Navigating Relationships With Endometriosis

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“Quit being so needy!” “Why are you so whiney?!” “Are you really that lazy?” Being labeled by caregivers and loved ones because of endometriosis is one of the worst mistreatments a patient can receive. An endometriosis patient takes more than she gives. That’s simply the nature of the disease – it takes. With that, people close to an endometriosis patient can quickly become frustrated because we never seem to get better, or when we do, it’s often fleeting. Because of this, women are often labeled as “needy,” “whiney” or “lazy.” The latter being the one almost everyone in my life, when playing pin-the-label-on-the-sick-person, chose to ascribe to me. I wasn’t lazy; I was sick.

Endometriosis can cause extreme fatigue, and we patients become dependent on those around us to help with even the simplest of tasks. Yes, even that time I asked for help popping the tab on a can of Diet Dr. Pepper because I had already exhausted all of my energy to walk to the kitchen, open the fridge, bend over, and pick it up. When one asks for help (because we’re told “Anything you need, I’m here for you”) and the request is met with “Are you really that lazy?!” it’s then most damaging because in our vulnerability, when we finally decide to reach out, we are mocked and labeled.

 

Living in Pain

Before my diagnosis, my symptoms created turmoil between me and my parents. Many times my father would say to me, “You’re too young to be this tired. When I was your age I worked four jobs and got four hours of sleep a night. I managed just fine.” Other times, my mother would become frustrated with my frequent napping and mock me in a high-pitched exaggeration of my own voice: “But I’m tiiiirrrreeeedddd…” I heard the labels “worthless,” “trifling” and “waste” tossed in my direction. This was meant to be tough love for me to “wake up and get it together.” But all it did was hurt my self-esteem and cause me to be even more unmotivated. I did not like disappointing my parents.

I was in graduate school and I taught English at a local community college. This was a lot of responsibility for a 24-year-old, and by the end of my work day, I was spent. I would come home and sleep for five to six hours. Some days, I couldn’t get out of bed and I’d cancel classes or miss my own classes which frustrated my students and caused my grades to plummet. In my parents’ defense, superficially, I probably just looked lazy. What they didn’t know was, day after day, endometriosis eroded my reproductive organs, attacked my bowels and inflamed my bladder – parasitically sucking my energy, drive, ambition and will to succeed right out of me. After lectures from my parents, I would lie in my bed with the heating pad between my legs and question myself. My parents loved me and only wanted the best for me.

But what if…

What if the pain I felt wasn’t actually that bad and other women managed it better?

What if my exhaustion was normal and I was, in fact, lazy?

What if I just couldn’t hack this life?

I was a young college graduate at the beginning of my career, and I was blowing it. They both knew if I pulled up the roots of a budding career, I’d never forgive myself. On the other hand, validation of my effort to make it through the day would have been equally as important. One good “‘Atta girl” could have made the most difference.

Two years later, when I finally got a diagnosis, my parents’ tune changed. They gave me space to rest, space to heal and help whenever I needed it. Frustration became facilitation, and I had nothing but support and help from them. Alas, healing only came in the parent/child facet of my life. My relationships, both platonic and romantic, suffered from endometriosis as well.

The University of Alabama School of Medicine defines endometriosis as “the tissue that grows inside of the uterus…grows outside of the uterus on other organs or structures in the body.” It goes on to explain that the tissue still acts as if it normally would inside the uterus by “thickening, breaking down and bleeding.” When endometriosis flares, each little implant has a period. So, my body was having thousands of little periods amounting to one large mega-period throughout each month.

When one hears the word “period,” it’s typically associated with mood swings – which, of course, I had. The sudden bursts of anger, sadness, paranoia or despair caused rifts between myself and friends who ultimately labeled me as “weird” or “psycho.” High school friends drifted further and further away from me. The pain and mood swings fashioned me into a less and less gregarious version of myself. Invitations to hang out slowly stopped. Heartbroken, I assumed all of the blame for every lost friendship. In my car, on the way to and from school, I’d talk myself to the point of tears.

Why does no one like you?

Why are you so weird?

Why can’t you be normal like them?

Why do you get so emotional and make weird decisions because of it? Control yourself!!!

After so long, I would dread the commute to school and back because I was forced to be alone with my thoughts. Even I labeled myself.

Romantic relationships became increasingly difficult for the same reasons. At times, my boyfriends would label me a “bitch” or “crazy.” Truthfully, I was, but not because it was a personality trait – my hormones were haywire. In my first marriage, though I was already diagnosed, my husband labeled me as an “ice queen” because of the lack of intercourse. Like anything that inflicts pain upon a person, I avoided it. Painful intercourse or dyspareunia is a common symptom of endometriosis and can be a relationship killer. Pain, bloating, diarrhea, urinary pain, acne from the stress and hormone surges don’t exactly invoke the sex-goddess that’s supposed to be in us women. I felt like a failure almost every time I’d attempt sex, and as soon as deep penetration happened, I would hiss in pain and retreat – profusely apologizing.

Apologizing.

Because I felt guilty for something I couldn’t help. After every laparoscopic ablation or Lupron injection, I’d hear, “I thought you said you were fixed.” When, maybe for a time I was, but like clockwork, endometriosis symptoms would recur and it would be the same old fight over the same old thing. “You’re always sick.”

No actual label was ascribed to me during this period of my life, but there were definitely a couple that were implied: “exaggerator” and “bad wife.” To fix this once and for all was to have a hysterectomy. Once I made the decision, I was labeled by acquaintances and distant relatives as “selfish,” or I was pitied for being “barren.” Southern culture pressures young women to be mothers as soon as possible, “because life doesn’t begin until after baby.”

It’s typical of me to not adhere to traditional roles. But, to some outside of my family, the decision to have a hysterectomy before I had children of my own – especially since I was married – crossed the line of good taste. To them, I was selfish to deny my husband and my parents children and grandchildren. Don’t think for a second I didn’t take this to heart and rake myself over the coals. I felt I always came up short and was always a disappointment. I simply couldn’t win.

A “perfect wife,” I was not. More than just endometriosis ended that relationship; however, I will say the passive-aggressive comments coupled with being mocked and insulted by my spouse over a disease for which I didn’t ask left me feeling dejected and tired. Rock bottom was after my hysterectomy. He walked in the living room while I was lying on the couch, handed me my bottle of pain pills and walked out of the door.

His departure forced me to accept how low I was on his priority list. I was hurting physically and emotionally, and my husband wanted to be anywhere other than where I was. A few years later, when I was financially stable and healthy, I realized I deserved better and I ended that marriage.

In each period (no pun intended) of my life, I wish I would have handled being labeled much differently by doing the same thing for each – by being kinder to myself and reminding myself, “You are not who they say you are.” Labels are attached to describe something, but what happens to labels? They get torn off. They get wet and blur. They fade over time. Those labels were never representative of my character, personality or any other aspect of my personhood. It’s important for those around us to recognize the power of their words and the labels they affix to people.

Two months ago, I had my final laparoscopic excision of endometriosis. At 34, I refuse to let myself be labeled as anything but a warrior. My family and friends waged war against endometriosis right along side of me by encouraging me, reminding me it was OK to rest and practice self-care, helping me financially and encouraging me to write again for the sake of spreading awareness – even if they aren’t always painted in the best light. They want others to learn from their mistakes.

woman with her jeans unzipped to reveal her endometriosis awareness ribbon tattoo on her lower abdomen and a sticker on her stomach that says 'warrior'

I’m now in a healthy marriage with a man who shows me every day my well-being is a top priority. When we got the news that my endometriosis was flaring after six years post-hysterectomy, he made it his mission to seek out proper care by a specialist. He drove me to and from appointments. He sat patiently in waiting rooms. He accompanied me to the exam room when I was scared, and he never once used my illness to guilt, shame or label me.

Helpful Healing

If you are a parent, and you notice your daughter is not herself, if she sleeps a lot, complains of painful periods or gets abnormally fatigued, instead of labeling her as lazy, ask her why she’s sleeping. Ask her to describe what she feels in her body.

Listen.

Seek solutions.

If you are a spouse or partner to an endometriosis patient, practice patience and love, and never use your partner’s illness against them. If you are simply a casual acquaintance of an endometriosis patient, listen and hear before you label. You have no idea the battle she is fighting. Endometriosis already is trying to destroy her humanity.

Don’t help it.

Remember, the labels you adhere to a person can be temporary. A kind word and encouragement, she’ll carry for a lifetime.

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When Endometriosis Makes the Womb Feel Like a Vampire

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There goes Billy Corgan, again, a rock icon and my own personal hero, inspiring me to tell my story in one way or another. I spent a good two hours thinking of a metaphor to which I would equate endometriosis, dejected because I’ve not had much luck creatively describing what endometriosis is, let alone coming up with a metaphor for it. Until, my husband Brad switched the radio to Lithium on Sirius XM, my favorite band Smashing Pumpkinsʼ “Bullet with Butterfly Wings” started playing. Billy, at the beginning of the song, unapologetically sings, “the world is a vampire sent to drain.”

Then lightbulb went off, “God. So did endometriosis. It’s a vampire.” Endometriosis is a vampire, “sent to drain” the life from the women who are affected by it.

It sneaks in…

The vampire I picture is more like Nosferatu, contrary to the sexy, sparkly kind of late, but uglier, scarier, and sneakier. Nor is a tangle with said vamp enticing. It’s horrific and the victim is overtaken before she knows it. My personal experience with endometriosis started with bowel symptoms when I was very young. Year after year, my parents would take me to gastroenterologist after gastroenterologist (GI) in hopes we’d find a solution for my horrible stomach cramps and incontinence.

Nothing.

My tests and colonoscopies, “looked good.” But I wasn’t good. I accepted that my bowel trouble would be my burden to carry, but then those bladder symptoms happened about a decade later. At 26, I was trying to work and go to school, but man, that agony of trying to poop or pee really got in the way of my professional life – to the point where I lost my career over.

Ehh… another casualty. I was seeing a GI and a urologist. I had a cystoscopy to determine if I had interstitial cystitis – a painful bladder syndrome, but everything “looked good.”

My follow-up appointment with my urologist was a few weeks later and I sat in the exam table staring at the sterile white walls, I heard the door crack and my doctor walked in.

“Elizabeth, (my fancy first name) your cystoscopy was fine. You don’t have interstitial cystitis. But you mentioned you had pain after sexual activity, yes?”

“Yeah.”

“I think you have endometriosis. You need to see your obstetrician-gynecologist (OBGYN) as soon as possible.”

So I did. I had a diagnostic laparoscopy, and sure enough, it was there. After nearly 10 years of misdiagnoses because of the vague symptoms that present as other conditions, endometriosis was present – sucking the fertility out of my reproductive organs.

A woman shows her endometriosis tattoo, along with a sticker that reads, "Warrior."

I’m lucky enough to be a part of a community of women who are also “endo warriors.” Some I know and some I’ve never met, but the one thing we have in common is that we’ve lost jobs or almost lost jobs because of endometriosis. Not only will it destroy a woman internally, but it will sneak attack other facets of a woman’s life. My career wasn’t safe. There were days in which endometriosis sank its teeth so deeply in me, I couldn’t get out of bed. I wouldn’t make to a gas station bathroom on time, I’d vomit on myself in the car because the pain was so intense – because of all this I constantly had to call in and cancel classes. I was also a graduate student and I missed too many days in my own classes I was taking. I ended up dropping out of graduate school in 2006, consequently loosing my teaching position. It was my first year out of college in the working world and 6 months in, game over.

Sucks the love right out of life.

Relationships, platonic or romantic, are hard enough for a healthy person. But man, endometriosis goes for the kill by putting strain on the very thing that keeps our heads above water – our loved ones. Hormone surges, mood swings, urinary pain, bowel incontinence, you name it. Dealing with these symptoms, at times, does not a pleasant women make. Which, of course, will alienate every loved one a endometriosis patient has. That’s the cruelest part of the disease – it won’t stop draining you until you’re not only in agony, but agonizing alone.

Stake through the… uterus?

Even vampires have foils. Stake through the heart, crosses, garlic… and endometriosis has treatments that offer relief, but no cure. Endometriosis is immortal like a vampire, ablation and excision offers the “burn it and send it to hell” that usually ends all vampire tales.

Now, there are sequels to vampire stories. I mean Vampire Lestat hung around for a while and Bella and Edward kept on with the awkward sexual tension for as many years as they could milk, but they did end. Just like I found relief with a hysterectomy and excision surgery. I feel lucky and grateful to finally have relief from my symptoms after so many years, but I also know my relief is not a guarantee. Five or six years from now, those symptoms could creep back in my life and sink their teeth in.

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Photo by: Brad White

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Why I'm Talking About My Dark Times With Endometriosis

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This is my safe landing place, my ground to test, and try, and mess up, repeatedly. I’ve always loved sharing my life with you all because of the wonderful connections I’ve made with you. Especially women I’ve connected with who also have endometriosis or are living with a chronic illness. Writing about my journey also is very therapeutic – something about my fingers hitting the keyboard allows me to express everything I’m feeling with ease. I guess you could say I’m not very verbal when I’m in a dark place.

Lately, my pain levels have been out of control. I wake up and it hurts, I go to sleep and it hurts. I’m in a season right now that I don’t know how to navigate, and I feel incredibly alone and afraid. It’s funny how you can still feel loneliness when you’re almost always not alone. I think that’s part of the demon that comes along with any chronic illness – it wants to make you feel that way.

Pain has the ability to completely take over and transform you into someone you don’t recognize.

Some days are better than others, and on those days I make sure to take full advantage. I make sure I’m doing fun things with my family, and really knocking things off my to-do list. On those days I feel like myself; I feel so productive and happy. Then something happens inside my stomach, something gets angry and irritated and just flat out flips out. It’s a slow but steady storm that gets more and more intense.

Every time I’m having a bad pain day I try and think about all of the young ladies who have e-mailed me asking for advice. Girls who are 16 and 17 and who have just been diagnosed with endometriosis. I think about who I want them to see, someone who lets the illness control her, or someone who gets up, dusts herself off and fights right back. Most days I choose to fight back, but lately the fight has left me. When these girls reach out..

I want to tell them everything will be fine, that they’ll figure it out – but in all honesty, I don’t know if that’s true, because I’m not fine.

How can I possibly give someone advice when I myself don’t have it figured out? How can I tell them they’re going to be fine when I’m struggling, someone who has tried nearly everything? So, what’s next? The doctor is recommending a presacral neurectomy, but in all honesty, the long list of complication risks associated with it scare the hell out of me. For the time being, I won’t be moving forward with that, and will be tackling a clean eating diet and possibly starting back up with physical therapy.

I wanted to share this dark time with you because I wouldn’t want to be anything but honest with you. I am going through a really difficult time, but it is part of my journey. It’s part of my endometriosis story, and documenting the dark times, the hard times, will only help others understand just how intense this illness can be. As always, I have too much to fight for to let this beat me.

I have too much love in my heart and light in my life to let this darkness take over.

To the women out there who are out there fighting beside me, I’m sending loads of strength and love your way. XO.

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How Endometriosis Has Affected My Sexuality

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This is going to be a bit graphic and focus on sexual relationships when you struggle with endometriosis (although some of the issues aren’t exclusive to that). Not everyone will feel comfortable reading it. It was important to me that I wrote this because it’s one aspect that is rarely spoken about and it’s about time women felt able to share their experiences without shame.

I’m gonna start this with a quote from one of my favorite humans, Brene Brown, “If you put shame in a petri dish, it needs three things to grow exponentially: secrecy, silence and judgment.”

When I first watched her talk about shame and discovered this quote I felt a huge sense of relief. I realized I could finally pick apart my feelings around sex and intimacy now that I knew they mainly came down to feeling a sense of shame, as I was struggling to make connections with people and with myself. I’ll start with the awkward feelings when meeting someone new.

So, I’ll set the scene. (This is mainly pre-diagnosis.)

I’m meeting up with someone I’m interested in and health aside – I’m always extremely anxious. I feel so anxious and awkward that I honestly can’t even sit opposite of people (it makes me feel like I’m on “The Apprentice”) and often make them sit next to me.

I’ll make sure I’ve maxed out on painkillers but leave some time before I drink, in a vain attempt to protect my liver. But I usually feel too nervous to eat, which isn’t good considering I generally get there early and down some sort of alcohol before they arrive.

In the back of my mind I’ll be worrying about pain: when and if it’ll start, how bad it will be, whether I can hide it from them or it’ll come across weird that I keep taking painkillers whilst drinking – or constantly going to the toilet. But maybe it will all go well. They might expect to come back to my place, which is a normal expectation, but not when sex can be so painful that you feel it for days afterwards. So I weigh up the pros and cons in my head, all whilst trying to remain attractive, attentive and relaxed and go with whatever I feel at the time.

If I feel comfortable to say anything about how I can sometimes struggle with sex, it’s a big weight off my mind, but a lot of people don’t want to hear about your strange illnesses when trying to get with you in a casual context. And if I do choose to have sex, I’ll be so scared of it hurting that I’ll barely be in my body and will be distracted, anxiously going through the motions.

 

This isn’t supposed to sound really tragic; I’m just recounting what happens when you attempt to have enjoyable sex with a condition that particularly affects your sex life.

When you have endometriosis the following things can happen after (penetrative) sex:

1. Feeling like you’re going to pass out.

2. Passing out.

3. Throwing up.

4. Bleeding, a shocking amount.

5. Bleeding and cramps, for three days to a week afterwards.

6. A super sharp pain for no apparent reason during actual intercourse, which makes you need to stop immediately.

7. Suddenly feeling really upset and crying.

8. Excessive shaking and lack of energy afterwards – and not in a nice chilled out way.

These issues, along with the cocktail of hormones in your body, mean that enjoying sex can be a huge problem. The fact is, a lot of people without endometriosis can have similar issues to those that I’ve listed, or even just feelings of shame. It’s so isolating having these experiences, even with understanding partners. Not having an understanding partner can make it significantly more upsetting and make you afraid of intimacy whilst wanting it badly because you feel so out of touch with your body.

I don’t go in for dating much these days and when I do, I’ll try my best to explain the situation and make sure that the person involved has understood. It’s important that you feel safe, cared for and respected. If you don’t, then it might be best to wait until it feels right with someone. I definitely had a lot of experiences I regret with a lot of people who didn’t respect what was happening to me, and it really wasn’t worth it.

You can’t protect yourself from all negative experiences and you have to be willing to vulnerable with people, but it’s so much more important to think about what you really want from an experience first. For me, I know that a lot of the time I just wanted validation, and I’m not saying that that is a positive or negative thing, it’s just something that all people want. This disease can make you feel so devoid of sexuality, so out of touch with your ability to love anyone and can lead to you looking to other people to feel better. I’m not saying this will never work – the positive experiences I had with people gave me a huge boost and reminded me that in general, people are kind and genuine. But check in with yourself before you get into situations like these; ask what you want out of it and what they might want from you. It could ultimately save you a lot of heartache and endless lying in bed with hot water bottles.

A photo of the writers stomach, showing the physical signs (redness) of her conditions.

I spent a lot of my time in relationships sitting in sexual health clinics trying to find out what was physically “wrong” with me that made sex painful. A lot of that only made the situation worse. Many were unsympathetic and quick to dismiss me when nothing was obviously wrong. If you’ve ever had speculum examinations before, you know they are usually pretty horrific, and when repeated all the time they make you want to forget you even have a vagina, leaving you wanting to give up on the whole thing. The final straw was when I tried to speak to someone about the painful periods I was having, along with incredibly heavy bleeding, dizziness, sickness, etc. I also briefly stated that I suffer from anxiety, but that seemed to be the only problem the doctor picked up on.

She referred me to a sexual dysfunction clinic, which further told me that the problem was “all in my head” and made me not want to talk about it. I didn’t go to the appointment, and instead felt ashamed about the fact that I couldn’t enjoy any kind of intimacy with my partner. I felt as though it was all my fault. And because of how shame works, I stayed silent about it and so it grew and took over the way I viewed myself and my relationship. It got to the point where I needed to be alone, be honest with myself and figure it all out. Which was hard, but necessary.

I still haven’t figured out this side of things completely, but I know that taking time out to understand my body and sexuality helped a huge amount.

It might feel like you’re broken beyond repair and will forget how to connect to people in a sexual or romantic way, but that’s not true at all. Try as much as you can to be patient with your body and wait until you’re in the right situation, with the right person, before you allow yourself to be vulnerable. I needed to be alone, but not everyone will. Just be patient, don’t be ashamed and try and be as honest as possible and hopefully, things will get better.

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Thinkstock Image By: Eyecandy Images

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Why Cosmopolitan's Sexy Endometriosis Statistic Is Damaging

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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.

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How Chronic Pain Made Me Feel Unworthy of Love

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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.

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