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

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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?

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Thinkstock photo via Getty Images.

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How Chronic Illness Is Like a Fire

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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.

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Thinkstock photo via iplan/a.collectionRF.

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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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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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