woman hanging her head with several people pointing fingers at her

Why should I feel guilty about something I can’t control? That’s what part of my mind says. But the part that actually controls my feelings completely overrides that. This is in part due to experiences I’ve had that have made me feel guilty, whether the feelings were actually warranted or not. Individuals with chronic illnesses shouldn’t be made to feel guilty about their conditions. There was nothing they could do to prevent it. Women with endometriosis shouldn’t be made to feel guilty for having this unpreventable disease.

I was diagnosed with endometriosis two and a half years ago, although my symptoms actually started 14 years prior to that time. Even in the relatively short period of time since my diagnosis, through my own personal experiences and time spent in Facebook support groups, I have seen firsthand the guilt that is placed on us…all due to a disease we cannot control.

We are made to feel guilty for being in pain.

When I was diagnosed with endometriosis, my primary care physician (PCP) willingly took charge of my pain management regimen because she knows enough about endometriosis to understand it can be a very painful condition. But then there was a week earlier this year when everything got messed up. For reasons I still don’t know, my doctor never got the message that I needed a refill on my medication. It took two more days and speaking to three more people to get the message to my physician that at this point, I was completely out of pain medication (I had even put the request in early to prevent this). My pain skyrocketed almost to the point of requiring a visit to the emergency room. Upon talking to a nurse practitioner about the problem, she said the refill may have been rejected by my physician because pain meds can only be filled every 30 days.

*Clears throat, throws on white lab coat.* Listen lady, if you’re going to make up something, don’t make it up to a practicing pharmacist who knows drug laws, because that “law” you just told me about does not exist. A fill of a controlled prescription is based on not being permitted to write more than a 30-day supply, so you should be able to do the math and see that my prescription is for a 15-day supply and it has actually been 20 days since my last fill. Get it right. Then, when she realized I had called her out on lying, she said, “Well, some physicians might deny refills to patients displaying addictive behaviors.” My physician has never accused me of such a thing and even supported a trial of long-acting narcotics for several months (and it was her idea) to get the pain under control until it could be fixed surgically, after which I weaned myself off the long-acting narcotic. But I was made to feel like a drug-seeker by a healthcare professional who didn’t know me or my health history whatsoever.

We are made to feel guilty by trying to rest.

When you have endometriosis, your life changes. You can’t do what you used to be able to do in some cases. In my case, being able to work through my symptoms became a challenge fairly quickly. When my endometriosis was at its worst two years ago prior to my excision surgery, I was practically bedridden. If I wasn’t at work, I was at home in bed, curled up with my heating pad. Strangely enough, if I was at work, I was also curled up on a chair…with my heating pad. But things were certainly quite challenging at home. Due to the timing of life events, my brother-in-law and sister-in-law were living with my husband and me for the summer. I felt bad, because I could have been spending time getting to know them both better, but I just couldn’t get out of bed for anything except needing to go to the bathroom or needing to go to work.

We are made to feel guilty when we deny intimacy.

I will start by saying that my wonderful husband has never, ever pressured me into sex and would immediately stop in concern if it was too painful for me. But the first four years of our marriage were severely lacking in intimacy due to the endometriosis (which we didn’t know about at the time). I felt like a horrible wife for not being able to perform this act of love with the man I love. My husband has never been unfaithful, but there are many relationships out there broken by the fact that women with endometriosis are often too uncomfortable or downright in pain while being intimate with her partner.

But then women with endometriosis are often made to feel guilty for other reasons, too. One thing a lot of people have difficulty comprehending about chronic illness is that it is, in fact, chronic. Which means it isn’t going to go away. We’re not going to “get well soon.” Hearing such questions as “Aren’t you better yet?” makes us feel guilty for not being better, even though there’s not necessarily anything we can do about getting better. I’ve done all I can for myself. I have celiac disease, so I’m on a gluten-free diet, but I will always have celiac disease. I have endometriosis, so I’ve had excision surgery by one of the best excisionists in the world, which is the gold standard of therapy for the disease. But there is no cure; there’s always a chance it could come back. I have adenomyosis, which can only be cured by a hysterectomy, which I will have once I’m done having children – if I’m ever able to have children. But I have to deal with the daily pain until then. So hearing questions like “Why aren’t you better yet?” makes me feel like I’m doing something wrong and should be ashamed of myself for still being sick.

If you know anyone with endometriosis (and since it occurs in one out of 10 women, you probably do), take a moment to try and understand what it’s really like to be in their shoes. Talk to them about it. And understand that, while excision surgery may help, all of the pain from the disease doesn’t necessarily go away after the fact. It might, but not always.

We’re in this fight for life. And it’s helpful to have understanding people by our sides. Will you be that understanding person today?

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

RELATED VIDEOS


Women on social media are encouraging each other to get intrauterine devices (IUDs) before president-elect Donald Trump is sworn into office on January 20, 2017, over fear that reproductive health options will be limited under a Trump administration.

There are many reasons, beyond preventing pregnancy, why women use birth control. For women with reproductive health conditions, like endometriosis, birth control is often prescribed for health reasons.  

 

In 2012, an Affordable Care Act (ACA) mandate was passed requiring all insurance plans to cover birth control pills, implants and IUDs at no cost to the consumer. According to Vox, once in office, Trump can repeal the Obamacare mandate without the permission of Congress. That’s because birth control isn’t protected by the Affordable Care Act, whereas preventative health services for women are. To remove the mandate, all Trump would need to do is ask the U.S. Department of Health & Human Services to change how they define preventative services for women.

 

While women won’t lose access to IUDs and low or no-cost birth control immediately, reproductive care specialists recommend women considering IUDs act sooner rather than later. “This isn’t something to put off, and if you’re on corporate insurance sometimes it takes a while for IUDs to be ordered,” Dr. Anne Davis, consulting medical director for Physicians for Reproductive Health, told NPR. “If you need a long-acting form of birth control, you need to take care of that now.”

The Mighty will continue covering healthcare under the Trump administration and will provide more information as soon as it becomes available. For updates, you can follow Jordan Davidson, our news editor, on The Mighty, as well as on Twitter, for updates when news articles come out. 


Sometimes, only music can speak to the masses to make us feel the emotions that others experience. When you are a woman who struggles with endometriosis, one must find ways to cope with sadness and pain but find inspiration to bring about feelings of hope and humor. That’s where music comes in.

I have found that after letting people know about my disorder, many individuals ask lots of questions. People ask about my back pain that sometimes makes me walk with a limp. They ask about the multiple surgeries I have had to relieve the pain and about the other complications of a disorder that has no real diagnosed cause and no known cure.

Sometimes I have to let people know the gruesome details of my day-to-day issues and sometimes I feel the need to share my life in creative and humorous ways. Lately I have been using the tool of music. It’s the gateway to imagination, to expression and to crossing lines of generations, backgrounds and other barriers.

To help others learn about the different aspects of my journey, I have broken down each day as an endometriosis warrior during my cycle to music titles. From rock to soul, from the ’80s to today’s hits, music talks to us, and it is my way of telling my story of my struggles with my cycle every month.

So you want to learn what I go through as a woman with endometriosis? Look at the following song titles and feel my struggle, pain and hope for making it day-after-day as an endometriosis warrior.

Day 1: “If I Were a Boy” by Beyonce

I promise you that anyone who has this condition finds herself staring at the bedroom ceiling at least once a month, wondering if things would truly be different if she were a boy. A woman can’t help herself — or, at least, I can’t. I wonder if the gender change would make life grander. My mind wanders to the land of imagination, and I puzzle over  whether my health would truly be a different experience if I weren’t a female. If I were a boy, I wouldn’t have to waste so much money on doctor’s appointments. I wouldn’t have to walk around with a supply of maxi pads everywhere I go because I never know when each cycle will start. If I were a boy, I wouldn’t have piles of medical bills year after year; I wouldn’t have to go through embarrassing exams that consist of stirrups, cold hands and awkward conversations about results written on medical charts. If I were a boy, I wouldn’t find myself searching a shelf of medication or flipping the “on” switch of the heating pad to ease the aches and pains of the scar tissue swimming in my body on this first day of dealing with back pain. Day one is the reminder that, once again, I have failed to bear a child and that more pain is on the way. What if I were a boy?

Day 2: “Do You Really Want to Hurt Me?” by Culture Club

By the middle of day two, I have begun to have conversations with my uterus. Yes, I talk to her. There seems to be a lack of communication between the two of us. She wants to do one thing and I want her to behave during this stressful time. I want her to save her issues for after I get out of work, but she decides she doesn’t like the schedule and increases her pain. She, along with her friend endometriosis — who is attached to both our backs — forces me to run to the restroom with a handful of pads because my cycle has gone haywire or makes me grab my abdomen and cringe in discontent. Most of the time, she doesn’t to listen to my complaints and does her own thing, but I find myself asking her the same questions month after month: “Do you really want to hurt me? Do you really want to make me cry?” Most of the time, her answer is, “Yes. My friend endometriosis and I want you to feel that we are uncomfortable and unhappy.” They ask for their other friends, the twin of tubular mayhem and their buddies, angry ovaries, to join in with a vicious war cry. My emotions start to turn into a whirlwind of confusion, and I don’t want to be around anyone. I always seem to be in an argument with my uterus on this day and most of the time, she wins.

Day 3: “A Change Is Gonna Come” by Sam Cooke

In hitting the middle of my cycle, the pain of nature’s process combined with having endometriosis has brought on the feelings of sadness. Many women have depression during their menstrual cycle, but when you add on a condition with no cure, your emotions go into overdrive. I have found that the only thing that helps is trying to focus on hope more than my cramping, need for pills, cravings of foods and the overwhelming beginning stages of nausea. Sometimes I dream of one magical day when there will be a report on the news of progress, of a victory or, as I mainly dream of, a cure. I keep hoping one day someone like me will hear the news that their struggling is over and that their life will be less complicated. But then severe sadness arrives. It’s nothing more than dreaming in my case.

A cure for endometriosis will probably not happen for me due to my age, but I hope that young girls the age I teach will one day hear from a doctor, “Don’t worry, there’s now a cure for your condition.” Many who struggle with this disease become so depressed because others can’t understand how uncomfortable they really are. There is nothing you can do about the condition, and you feel utterly hopeless. On this third day, everything is uncomfortable, and I am surrounded by pain and negative thoughts. There are some points in day three when I just don’t know if I can get up and go on. Sam Cooke best expresses how I sometimes feel when I’m fighting this disease during my cycle:

It’s been too hard living, but I’m afraid to die

‘Cause I don’t know what’s up there, beyond the sky

It’s been a long, a long time coming

But I know a change gonna come, oh yes it is.

I’m going to keep hoping, Mr. Cooke.

Day 4: “Abracadabra” by the Steve Miller Band

By the time I wake up to start day four, I’m dizzy. Severe nausea has arrived too, and chances are, I am throwing up anywhere. I might make it to the toilet, but there have been times I’ve become sick when fresh air hits my face from the outdoors. It happens in the morning as I start my day, and there have been times that I have tossed up my morning muffin in the front yard as my roomie stands by with a look of worry. My head hurts from the nerve pulsing on the side of my head, and I can barely stand most of the time when this day comes in my cycle. If it is not my side where my ovaries are, then it’s the center of my back where the endometriosis has been found time and time again. Then, my abdomen begins to cramp, and I frantically search for pills in my school bag. All of this is happening before 8 a.m. If it is a work day, I struggle in front of my students and worry the gushes of blood will finally reach the point of forcing me to run out of my room in embarrassment. Once I get home, I have no energy left. I want to do the work I need to do for my students, but I just can’t. My flow is so heavy that I have to wear two pads to bed to save my sheets. I’m miserable, and I lay down hoping for some magic that can make everything just seem normal again. I just want someone to say some magic words and make all of this go away.

Day 5: “Stronger” by Kelly Clarkson

What doesn’t kill you makes you stronger

Stand a little taller

Doesn’t mean I’m lonely when I’m alone

What doesn’t kill you makes a fighter

Footsteps even lighter

Day five is when I pray it ends. Sometimes it does, and sometimes it continues for another day or two. At this point, it would be easy to revert to some angry song about oppression and rage that makes me want to punch someone in the throat. That would be the easier way to explain dealing with the last days of your cycle when you have endometriosis. Instead, I make a choice to think positive. I reflect on becoming stronger after completing another week without crumbling. Chronic illness cannot be the thing to destroy you. I have found I have to be strong, stand firm and fight high when it comes to the battles with my body. My cycle and struggles haven’t killed me, despite all the physical, mental and emotional pain I have endured. As I stated before, if you live with endometriosis, you have to be a warrior. So, I stand up as tall as I can and I take on the next day with pride. My footsteps become lighter when I come to an end and have a short time of normalcy.

I never really know when the soundtrack will play again. There are no set days or consistency like other women have with their cycles. It could be a week of rest, or maybe over a month, but it will play again. When the side effects of my illness arrive, I play the soundtrack again in my mind, but I keep on moving and dancing in hopes of surviving each day.

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


Another terrifying (albeit hilarious) reminder of how poorly educated many people are about the female anatomy has surfaced on the Twitterverse this week.

UK-based 19-year-old Ryan Williams has loudly voiced his opinion via Twitter about the outcry to kill the “tampon tax” (the sales tax placed on feminine hygiene products like tampons and pads) and make sanitary products free. He may not have a menstrual cycle, but Williams has made it clear that he’s totally against free tampons because women should be able to “control [their] bladder.”

     

 

 

 

 

 

Looks like someone didn’t pass his middle school sex ed course. Because if he did, he’d know that women don’t just have some single hole between their legs through which things — babies, urine, menstrual blood — pass. And he’d know that, just like when you cut your finger open slicing an onion, there’s absolutely no way to “control” the blood flow (but God, wouldn’t it be nice if there was?).

Since posting the above tweet and others, Williams’ account has bounced back and forth between public and private, and some of the tweets have since been taken down. Taxes and tampons aside, Williams’ blithering has garnered international attention.

More importantly, though, it’s a reminder of the “shush, shush” society that revolves around “women’s issues.” For decades, periods and women’s health have been viewed as taboo. As something to be embarrassed about. As a topic to only discuss behind closed doors without any men present, because — dear God! — don’t let them hear what we’re talking about!

As a woman with endometriosis, a debilitatingly painful female reproductive disease that causes adhesions to form on the organs in the pelvic and abdominal areas, I’m reminded of this every day. Not just because it takes the one-in-10 women suffering from endo an average of six to 10 years to receive a proper diagnosis because most doctors are so uninformed on the subject. And not just because the conventional course of treatment includes drastic and life-altering procedures.

But because, as I’ve said in the past, if men were the ones suffering from a disease that covered their reproductive organs in painful adhesions and cysts while crippling their fertility and sapping their sex lives, I think we’d have figured out a better course of treatment by now. Scratch that — I think we’d have figured out a cure.

Like every woman with endometriosis, support from my male counterparts is critical — and it doesn’t end with the men in my personal support system. We need all men to better understand endometriosis and other women’s health issues. And we need them to join us in raising a rallying cry that demands research dollars, treatment options, and the education of the Ryan Williams of the world.

Follow this journey on Coffee With Kaite.


In August last year I had my first injection of goserelin under the brand name of Zoladex. Zoladex (or Lupron is a similar injection that does the same thing!) is a type of hormone therapy drug that’s most commonly used for treating certain types of cancers. It’s also pretty nifty at putting the womb and ovaries into a menopausal state, which in my case significantly improves my symptoms of endometriosis.

I never expected myself to be menopausal at 25 when I was younger, however, 13 months on that’s what I still am. Over that time I’ve had to pick up a few tips and tricks for coping with some of the unfortunately unpleasant side effects that come with it and I thought I’d share those with you today. 

1. Wear loose clothing and layer up on thin items of clothing that you can easily take off to regulate your body temperature. You’re going to get hot. Embrace the kimono. My friends will vouch for me that I have an impressive array of kimonos and lose fitting clothes. They’re perfect for adding layers and covering up if you don’t like showing too much skin but they’re also airy and allow the skin to breathe. If I wear jumpers or even slightly thicker knit cardigans, I am mopping at my face and wafting myself with whatever I can find to create some breeze. It’s not a good look in the depths of winter I can assure you and people look at your like you’re mad.

2. Drink plenty of water. You’re going to sweat a lot if you have hot flushes and I find myself with horrendous headaches if I’m having a day where I’m flushing and therefore sweating a lot. 

3. Invest in a portable handheld fan! I cannot tell you how much this helps with flushes. My friend recently bought me one for my birthday and let me tell you, it helps massively because you’re not actually having to use any energy (therefore creating more heat!) to fan yourself.

4. If it interests you, talk to your doctor about a hormone replacement therapy. Before I started taking HRT I was having 20 or more flushes a day. I have about five a day now which is a massive improvement. I still get one at 11 a.m. everyday and I have no idea why. 

5. Stock up on healthy snacks. If you’re anything like me you’re going to have food cravings and you don’t want to be snacking on a ton of unhealthy food while in a menopausal state, because your body holds onto weight much easier and you may find yourself gaining weight like nobody’s business. I’ve put a stone on in a year and it’s impossible to shift it while I’m still in the treatment. 

I hope this helps someone who’s just starting their journey into being in an induced menopause (or even a natural menopause!) because for the first few days of my treatment, I wondered what on earth was happening to me and those days were pretty miserable. Some lucky people don’t seem to get any symptoms at all but of course that’s not me because I like to be awkward. 

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

This blog was originally published on Those Amber Lights.


I remember the instant I found out trouble was afoot (in my reproductive organs, that is). It was July 2013. I was mid-ultrasound — one that my primary care physician had me schedule to check in on the IUD that had been placed several years before.

Without a concern in the world, I was chatting casually with the technologist when she made a strange face.

“Hmmm,” she said, her eyes glued to the monitor in front of her. “The IUD is fine, but it looks like you have an ovarian cyst.”

My anxiety immediately went into overdrive. Excuse me? A what? Where? I tried to keep calm as she explained she couldn’t tell me much more, and that my doctor would follow up once she had reviewed the results.

A day or two later, my doctor did indeed follow up with a cryptic call, telling me to swing by her office when I was out of work.

“Swing by,” she said, as if we were besties and wanted my opinion on the new sweater she’d bought. Swing by I did, only to find out for sure that what the tech spotted was indeed a cyst. A complex cyst, which appeared to be an endometrioma. I remember being partially relieved. I had been experiencing extreme pain for over a year, and at least now we had outlined the cause.

More so, though, I was worried. Especially because, instead of explaining the various options and years of treatment I was about to endure, my doctor instead opted to peddle the most extreme treatment — the removal of said cyst, along with the ovary it sat on — as the most likely one.

I went home that day and bawled my eyes out. I was 25 at the time. My now-husband and I were still months away from our engagement. What if I couldn’t have kids? Would he even want to propose to me now? Like this? We hadn’t planned on having children for at least five more years. Would we be able to?

What I Wish I’d Known About Endometriosis

In the years since that ultrasound and the doctor appointment that followed, I’ve been diagnosed with endometriosis and undergone a barrage of treatments and medication. As with many endo patients, pain has become my new norm. Over time, I’ve learned how to adjust my life accordingly.

Unfortunately, endometriosis and chronic illness don’t come with an instruction manual. If they did, here are a few things I’d want them to cover:

1. Listen to and obey your body.

I can’t stress just how crucial it is to listen and respond to your body. It’s so much easier said than done. There have been countless times I’ve listened to and ignored the cues from my body telling me to take it easy — like the other Saturday when I scheduled for myself a day and night full of events, only to spend the next three days feeling like I was fighting the flu.

In the end, you’re the one who pays the price when you ignore your body. Don’t guilt trip yourself for making well-being a priority.

2. Build a strong support system.

The unfortunate news is so many people just won’t get it. Friends will take your inability to attend events for unwillingness. Bosses will confuse bad days caused by chronic pain or fatigue for poor performance. Skeptics will assume you’re making it all up.

Lose the naysayers. Chronic illness is tough enough as is. Surrounding yourself with your biggest cheerleaders — friends, family, doctors — makes it easier.

3. Quit it with the comparisons.

This includes but isn’t limited to comparing yourself to friends, to family members, to co-workers, to your partner’s previous significant other, to strangers on the internet, to the lady on the treadmill next to you, to the other dog owner you met in the park last weekend.

The toughest comparison to stop making? The one to your old self.

Endometriosis and chronic illness can be such difficult pills to swallow — particularly the whole “chronic” part. Most doctors don’t really give you a heads up on how it will affect your life. No one tells you how to navigate accordingly.

My best advice? Take it one step at a time.

Follow this journey on Coffee With Kaite.

Lead photo source: Thinkstock Images

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.