Tweet which reads "All this tells people is that for women's pain to be legitimate men have to suffer too."

Researcher Studying How Endometriosis Affects Men’s Sex Lives Replies to Outrage

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Last week, a University of Sydney study recruiting participants for research examining how endometriosis — a condition which affects the female reproductive system — influences men’s sex lives sparked outrage among the endometriosis community. Now, Jane Keany, the study’s principal researcher, is responding to backlash.

Keany’s study made headlines last Tuesday after The Guardian published an opinion piece by Imogen Dunlevie, a woman living with endometriosis. Dunlevie argued it’s “enraging” to see a study looking at the effect of endometriosis on men “considering the tiny amount of attention and funding endometriosis gets.”

Sharing her frustration, Dunlevie said:

Studies like this one make it look like the only way endometriosis will get attention is if we highlight how it hurts men. It’s not enough for women to share their countless stories of pain and suffering. How it limits their ability to finish study, work full time or even have sex. It’s not enough to describe the surgeries, and the medications, the invasive procedures that provide little to no relief. The only way we can get people to care is to tell them that men are impacted too.

Others in the community took to social media to voice their concern and aggravation.

In an interview with Australia’s ABC News, Keany said she’s not surprised her proposal upset those living with endometriosis. “I thought this kind of reaction could occur… in fact, in a sense it mimics what happens for men,” Keany said. “Some men have said they are really scared of expressing their own sexual needs because their partner is in such a bad way [so] they just have to set their own needs aside. I’m not saying that’s a bad thing… it’s a giving thing in fact, but let’s see if we can use that to open up the conversation more broadly.”

Keany elaborated, saying endometriosis isn’t just a woman’s problem. “It’s easy to misunderstand this as being a woman’s problem, but I’m saying this is a couple’s problem,” she said, adding, “It even reduces the couple’s ability to have friendly touch as one or both of them are so worried about it leading to intercourse.”

Jane Ussher, a professor of women’s health psychology at Western Sydney University and a researcher unaffiliated with Keany’s study, also responded to the backlash. In a piece published by The Conversation, Ussher noted it is important to study endometriosis from the partner’s perspective as one study showed that “67 percent of women attributed relationship difficulties to endometriosis, and 19 percent said it was a cause of divorce.”

Discussing her own research, Ussher noted that women with vestibulodynia — a condition causing chronic and unexplained vaginal pain — found their male partners were willing to stop having sex, however, the women continued to be intimate because they didn’t want to let their partner down.

“These accounts were from the woman’s perspective,” Ussher said. “I wish we’d talked to the men too. Continuing to have intercourse when it causes the woman severe pain and bleeding is an experience we need to understand.”

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To the Women Living With Endometriosis and Depression

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If you’re a woman who struggles with endometriosis and has also been battling depression for a long time now, I just want to tell you you’re not alone.

Battling depression is exhausting, but it gets worse in that time of the month. Pre-menstrual cramps are something I’m used to. It’s my body’s way of preparing me for the storm that’s about to come.

When I wake up with an excruciating pain in my lower abdomen, I realize the monster has entered into the room. Depression holds me back from getting up and walking to the washroom. My body tells me I might die from the pain, and my depression wishes I would.

 

It is a difficult battle between these two, hence making me cringe and cry with pain – spending pointless time crying over it – rather than getting up to treat myself with medicine and food.

When I manage to finally get up, I end up contemplating life and my existence. Losing myself in thoughts of self-hatred, I take my medicine and hope for sleep to walk into my room and push the monster out.

I spend the first two days entirely in bed. I finally manage to walk on the third day. There are many women out there who are battling with endometriosis; there are some amongst them who are also battling with depression, and this goes out to such strong human beings, who are still fighting and holding on.

I usually keep my medicine and water beside my bed throughout pre-menstrual cramping days. It gives me hope that I have them beside me when the monster comes in the room. And it usually helps, which has supported me in surviving these horrendous four days every month. To all the women who have been dealing with the same trauma, I hope this helps you too!

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Thinkstock photo via Marjot.

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What an Endometriosis Flare-Up Feels Like

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On the 13th of May, I rode in a car with a friend who was in town. I did minor walking that entire day. I walked a bit in a mall this day, as well. All together I only walked 1,700 steps. So about half a mile, according to my tracking app. Though, part of it was done in a wheelchair for the second half of the mall. This entire process, I was only in the mall for about 30 minutes. As the days since that event passes along, my stomach, and my insides get sorer. I have a deep seeded burning feeling that’s growing, which starts out faint at first, but gets more, and more pronounced throughout the coming days. My irritable bowel syndrome (IBS) symptoms have gotten increasingly worse, too.

This is the norm for me. Whenever I choose to do something that requires physical activity, I pay for it a day or so later. I’m in my bed on pain medications, nausea medications, and my heating pad is so high it’s burning my skin. I’m occasionally vomiting from just a little bit of food. This has been my norm for two years now.

This is definitely a flare-up coming about, no doubt about it. It always takes a bit, but then just continues to get stronger and stronger, till it hits a high point and stays there till I finally recover. It hurts to sit down because it puts so much pressure on my pelvic; it’s such a deep seeded pain. I sometimes feel my ovaries must be three times the size they should be, and my cervix and uterus are also inflamed constantly. They hurt so bad some days, I just wish I could get them taken out. Sadly, that doesn’t cure endometriosis. On some days, it feels like my ovaries are stuck to my sides, that they are encompassed by a spider web, and each tear of the web, I feel – making everything hurt just that much more.

On other days, it feels like my navel is being pulled inward. Like its “stuck” on something. Trying to stand straight upwards will be painful because my navel will keep feeling stuck like something is pulling it downwards. Moving a lot will eventually get it unstuck, but not without feeling like someone took a blowtorch to it, and have it burn for days afterward. Everything around that area will hurt too much to even put on a pair of pants, till the inflammation feeling settles down.

When flare-ups begin to happen, I have increased nausea symptoms. The pain also radiates throughout my body. The “ripping” and “tearing” feeling I will sometimes feel in my upper torso, will happen more often. It keeps me from being able to turn my body or move too much, or else I will feel like parts of my flesh inside my body is tearing away inside me. This pain has caused me to pass out on the bathroom floor or it will keep me from eating for six days, vomiting any food I attempt to swallow. Despite this, I have had a doctor once tell me they didn’t think anything was wrong with me, and pretty much did nothing to help me – even though I had just vomited five times in a row, the day before. No test, no exam. Nothing.

People often times think endometriosis is “not that bad,” that it’s “just cramps.” They think that all one needs is an Ibuprofen, and it takes care of the many issues that come along with having endometriosis. Not understanding it affects everyone differently.

Being your own advocate is extremely hard when some doctors won’t even believe you enough to do any sort of test, or least acknowledge the pain you’re in. They often make me feel like I am just not doing enough to be not sick. I finally have a doctor that is helping me, but the battle ahead will be a long one. I intend to continue talking about my experience with this disease, regardless if it makes anyone uncomfortable. More people need to have a voice, and someone to continue to speak about this disease, and how it has such a profound effect on those who struggle with it on a day to day basis.

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Thinkstock Image By: AndreyPopov

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10 Tips for the Days You're in a Lot of Pain

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My name is Ingrid and I have endometriosis and fibromyalgia. It’s a crazy life and sometimes the pain catches up to me – I think that happens to all of my fellow spoonies once in a while (sometimes more often than we’d like to admit). Since there are a ton of these kinds of tips out there, I thought I’d recommend some you might not have tried. So here are some tips I find super useful when all I can do is lie in bed and wait for the pain to stop.

1. Baths, Castor Oil and Epsom Salts

Never underestimate the power of a good bath. I use castor oil with lavender or honey, along with Epsom salts in my baths. The castor oil helps with the inflammation and the Epsom salts work wonders for sore muscles. I try to take a bath twice a week, usually after I come home from work, and it is a lifesaver.

2. Essential Oils

I got an essential oil diffuser for around $20 from Amazon and I use it all the time. Depending on what you need, a different combination of oils like lavender and peppermint can really help with all kinds of things, from relaxation to concentration. You don’t even need a diffuser; just put a couple drops on your pillowcase or in the bath.

3. Yoga

If you’re like me you might be thinking, “I can’t do yoga, it’s too involved.” But if there’s a yoga studio near you, ask them what other options they have. A lot of the time they have more meditative sessions and you can even ask for modifications from your yoga instructor. They are always more than happy to help you find what works for you.

4. Massage Oil

I have a ton of scars from the multitude of surgeries I have been through. Sometimes that scar tissue can grow and start to become uncomfortable. If you get some lotion or massage oil and massage the scar, it can help loosen up the skin and be a little more comfortable.

5. Fruit Snacks

Sometimes (actually, a lot of the time), I need to take pills and can’t get up to get food to take them with. So I always keep a box of fun fruit snacks by my bed. You don’t have to get up and having fruit snacks shaped like minions or other wacky cartoons is a nice pick-me-up.

6. Text Someone

Even if it’s hard to pick up the phone and type, try to text a friend and let them know how you’re feeling. Don’t feel like you’re burdening them or constantly complaining. This is a part of your life and you’re a part of theirs. Even if there’s nothing they can do to help, having someone offer to help you and be with you is enough.

7. Stretch

When I’m in excruciating pain, my muscles tense up everywhere. Taking five minutes to stretch your legs and back can sort of reset your muscles. It’s a common defense mechanism to tense up your body when you’re in pain, and this, for me, tells my body it’s OK to relax now.

8. Keep a Laptop Charger Near Your Bed

I have a separate laptop charger that always stays plugged in by my bed so I don’t have to get up and find the elusive charger I probably left in class or at work. Not having to get up is a blessing, especially when you’re trying to work from home or do homework.

9. Keep a Personalized List Taped to Your Dresser

For me, this was a list of reasons why I shouldn’t feel guilty about needing the medicines I do. I would feel so bad about taking the pills that I would suffer in pain instead. I’ve also kept a list of small things I can now accomplish, like walking up the stairs or not using my wheelchair. Seeing that positive reinforcement daily really makes a difference.

10. Find a Distracting, Mindless Activity That Works for You

When I’m in that much pain, I need something to distract me, whether it’s Netflix, coloring or an app on my phone to divert my attention. I highly recommend Netflix shows like That 70s Show, Parks and Recreation, Archer and any cooking or homemaking shows. No, it won’t make the pain disappear, but it’ll give you something to smile about.

I hope at least some of these were helpful! Chronic illness and chronic pain in general are a roller coaster of a ride and I hope I can help others by sharing some wisdom that has helped keep my roller coaster on track.

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Thinkstock photo via OcusFocus.

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Why I'm Asking the Endometriosis Community to Listen to Lena Dunham

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The next 700 words will explain why I think we need to listen to Lena Dunham, even if we don’t want to.

Lena Dunham is a polarizing figure. Love her or hate her, the choice is yours. Those of us in the trenches of disease and activism have been watching Lena closely for the past year. Ever since she “came out” in February 2016 about having to cancel the “Girls” press tour to rest and recover due to endometriosis, I have glanced her way (and cringed at times) whenever she posted an Instagram photo or video or article about endo. Many of us representing the face of endo have remained silent or measured our responses when it comes to the story she tells and the treatment claims she makes — for example, that “three months of Lupron does the same thing that a surgery can do” and her claim that a recent surgery in which there was “no endometriosis left” had led to her now being “disease-free.”

So it was with a knowing sigh when I read that she needed surgery for deep, invasive endometriosis that was mostly likely never removed in the first place, due to there being precious few expert surgeons truly able to visualize this disease in all its many presentations. I think it was only a matter of time before we would observe these events and her realization unfolding before us. Many of us have been there. We’ve been promised cures, treatments that will work (this time!), the diet that will fix us, the repeat surgeries (oftentimes into the double digits) performed by a non-expert that will relieve our suffering.

A post shared by Lena Dunham (@lenadunham) on

Too many of us know the pain that can make us question whether or not we even want to continue existing. We have stood upon the ledge, dangling our foot over the abyss, tempted by the sweet promise of a cessation to the pain, if only for a fleeting moment. Those who say this disease does not kill haven’t been keeping track of the precious lives we have lost for whom the alluring temptation to end the pain was very, very final.

So I ask you this — listen to her. Learn from her. She is currently and heart-achingly walking the path of so many of us, but on display for the world to see. Reflect upon her story as a cautionary tale. There’s not enough knowledge at this point to proffer a cure. We do know that excision surgery is the closest we can come to a cure at this point — excising the lesions is the key to our being as pain-free as possible, and signs point to Lena’s eventual understanding of excision as the current best treatment.

For those who have followed her slow-motion discovery of the realization that endo is chronic and lifelong and want to utter the dreaded I-told-you-so, I ask that you look upon Lena with empathy and compassion. None of us came to the knowledge that hysterectomy isn’t a cure, pregnancy isn’t a cure, and hormonal treatments aren’t a cure overnight. We had to be taken by the hand by the women who had walked the path before and lived to tell about it. Ferocious activists like Nancy Petersen. Tireless activists like Mary Lou Ballweg. The endless energy of Deborah Bush and her efforts to reach our girls. Kathleen King swimming against the tide and working to end shame and stigma. Lone Hummelshoj bringing knowledge and research to the world to support all these efforts. The whip-smart disruptors like Heather Guidone. They stood up and talked back, and they demanded better treatment. They shared their knowledge with us. They told their story, and offered a path out of darkness and suffering. They carried us along until we could walk on our own, and encouraged us in turn to offer our strength to the women alongside us who, when the pain gets beyond tolerable, are literally dragging themselves along floors to make it to the bed, the couch, the toilet.

Turn around and offer your shoulders, so that other women might be lifted up out of despair and the blinding pain that incapacitates us. If we refuse to carry each other, we cannot all show up to march. And I think when we are able to march, the synchronized step of 180 million women will result in revolution.

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Endometriosis Awareness Month Has Ended. Has Anything Changed?

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Ribbons. Marches. 5Ks. T-shirts.

Tweets. Facebook posts. Articles. Listicles.

The flurry of activity that occurs around any disease during its awareness month, week, or day, is supposed to highlight an illness. We turn our Facebook profile pictures a shade of pink, purple, or in our case, yellow. We add a ribbon or throw on a brightly colored scarf. I opted to go the horticultural route and replace my photo with that of a technicolor yellow hibiscus. We link to blogs, articles, token video clips of people talking about our disease. We hope that through our efforts, people who have never heard of this particular disease become enlightened and either pass that information on to someone else, or they finally put a name to their own pain. If we aren’t responsible for the proverbial lightbulb going off, we hope we have at least given new statistics, facts or testimonies to the already informed.

When it comes to endometriosis, though, it seems we are stuck in a Groundhog Day of sorts. While people are definitely discussing this disease more and bringing it out of the shadows (after all, it affects an estimated 10 percent of women worldwide), much of the information is on repeat, and the same misinformation gets passed around. Perhaps the authors of these annual articles look to the archives to see what was written last year or hit up Google for a definition. Two out of my first three search results give an inaccurate definition. Remember the game Telephone — popular pastime at slumber parties and school recesses? I think our awareness is a warped version of this — except people keep passing on the bad information perfectly, and activists are operators trying to stop the communication or at least interject and correct it. And there is so much bad information out there. Whenever I tell someone about endo and they don’t automatically reply “endo what?”, I get variations on a theme: “I hear if you get pregnant, it’ll go away.” “My neighbor had that and her hysterectomy cured her.” “Isn’t that a working woman’s disease?”

The French have a saying: La culture, c’est comme la confiture, moins on en a, plus on l’étale, which translates to “culture is like jam; the less you have the more you spread it around.” I feel like this certainly applies to endometriosis awareness when it comes to articles and listicles on the internet. The less factual information the internet has, the more it gets spread around. Awareness is only as good as the information being disseminated. And unfortunately for endometriosis patients, that information is rarely factual and like insufficient jam quantities, leaves one wholly unsatisfied.

We like to blame news outlets and women’s magazines as being the culprits of this misinformation. Anytime a celebrity speaks out about endo, the media throw in a blurb and those of us in the community who know these facts are wrong pass through something akin to the five stages of grief. Denial. (Did I read that right?) Anger. (I cannot believe they printed that.) Bargaining. (If only I had commented on these articles last year! If only I had tweeted how that author was wrong!) Depression. (We’re never going to get the truth out there, it’s hopeless.) And finally, acceptance. (Well, at least they’re talking about endometriosis, right? It’s better than nothing, right? Right?)

The truth is, the information the media use originated somewhere. And that somewhere was most likely the medical community. As recently as this month, The American Congress of Obstetricians and Gynecologists posted on the President’s blog about endometriosis with the aptly titled “It’s Time We Talk About Endometriosis.” And yes, it is. It is time we talked about it, but leading with defining endo as “uterine lining that grows outside the uterus” when in fact it is tissue similar to uterine lining that grows outside the uterus, is problematic. Perhaps a trivial difference to some, but when the organization that releases guidelines on the treatment of our disease to physicians all over the country can’t get it right, a patient despairs. So maybe pointing out inaccurate information isn’t the conversation we want, but it’s certainly the one women’s health activists are having. It’s 2017, and we are still fighting to be heard and to be given good information, to say nothing of our fight for adequate treatment. Has anything changed since Hippocrates wrote that hysteria and the “wandering womb” were to blame as the origin for all female maladies? The conversation we seem to keep having over and over and over again is a one-sided dialogue where we are forced to shut up and take it. With one, very important exception:

After 2,000 years, we’re beginning to talk back. We will not be ignored. And we will definitely not be silenced. Can you hear that? That is the thousands-year-old hum of women’s voices collecting as one. For every woman who was mistreated, shut away or ignored, 10 more stand ready for justice.

Some media have begun to sit up and take notice. Consistently this month, outlets like The Guardian and BBC News have shared quality information with a patient focus, often shining a light on how women with endometriosis are mistreated by gynecologists or not taken seriously, which, second to the pain, seems to be the toughest part of this disease. We still can’t seem to get rid of that pesky, incorrect definition, though. One site that linked to the story (which originated with covering the All Party Parliamentary Group on Women’s Health) gave retrograde menstruation as the cause, better known as Sampson’s Theory (or as I like to call it, the theory we cannot seem to shed — get it?). This outdated theory never could fully explain the origin of endometriosis, and we have yet to find evidence proving it, however it is still perpetuated, even by doctors and respected organizations. The Endometriosis Foundation of America is a great example of the struggle to correct misinformation within its own website. As recently as 2015, the definition of endometriosis as uterine lining was being used on the site. Archives show this was changed at some point in 2015 to reflect what most experts believe, which is that endo is tissue similar to the endometrium. However, the video on the site that forms part of the ENPOWR project — which aims to teach young women about endometriosis — clearly describes endo as a result of retrograde menstruation, friendly animation and all, leaving out all other theories of origin. And the beat goes on.

woman with tape over her mouth that says end the silence

We’re a thousand words in to this, and we are still talking about getting a definition right, folks. We still have a very long way to go and more to add to the dialogue — talking about excision as gold standard treatment and not hormones, for one, and not forgetting postmenopausal women, for another — but the conversation in some areas has experienced a shift, due in part to the social media revolution and to a lot of women who are simply fed up. Patients are no longer leaving their health in someone else’s hands. We are speaking up and looking for answers out there, and realizing when information is bogus and when it is accurate. As in so many areas, it is down to a woman to advocate for herself, especially when it comes to health care. If you want correct information, demand it. Speak up. Ask for proof. Have that conversation, and let others know when the information isn’t correct, so during awareness month next year, we will be beyond our first date, get-to-know-you conversation with endometriosis, and we can move that much closer to a cure.

As for ACOG and the EFA, maybe I’ll send them a pot of jam. Strawberry preserves seems appropriate, no?

This post originally appeared on Endo (In)Visible.

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