and often misogynistic) beneath these comments.

These kinds of jokes are emotional abuse. What led those people to constantly undermine me and what I was going through was nothing to do with me. If it’s happened to you, I can promise it’s nothing to do with you either. I was so good at justifying the way they treated me and spoke to me that I simply couldn’t understand how it wasn’t my fault. I was lazy, I was being overly dramatic, I was a burden, I was boring. It was something fundamentally “wrong” with me that someone had just happened to pick up on.

This was such a familiar thought pattern for me then. It wasn’t until I started medication for depression and moved away and allowed myself to reflect on that time that I realized to what extent that person had damaged my confidence, my ability to be vulnerable as well as my judgements on what was normal and what was ill treatment.

Although in that one relationship, there were very blatantly unacceptable comments, there were much more subtle suggestions that the way I felt was my fault, or me being overly dramatic. It came from employers, people I dated, acquaintances. They were little things that would chip away at my already eroded self-worth, like being passive aggressive when I called in sick, or raised eyebrows when I attempted to talk about how what was going on physically was affecting me mentally.

I had no boundaries at this point in my life. I thought relationships were built on endless empathy, compromise and struggle. I would have all the time, patience and kindness in the world for the other person and none whatsoever for myself. I would tell myself they didn’t realize they were upsetting me, they were only joking and would torture myself over how much of an inconvenience I must be.

Long-term illnesses will deplete your self-worth if you’re not very careful with yourself. There’s a reason that I constantly bang on about self-care. I didn’t know how to be careful then and I don’t know now, but I am much better because I actively choose sensitive and positive people to surround myself with. You do not have to put up with people’s comments and opinions about something that only you truly understand. Especially in a romantic relationship because I know the guilt can become overwhelming when it comes to the horrific combo of depression and endometriosis. I definitely don’t have all the answers, but when I feel myself slipping into a potentially unhealthy situation with someone I ask myself if I would treat them the way they’ve treated me. If it’s a no, it’s over. If they have upset you and don’t want to take responsibility for that, it’s not OK. If they don’t apologize, it’s not OK. If they endlessly repeat the same negative behavior with the promise of changing, run a mile. Setting your own boundaries whilst being totally honest with yourself is the best thing you can do.

Through a change in my life plan, moving city and spending a long time trying to understand where my feelings of complete apathy towards my own mental and physical health came from, I realized there was nothing wrong with me. Most importantly, I realized that I was not to blame for anything I’d experienced. Even doctors can be less than helpful, particularly when it comes to endometriosis. From the consultant who asked me “why I hadn’t made more of a fuss” after surgery, to the doctor who told me that pregnancy was a cure, sometimes you have to call people out on their blatant disregard for your condition. It’s hard, and luckily for me, I have caring and outspoken parents who were happy to call out these people and tell them that it’s just not good enough.

I write this knowing for a fact that every person who reads it and has been through a similar experience will know what I’m talking about. We live in an extremely ableist world that will relentlessly make you feel guilty for what you’re not capable of doing. We also live in a world that loves to deny women’s pain and invalidate their emotions. Remember that you deserve compassion, sensitivity and understanding, and although it is a never ending battle, you have to know that there are people out there who want to give it to you. I love when people message me their stories and the feeling of solidarity I get from speaking to people who are open and kind about their experiences. Ending on a seriously cheesy note: human connection and shared experiences are infinitely healing.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: supershabashnyi

553
553
1
TOPICS
JOIN THE CONVERSATION

5 Things You Can Do to Support a Loved One With Endometriosis

34
34
0

Endometriosis is a challenging disease. Not only is it poorly understood in the medical arena, but most people in general have never even heard of it. Yet it affects one in 10 women worldwide and can take up to 10 years or longer to be properly diagnosed. Symptoms can be debilitating, and women may have to endure multiple surgeries to find relief. The gold standard and best treatment available, surgical excision, is challenging for many women to have access to, due to insurance issues, geography and the sheer lack of skilled and experienced surgeons who are able to perform this meticulous surgery. So what can you do if you have a loved one who is diagnosed with this life-altering disease?

1. Do your research. Endometriosis is a difficult disease to understand. There is a plethora of misinformation out there that is being repeated by women who heard it pandered from their doctors, who are still living in the dark ages of the erroneous information they were taught in medical school. We know a lot more about endometriosis than we used to, but the misinformation is still rampant. You can help by educating yourself about the true facts of the disease. Some of the best, most accurate websites are listed below. I have included my own endo-related blog page, Yellow for Endometriosis, as well for concise information and resources.

 

2. Understand her needs. This is a big one that can be divided into several sub-categories.

  • Understand her need for relief. The primary symptom of endometriosis is severe pelvic pain. It is a disease characterized by pain. It is a disease of pain. Get the picture? In many cases, this is a type of pain that can’t be “fought through.” A woman may be affected only during her period or all the time. Pain may be addressed in many different ways, such as heating pads, hot water bottles, hot baths, yoga or over-the-counter pain relievers. But it may come to the point that your loved one needs prescription pain medications. And that’s OK. She is not an addict. She is not selling. She just wants relief, to be a functioning member of society. It may be the only thing that can tie her over until she is able to have proper treatment with surgery.
  • Understand her reluctance to be intimate. If your partner is the one with endometriosis, this is an important one. Another key symptom of endometriosis is dyspareunia, or painful intercourse. This is due to where the endometriosis lesions are located in her body; she may describe deep penetration as feeling like she’s being punched or hit inside. It may be that intercourse is simply far too painful to engage in, so please respect her wishes if she puts the brakes on a romp in the bedroom.
  • Understand her abilities. Since endometriosis can sometimes progress fast and furious, she may go from seemingly all right to bedridden practically overnight. She may need help with daily tasks, such as cooking, cleaning or doing laundry. Never, ever shame her for being “lazy.” Do you honestly think she’d rather be in bed writhing in pain than cooking dinner?

3. Support her decisions. It’s her body, not yours. Only she knows how she feels. If she wants to go with medical (drug) therapy, which will only provide temporary relief and can have permanent side effects, discuss the pros and cons (based on what you’ve learned from your own research, of course!). If she wants surgery (and honestly, she often needs to have surgery to receive an official diagnosis), then be there with her and help her with what she needs while she’s recovering. If she wants a second opinion, support that choice. Many doctors claim to be able to perform excision, but their skills are far less stellar than other surgeons due to experience in the operating room. Do you want a surgeon who’s performed excision 50 times or 2000 times? Excision does not equal excision. You can help her make these decisions by being an active part of her medical care.

4. Understand this is a chronic illness. Technically there is no cure for endometriosis. However, with truly skilled excision, reoccurrence rates are low. But your loved one may have lost something along the way. Depending on how severe her case was, she may have lost several or all of her reproductive organs and now has to deal with the reality of being infertile. Or she may never be truly pain-free due to such things as the formation of scar tissue. Or she may have the evil cousin of endometriosis called adenomyosis, which can be just as painful and debilitating as endometriosis. Just know she’s in this for life and it won’t always be easy, even if her excision surgery goes perfectly and her endometriosis never grows back.

5. Stand with her. Join her if she goes to an event to raise awareness for endometriosis. You will never forget the stories you will hear from other women and their loved ones about their journey, because no two stories are alike. The movement has started to grow over the past several years to the point that those of us affected are demanding better, correct, appropriate care, and people of importance are starting to listen.

Endometriosis is a complex disease with an equally complex forest of medical information (much of which is false) to wander through. It is a hellacious disease to struggle through and those of us affected deserve help, and someday, a cure. You, our loved ones, are on the front lines of those we need to lean on to help us. Will you do that today?

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Getty Images.

34
34
0
TOPICS
, Contributor list
JOIN THE CONVERSATION

How Chronic Illness Is Like a Fire

38
38
0

I am going to spend the next few minutes telling you about what life is like when you are living with a chronic illness. I am going to specifically speak about endometriosis, but I think this can be applied across the board to many chronic illnesses.

Close your eyes. Imagine the most important person in your life, and your very best memory with them. Are you smiling? Do you have butterflies in your stomach? Are you at the beach with your toes in the sand listening to the waves crash in the background, or hiking in the mountains looking at the beautiful scenery as the sun sets? Maybe you are at home watching your significant other and children playing in the backyard, laughing hysterically as they cuddle their brand new puppy? Is there a sparkle in your eye as you reminisce about this one particular memory – this one moment of time?

Keep this vision; pull this person and thought into your mind’s view with everything you have.

Eyes still closed. That special person is physically now standing next to you. That memory you are thinking of that gives you the giggles and is one of the highlights of your life – think of it as a reel of film. Now, set it on fire. The fire will start out small, singeing the very beginning of the reel. But watch closely as it spreads wider and deeper to the edges, and the fire grows fiercer and more violent with each passing second. The room is filling with smoke. It is becoming harder and harder to breathe. You try to stop the spreading to protect that memory and all the meaning it holds. But you can’t – the fire is impenetrable, and there is no escape.

 

The fire has become too large, too fast. The reel of film is disintegrating in front of your very eyes. That memory that was so special is dying from the fire’s suffocating toxins. It is deteriorating along with the film. The fire has almost consumed the entire reel. It is getting closer to your fingers, but you still won’t let go; you hang on by your pinky longing for that one last touch, yet the fire sneaks in, beginning to graze your fingertips. Red and orange colors flicker as ashes of your memory fall to the ground. You have to make a decision: risk everything to save that last remaining inch of your memory before it is lost forever, or risk yourself and the person standing beside you?

Here is the caveat: endometriosis does not allow for either of these outcomes. The ending was never really in our hands to begin with. We just walked the path that had already been paved for us. There was no place to u-turn, and nowhere to take another route. It was a permanent detour that left you stuck in the desert. I have had to watch my old life be captured, burned, turned to ashes and swept out the door, like it was nothing. Then, there is my physical body; it survived, but the person that once occupied it no longer lives. Both that memory and I were lost that day in the fire out in the desert. We reached our final destination.

Chronic illness is like fire. It blazes a trail right through your life and does not stop. The fire takes over your failing insides. The pain seers your skin and organs as the fire rips through every part of your being. Your body contains it, but cannot put it out. Your body now only acts as an accelerate. Any type of prevention only further empowers the blaze. You are now the prized winner of keeping the flame going, and your life is the consequence. The inferno allows you to breathe, but it does not allow you to truly live.

That, ladies and gentleman, is only one small part of what it can be like to live with a chronic illness.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via iplan/a.collectionRF.

38
38
0
TOPICS
JOIN THE CONVERSATION

Halsey Shares Chronic Illness Hack Those With Pelvic Pain Might Recognize

890
890
5

Halsey, a platinum-selling singer who first broke into the music scene as a featured artist on The Chainsmokers’ “Closer,” revealed a technique for dealing with pelvic pain that might look familiar to those with chronic illnesses.

“Making heating pads sexy since 2014,” Halsey wrote alongside a photo of herself holding up her shirt to reveal a heating pad. “As many of you guys know, I live with #endometriosis. It can be really hard. Sometimes I feel like I can barely stand. But on nights like tonight, I slap on a heating pad and take some medicine and go hustle it out.”

Endometriosis is a chronic condition in which tissue similar to the lining of the uterus is found outside the uterus, on parts of the body like the ovaries, fallopian tubes, or even the bladder or bowel. The painful condition affects an estimated 176 million women worldwide and one in 10 women in the U.S. Endometriosis can only be diagnosed through pathology samples taken during surgery and currently, there is no cure.

This isn’t the first time Halsey has spoken out about her endometriosis — in January, she posted a photo of herself in the hospital before surgery, explaining, “OK HONESTLY I’m in total agony right now (and I’m going to be in excruciating pain for a while cause I had quite the cocktail of procedures today). But in my recovery I am thinking of all of you and how you give me the strength and stamina to power through and prosper.”

Anyone who deals with chronic pain likely has their own “hacks” they use to get through the bad pain days, whether it’s heating pads or medication or a favorite tea. We asked our Mighty community what strategies they use when their chronic pain is flaring. Here’s what they told us. Let us know what your “hacks” are in the comments below.

1. “Finding a funny/interesting show on Netflix and binge watch. Maybe even a show I’ve watched before, because knowing the outcome of the show actually makes my anxiety lower.”

2. “When I have to work, I count on peppermint oil in my ice water, music, and moving as much as possible. At home, sleep and Epsom salt baths.”

3. “I remind myself of those I love. I don’t always want to fight for myself but I will always fight for them, even when we fight.”

4. “I have lots of special boutique teas and if I’m having a really rough day I’ll have a pot of yummy tea in my (flare) favorite teacup. It’s only used on bad days.”

5. “Say no to the things you don’t need to do and take a nap instead.”

6. “Music, cannabis, my dog, breaks, stretching, letting myself cry.”

7. “Boiling hot water bottles.”

8. “Heating pad, ice, tight knee highs for my legs, TENS unit, Two Old Goats for my shoulders — an essential oil, Facebook games, the list goes on…”

9. “I tickle my own arm; it’s relaxing and distracting. My husband rubs my feet at night. I rely heavily on my essential oils! Valor, copaiba, frankincense and peppermint are my top picks.”

10. “I play games on my phone! I’m currently playing Emoji Blitz and it helps take my mind off of the pain.”

11. “After I have taken meds I do meditation. There are apps you can look for that are specific guided meditation for pain.”

12. “Music music music… it changes your mood and soothes your soul.”

13. “Video games. The pace is usually pretty fast so you don’t have to focus on one thing for too long and it really stimulates and distracts your mind.”

14. “A really lovely hot bath to soothe my aches and pains, and if it’s a Lush bath bomb then I get made happy by all the smells and colors. We have a really big bath as well so getting in and out isn’t too hard — lots of room for some flailing.”

15. “Some days if I have no other options I will stop where I am at and lie flat on the ground with my knees up — it helps easy my neck, shoulder and jaw pain as well as my hip pain. Frequent light stretching and massaging my tight muscles. Posture checks. Muscle clenching checks.”

890
890
5
TOPICS
,
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.