How My Endometriosis Journey Inspired Me to Start a Business

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Over nine years ago, I would never have dreamed of starting a business let alone devoting many years of my life to a cause that hardly anyone knows about. Nevertheless, that’s exactly what happened.

An estimated 179 million women struggle silently with endometriosis, a disease that affects women and young girls during their reproductive years. It can leave many infertile and some sadly on the verge of suicide from the debilitating stabbing pain. It is called endometriosis and I know all too well about it.

Like so many women in this world who are struggling daily with chronic pelvic pain, I share a deep understanding and empathy for what they are going through due to my own grueling, 13-year battle with endometriosis.

At the tender age of 5, I was thrust into the world of pain due to a freak accident where I experienced trauma to my pelvic floor/crotch from a playground slide accident at the local playground. Upon my harsh landing, the rubber heel of my Keds shoe struck deep into my pelvic floor, causing instant bleeding and excruciating pain. My first thought was that I just urinated all over my overalls and my mother was going to kill me – until I saw blood quickly saturating my clothes. This event would become the beginning of a long, painful journey with chronic pelvic pain.

After struggling with ongoing, debilitating menstrual cramps and heavy dysmenorrheal, I was finally diagnosed with endometriosis at the age of 27 through a routine laparoscopy. I began to learn about my options, if any, to manage the disease and try to live a so-called “normal” life. I was given monthly injections of Lupron, which is compared to chemical menopause, for six months to shrink the endometrial tissue. Just into my third month of treatment, my body began to exhibit the harsh side effects. I lost weight despite my already petite frame and struggled with severe insomnia, night sweats and depression – not to mention the toll it took on my marriage as a newlywed. The six-month treatment allowed my endometriosis to shrink and ultimately, I was symptom-free for over one year.

The thought of living with endometriosis was again a true reality when I discovered that it returned. I experienced two miscarriages in my late 20s and early 30s; my delicate body could not handle carrying a child. Sadly, during this time in my life, my marriage would end due to the constant mood swings and bouts of pain that caused my emotions to go up and down, the ongoing doctor visits, the financial strain…the list goes on and on.

Finally, at the age of 40, I hit a wall. My body could no longer get out of bed to go to work. The ongoing heavy bleeding brought on severe anemia to the point where just getting out of bed was a huge task. I looked weak and pale and my employer was beginning to show concern over my excessive tardiness. I finally decided to succumb to surgery and undergo a supra-cervical hysterectomy.

The day of my hysterectomy, I was by far the happiest patient in the recovery room. Even though I was in pain from the surgery, I already felt better. Once my body healed, I was happy, vital and full of energy like never before. My endometriosis was removed and there was no sign of it returning, which is unusual for most women. I managed to keep my right ovary so I was producing my normal cycle and had my hormones.

I feel blessed to be one of the lucky ones as I have heard horrible stories of the continuous pain women endure after having such a surgery. The only downside that I have from the surgery is adhesions. Overall, I could not be happier compared to the daily stabbing pains and blood loss I had from endometriosis.

Throughout the course of my career, I have struggled to maintain a good attendance record due to having this disease. I learned that employers are not as understanding as I had hoped, nor will co-workers understand how you can “look” healthy but otherwise be quite ill. Slowly but surely, I learned to form a protective barrier around myself in order to avoid the negative remarks being said. Over time, it does break you down and takes its toll on your morale and overall outlook on life, people and the world in general.

Nearly two years after my hysterectomy I discovered that adhesions had formed during my surgery. At first they did not seem to bother me, but over time I felt like a puppet on a string. The pain was different; however, it sadly brought on more sick days at my workplace.

I began to understand that the life I thought I intended to live was not the life I could actually do. With little to no support from my employer, I decided to make a change and start my own business to help other women who are going through the same situation.

In retrospect, I believe living with endometriosis enabled me to utilize certain skills I did not yet know existed. I would soon discover the common thread I shared with so many people and from that, a business idea would be born.

During my last three or four years working for my employer, I designed a special heating/cooling pad that hugged my stomach and pelvic area, providing me long-lasting heat. I was thrilled at how well it performed and used it daily to relieve my pain. I owe the EndoFEMM® Pad’s design for prolonging my inevitable hysterectomy for an additional three years. My dependency on pain medications lessened, my body could relax and I slept more soundly.

After a successful Product Focus Study with the prestigious Endometriosis Research Center where they determined through their findings that the EndoFEMM® Pad was a viable product to reduce pelvic pain, a business was started. I officially had my first website in November 2006 and began to sell the EndoFEMM® Pad almost immediately.

As the President and owner, I have singlehandedly spread the word about my pelvic therapy pads through Facebook, Twitter, LinkedIn and other network portals. In addition, through hard work and sheer determination, more and more doctors and physical therapists are learning about my products and their effectiveness in relieving pain. I cannot exclude my wonderful and devoted customers who continue to provide their support to help spread the word to family, friends, doctors and physical therapists.

Upon starting my 10th year in business, I was excited to be approached by an amazing man who saw my potential and wanted to be part of the team to grow my business. The need to expand is growing after Endometriosis Awareness Month in March and through more awareness and yes, hard work!

Approximately 15 percent of women experience chronic pelvic pain during their reproductive years, but many more may experience acute pelvic pain at any point in their lives, no matter their age. My customers range from 12 to 80 years old! I am just one woman among thousands who understands the daily struggle of living with pelvic pain and is trying to make a difference. My drive comes from the women I speak to every week who inspire me to keep going. It is my hope to someday “pay it forward” as well.

This post originally appeared on Perfect Mind Perfect Body.

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Thinkstock photo via g-stockstudio.

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People Are Not Happy With Motrin's #WomaninProgress Ad Campaign

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Update: Motrin has removed the video featuring Katherine’s story from its ad campaign. “We created this video as part of an ongoing effort to pay tribute to women who overcome adversity. The intention of sharing Katherine’s personal story was to offer inspiration to others,” a spokesperson for Johnson and Johnson, Motrin’s parent company, told The Mighty. “After hearing comments about the video, we now understand that it did not communicate this intention, we’re sorry, and we have decided to take it down.” 

In February, Motrin unveiled its #WomaninProgress ad campaign. Now, two months later, the campaign, which centers around weekly videos of women who are “transforming their painful experiences into progress,” is stirring controversy for a video featuring a woman living with endometriosis and infertility.

The video shares the story of Katherine, a woman who, after difficulties getting pregnant, is diagnosed with endometriosis – a condition where tissue similar to the lining of the uterus is found outside of the uterus – which can cause chronic pain and infertility among other symptoms largely affecting quality of life. Following her diagnosis and infertility, Katherine, in the video, explains, “I’ve never felt pain like that in my life,” to which the video responds with a stat “More than half of all women see pain as a setback.” Later, after Katherine explains the emotional pain she faced managing her infertility, the video asks “What if pain can also be progress?”

On Thursday, the ad began to spark negative feedback from women in the endometriosis and infertility communities, with many calling the ad “tone deaf” and “offensive.”

“What if my husband and I are just infertile without having endometriosis? How am I supposed to turn that pain and heartbreak into ‘progress?” One commenter wrote. “This is the most tone deaf and hurtful advertisement I’ve seen. If I want to be told how much a woman’s worth is based on motherhood, I’ll go to church. Thanks.”

“As a therapist, I’m appalled at how this commercial downplays the emotional, mental, and physical drain chronic pain can have on a person. Pain is valid. Someone is not less of a woman for dealing with their chronic pain,” another shared.

Those commenting on the ad also say it promotes stereotypes about endometriosis, also known as “endo,” a condition for which the “gold standard” treatment is surgery with an excision specialist, and not over the counter pain relievers.

“Just curious, did you do any research on this disease before making this ad?” one commenter asked in the comments of the Facebook video. “Endometriosis is debilitating and this advertisement is the opposite of validation in a world where endo sufferers fight to be heard and helped on a regular basis. Motrin doesn’t touch the kind of pain that endo causes, and adopting a beautiful child is not a cure for any disease. This ad is just another piece of misinformation on a serious and insanely common disease.”

The video has since amassed more than 100 comments from women criticizing the drug maker. Some women, many of whom shared their own stories of living with and managing chronic pain with the brand, have asked Motrin to end its campaign and apologize to the community. “This is one of the most insensitive, uninformed commercials I have ever seen,” one woman shared. “In my opinion Motrin owes the endometriosis community a huge apology!!!”

Others thanked the brand for trying to raise endometriosis awareness, but said the company’s message is misguided. “I would first like to say thank you for recognizing endometriosis as not many big companies have yet. BUT as a woman suffering with endometriosis for the last 17 years, this is absurd!! #1, Motrin WILL NOT help infertility and #2, Motrin WILL NOT help the terrible pain that comes along with endo.”

Following feedback on its Facebook video, Motrin appears to have removed the video from its Facebook timeline as well as its YouTube page. Comments for all of the videos on the YouTube page have been turned off.

Katherine’s story is not the only journey featured in the video campaign. Other stories include Jessamyn, an aspiring yoga instructor who faced bullying and self-esteem issues; Hayley, a stunt actress who fractured her spine; Kelli, a sports agent who pushed past sexism and Alyssa, a single mother who managed during financial hardship. Katherine’s story is only video in the campaign that has drawn negative feedback.

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The Anxiety of Suspecting an Endometriosis Diagnosis

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About two years ago, I was diagnosed with fibromyalgia. The road leading to diagnosis was a long and stressful one to travel. Honestly, I think I dealt with many of the symptoms for years, always fearing I was a hypochondriac or just overly dramatic. So finally getting a diagnosis felt like a validation of all I had been through.

But the journey was still a difficult one. I had several different doctor’s appointments over the years checking for arthritis, trying to explain the phantom pain that came and went at will. I had doctor visits for the fatigue weighing me down during college, but could never be explained. I had gallbladder surgery and wondered why it took me such a ridiculously long time to get back on my feet. I fell and hurt my back, which caused quite a conundrum for my doctors. They did X-rays, MRI and CAT scans. Yet, they couldn’t explain why the pain was so severe or why it was still an issue months after my fall.

I finally got the diagnosis two years after the fall. It felt like the end of the journey, but little did I know it was just the beginning.

As I sit here writing, I think about the journey I’m just beginning. I’m waiting for yet another important doctor’s appointment. I’m expecting another chronic illness diagnosis, and I’m scared.

I was recently reading an article about a woman who had fibromyalgia and who was later diagnosed with endometriosis. She listed some of the symptoms that had been dismissed as part of the fibromyalgia until she finally got the diagnosis of endometriosis. As I read about her experiences, I found they sounded all too familiar.

So I did what I’ve been doing for the past several years, I started doing my own research. What are the symptoms of endometriosis? I’ve had a few friends with this diagnosis, and yet I was woefully unaware of the symptoms. Why hadn’t I looked this up years ago when a dear friend in college told me of her health struggles with this?

I found that article after article rang true. So many of the posts sounded like something I could have written. It made me wonder why I had never sought help before? And the truth is, it was because I was afraid.

I hate talking about such private issues, even with my OB-GYN doctor. And the truth is, I’ve always been afraid there was something wrong with me, but I was too scared to find out. I hoped maybe my symptoms were normal, and I got used to it.

Yet, here I am, waiting to discuss my symptoms with my doctor, thinking back over the years I suffered in silence. When I started birth control almost four years ago, I found myself wishing I had spoken up sooner. If only I had told a doctor about all the pain and terrible bleeding, maybe I would have tried this sooner and felt the relief this medicine provided. But I honestly had no idea birth control pills could be used as anything more than contraception. I wish I had spoken up sooner.

And still, I’m afraid to speak up. I’ve written my symptoms out, for fear that in the moment (in the stressful moment of sitting in the waiting room with my doctor), I’ll do what I’ve always done — I’ll gloss over the severity, I’ll downplay the pain, and I’ll try to act as normal as possible. I don’t want yet another doctor to treat me like a hypochondriac, which is why I’ve perfected my “I’m fine” smile.

What if she doesn’t listen? What if she hears my symptoms and they don’t sound severe enough for further investigation? What if she writes them off as just bad periods?

But maybe worse, I worry she will listen. Will that lead to thousands of dollars worth of more tests? I spent about two years of testing trying to get my fibromyalgia diagnosis, am I really prepared for yet another round of tests? More blood work, more ultrasounds, and probably even surgery to find out more?

And what if she does diagnose me? What if I do have endometriosis? I will have yet another illness that can’t be cured; another label that can’t be fixed.

What I have to remember is regardless of a diagnosis, I will still be facing the same symptoms I’ve been fighting for years. And maybe, just maybe, if I speak out I might be able to get some help — and that is worth facing my fears.

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Thinkstock photo by: David de Lossi

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Imgur Post Shows How to Take Care of a Partner With Chronic Illness

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Knowing what your partner wants or needs is tough, but when your partner has a chronic illness anticipating their needs can be even trickier. A trending Imgur post from  shows just how powerful some non-traditionally romantic actions can be.

“I have endometriosis. For those unfamiliar, it means a lot of things, but relevant to this post, it means Mother Nature gives me a whole lot of pain every month. Last night, I ended up crying in bed around 3:00 a.m., because it felt like I was getting stabbed in the stomach,” she wrote in her Imgur post, which has been viewed more than 600,000 times.

Romance is Not Flowers and Chocolate. It’s cleaning a grimy tub.

After her husband came home from work, he helped her with self-care related tasks and chores:

He immediately made me a snack with cheese and crackers and then went to town cleaning our tub. I mean *cleaning*. He scrubbed every jet, took off the filter, and made it sparkle and shine. He filled the tub with muscle relieving bath goodness he’d just bought, set the jets running, and brought me my favorite wine and chocolate after I settled in (along with “just shout out any time you want more wine.”)

As I sit here soaking, he’s now cleaning the kitchen and said he’d prepare dinner after. He got lotion for a massage, a hot pad for my stomach, and said we can watch trashy TV or play Breath of the Wild tonight while I relax in my pajamas.

“I have never, in my life, felt more cherished or protected,” she said commenting on his ability to swoop in and anticipate her needs without her asking.

We asked our community what their spouses or partners do for them during a flare, and what tips they would give others looking to support their partners. Here’s what they had to say: 

“The best support is that she loves me through it. Even when I’m stubborn and won’t accept anything for pain relief, even if I’m irritated and mean, even if I completely shut down… She just keeps loving me. I used to feel so alone during my flares and now I know I’ll never be alone again.” – Kiah P.

“My husband always encourages me to to rest and reminds me not to over do it even when I think I need to do more. My tips for people who have a chronically ill partner are: Be gentle, be encouraging. ask how you can help and most importantly, remember how grateful we are for you even if we forget to say it often enough.” – Hannah G.

“My fiancé helps me a lot… He does a lot of the housework and makes me cups of tea with biscuits. He also [takes] trips to the pharmacy to pickup my meds. When we are out and I start to feel fatigued, in pain or unwell he can always tell even when I keep it to myself. He then calls a taxi and takes me home. He comes with me on every doctors and hospital appointment, even though he hates hospitals. He is super supportive… He’s amazing. My tip to partners of chronically ill or disabled people… Be patient and understanding.” – Sukie M.

“A lot! There are a lot of times that I’ve just gotten comfortable on the couch only to realize I forgot to grab something from the kitchen, so he’ll go grab it for me. Or he’ll massage my legs when they are driving me crazy, microwave heating pads or snuggle when I just need to not be alone!” – Alicia T.

“Having my fiancee as emotional support helps me tremendously. I don’t know what I would do without him. He allows me to cry on his shoulder when all the pain and stress become too much. He’s there when I need to just vent and say how much I hate living with my disease. Then on my good days I’m so thankful that he’s still able to be happy when I’m happy. I’m glad he doesn’t see a good day and think ‘Well when is a bad day gonna be back.’ He cherishes me and I cherish him.” – Ashlee G.

“He just holds my hand. He makes a cup of tea for the both of us and sits beside me and holds me. Even when I am mean … he never asks; he knows I’m in pain.” – Elena K.

“My husband cooks, helps me dress, bathe and walk around when I need to. He will rub my back, make coffee and get me my meds. He does pretty much anything I need him to do.” – Courtney H.

“My spouse knows how groggy and down I get, so he jumps right in to take care of the kids and shoos me to the bedroom so I can get much needed rest. When our flares act up sometimes we don’t even have the energy to take care of ourselves, so having a spouse that is able to remind us to eat when we need, drink and take our medicine is one of the best things we could possibly have.” – Bonnie P.

What would you add? 

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The Women's Health Issues We Shouldn't Be Ashamed to Talk About

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A few years ago I had a co-worker who was a college student working towards becoming a physician’s assistant. She often talked about her desire to work in health care, particularly in a women’s health specialty, as she felt women’s health was understudied, underfunded, and often misunderstood. At the time, I thought she was just another young girl with dreams of grandeur.

It wasn’t that she wanted to pursue women’s health as a specialty, but that she really thought women’s health was an overlooked issue in American culture. I mean, we live in a country with resources like annual breast cancer screenings, a cornucopia of birth control options, and an abundance of OB/GYN specialists. We are fine, obviously.

I was so, so wrong.

I haven’t talked with her in over a year, but I do hope her drive and determination to work in women’s specialties is still being ferociously pursued. She had an understanding of a huge, and painful oversight in our healthcare system, and culture, that I didn’t see: women’s health is misunderstood, grossly overlooked, and rarely addressed positively and proactively. I now see how frustrating, challenging, stigmatized, and lacking in resources health care is for women. Unfortunately, I had to learn this the hard way.

Four years ago I went to my doctor for what I thought was a urinary tract infection (UTI). Basic, common, easily diagnosed by any mid-level provider or primary care doctor, and effectively treated with antibiotics. But it wasn’t a UTI. And so my journey began.

My UTI turned out to be tumors growing through my bladder wall. The tumors were removed, but revealed ulcer like sores in my bladder: a condition called interstitial cystitis (IC). IC is hard to treat, affects mostly women, and is widely misunderstood. Some of the symptoms are urinary frequency, urgency, and chronic bladder/pelvic pain.

After the tumors and IC diagnosis, to lesson the humiliation and bring some humor to the situation, I started referring to my bladder as Bladdy (I know, original). Most people get uncomfortable discussing “bathroom organs,” but somehow sugarcoating it make it acceptable to be out in the open. Friends and family began asking “How is Bladdy doing?” Which is easier to bring up than, “So burning urination every 15 minutes… that’s… fun?” Because of Bladdy’s IC diagnosis, after my surgery I was referred to a urologist specializing in female pelvic disorders. I was told I had intense pelvic floor dysfunction (PFD), which is a general term for pelvic muscles that are struggling. I underwent a year of electro-physical therapy, bladder installations, and Botox injections into my pelvic floor muscles. I was not as open about the PFD diagnosis as I was about Bladdy and her IC. There is not a great way to sugarcoat the humiliation of being probed, prodded, examined, and shocked week after week. So I kept it private, sharing it only with a few female friends and family members.

After a year of no improvement with my pelvic pain, I turned to my primary care doctor for help. She nicely suggested I see an OB/GYN as she suspected more was going on that urological issues. I did my research and asked for a referral to one of the best gynecologists in my area. My new doctor suggested I undergo testing for endometriosis. She pointed out that endometriosis, IC, and PFD often occur together. The surgery proved conclusive of her suspicions: I have endometriosis. In fact, it had spread all the way up to my diaphragm. They removed what they could, and placed an IUD to help prevent regrowth.

Endometriosis is far from rare, according to the US Dept. of Health and Human Services, more than 5 million women in the US have it. Oddly, even in its prevalence, it’s taboo to talk about. The awareness seems higher than other gynecological disorders, as it seems everyone does know someone with endometriosis, but that is where the conversation stops. Unlike my weekly treatments for IC and PFD, my surgery for endometriosis was hard to hide. The recovery of a several-hour-long laparoscopy is a few weeks. So the conversations about my surgery, and subsequent endometriosis diagnosis, was cautiously put out in the open. I found about 50 percent of the time, the response was encouraging and supportive. Unfortunately, the rest of the time, the topic was met with quick subject changes, uncomfortable glances, and/or rude remarks of belittlement:

Periods? Ew.

Heavy bleeding? Gross.

Lots of pain? Take a Midol.

Infertility? Do IVF!

Just, no.

So for a long time I stayed silent. Suffering with the confusion, frustration, and shame in utter solidarity.

Women’s health diseases are like a sorority that nobody wants to be a member of. Unfortunately, the sorority chooses you, and membership is not optional. Your rush period is years of searching for a diagnoses. Your initiation is round after round of humiliating medical treatments. Your bylaws aren’t actually written, because nobody is getting grant money to do research or write them down. Instead of a cool sorority T-shirt or jacket, you wear pain and embarrassment. Your group meetings are a parade of doctor’s appointments and trips to the pharmacy. And you can’t even talk about being in this sorority because many people don’t want to hear about it.

That being said, here is the kicker: there are so many members of this sorority! But because we all keep quiet, most of us don’t even recognize other members in our own social circles. I thought it was just me and my issues that stirred feelings of inadequacy and embarrassment. It’s not… these are their stories (cue “Law & Order” intro music):

My best friend had a baby and experienced bladder prolapse. She confided in me only because we openly talk about Bladdy. She confessed that she won’t discuss it with anyone, except her husband and me, because it makes her feel like an inadequate woman, like other mothers with judge her. She feels guilty, like she did something to cause this.

My 80-year-old grandmother mentioned to me about a year ago that she has urinary incontinence. She refused, despite my constant suggestions, to see a urologist. She thinks it is just the price of getting older.

Another friend of mine recently told me that she and her husband haven’t had sex more than a few times since their 9-month-old was born. Sex is extremely painful, even several months postpartum. My sister-in-law told me she misses a day or two of work a month because her periods are so painful they leave her dizzy and lightheaded. She became anemic and developed gastritis from all the ibuprofen she would take just to get out of bed.

An acquaintance heard from a friend about my Bladdy, and asked me for the name of my urologist. She said she lives in a state of borderline dehydration to avoid peeing because it burns so badly. She said she has been tested for bladder infections and STIs, but the tests keep coming back negative.

And these are just the issues they have the courage to talk about! Like me, I am sure many of them have more issues they aren’t mentioning. Issues that deeply affect everything from to their mobility to their employment to their emotional well being. I think we are all too scared of judgment, too nervous about the responses we will get, and too uneducated to know what is “normal” with our own bodies. It’s heartbreaking.

So what is the point of this saga?

  • My coworker was right, and she is a lovely, spectacular, genius.
  • Women are not being properly educated about health conditions and concerns.
  • Women’s health is so taboo to talk about, even when a woman knows something is wrong, she is still often too scared or embarrassed to address it with her physician.
  • In cases where a woman is brave enough to seek help, finding the correct specialist and correct diagnosis can, sadly, take years.
  • Many women with health issues perceive, whether correctly or incorrectly, that they will be harshly judged for their condition.
  • An open dialog in mainstream media about women’s health, with few exceptions, is nearly nonexistent.

Let’s fix this. (cue Rachel Platten’s “Fight Song”)

  • If you think something is wrong, say something to your doctor. If you don’t feel comfortable speaking up to your doctor, find a new doctor. Health care only works when there is mutual trust between you as a patient, and the person overseeing your health care.
  • Do your own research. Be your own advocate. It took me a long time to be in a position where I felt in control of my health. It is a brave and liberating step, and oh-so worth it.
  • Find support groups, or at least a few friends you can trust, to talk to about your issues. You don’t have to do this alone. Having an empathetic ear to turn to when you have a rough appointment, get a crummy diagnosis, or have a bad day is really nice.
  • If people are uncomfortable talking about female health, remind yourself that is their issue, not a reflection of the validity of your pain, discomfort, or diagnosis. Someone snapping off a quick (and eye-roll-worthy) answer to your health problem is a sign of
    their immaturity, not a cue for you to feel self-conscious.
  • Finally, I encourage all of you to be brave and share your stories. It can be very hard to be vulnerable and share something as inherently private as your health, but we may all feel a little less ashamed, a little less alone, and have a little more influence if we join
    our efforts together and say, “We are not OK, and that is not OK.”

Here are some resources for IC, PFD, and endometriosis:

http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/home/ovc-20251830

http://my.clevelandclinic.org/health/articles/pelvic-floor-dysfunction

http://www.mayoclinic.org/diseases-conditions/endometriosis/home/ovc-20236421

https://www.womenshealth.gov/a-z-topics/endometriosis

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Relationships, Sex, and Endometriosis

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Let’s get started. I won’t make you read a whole paragraph to know what’s wrong with me. I have endometriosis, and it affects almost every aspect of my life: my job, my social life, and my eating habits. Most kids I knew were worried about acne and sex when they hit puberty, but I didn’t have time to worry about those things. I was in too much pain, and until I was about 18, I had no idea why.

I had my first real boyfriend during my senior year of high school, and he was the first person I had sex with. I knew my first time would be painful, but not like this. It took a few tries to really, um, do it. I thought it would get less painful over time, but for some reason it never did.

Whether it was a penis, a finger, or even just the thought of sex, I will always feel pain. It could be some discomfort, or it could be like sandpaper on a dildo. It made it difficult for me to really enjoy sex the way I wanted to, the way someone in a relationship should. We broke up, college came around, I met more guys, and I had more sex. Each time was painful, but I tried to ignore it. That wasn’t the right thing to do. I know that, and yet I still try to ignore it for the sake of a potential future relationship.

But let’s be honest, what kind of relationship can I have where I’m constantly in pain?

It’s not just sex. It’s physical exercise. It’s stress. It’s certain foods. It’s random nights in which my body decides to give up. But I’ve never been so emotionally distraught over my endometriosis for any reason as much as failing in relationships because of it. What guy will want to be with someone that, every so often, can’t walk anymore, can’t eat, can’t have sex for more a certain amount of time, throws up due to pain, faints due to pain, and cries for reasons he will never understand?

It’s not just his decision, though. I purposely distance myself in fear of becoming a burden. I don’t want to finally feel safe and comfortable with someone, only to be too much work for someone that is not worth it. I’m young, I’m 22 years old. I’m not looking for a husband, but at the same time, I’m getting tired of the same cycle of not wanting to get attached… Not wanting to be lonely anymore, finding a connection with someone, and ending with disappointment.

Still, with all of this going on, I am extremely grateful. Though my friends might not completely understand what’s happening in my body, they are supportive. They are loving. They are my strength and my hope. How can I repay them for staying in with me while everyone else is out? For taking me to the hospital when the pain is too great and I pass out? For holding my hair when my cramps force me to throw up? For carrying me up and down stairs after surgery? For putting up with all the phone calls and text messages from me complaining? I will never know. I want to know.

I’m going through treatments. I have medication. This isn’t life-threatening, but it is life-altering. I can’t go out to dinner without wondering if my endometriosis will act up. I can’t go to the bathroom without wondering if I’ll end up passed out on the floor. I can’t have sex without wondering if I’ll end up in the hospital shortly after. I can’t be in a relationship without wondering how he’ll feel about the struggle it will be to have children.

Hopefully, once these treatments start kicking in, life will be a little more manageable. Maybe I’ll feel less insignificant. Maybe I’ll find a guy I can hang out with or go out for some drinks with a friend and not worry about these things. I can just enjoy the journey. It’ll happen.

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Thinkstick Image By: Constantinis

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We face disability, disease and mental illness together.