Halsey Shares Chronic Illness Hack Those With Pelvic Pain Might Recognize

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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.”

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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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A young African American woman lying on a couch in pain.

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.

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

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.

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

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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