Three years ago my doctor officially confirmed that I have Endometriosis.

For those of you who may not know, Endometriosis, or Endo for short, is a condition that affects women, which can cause many different symptoms such as chronic pain. Though there are a lot of potential treatments, there is no actual cure and for many, it is a lifelong affliction.

If you want to get really technical about what Endo actually is: You know how when you get your period it’s not actually blood that’s coming out, it only looks like it? That you’re really shedding the inner lining and tissue of your uterus because there’s no baby in there? Well, Endo happens when that tissue, isn’t just growing inside your uterus like it’s supposed to. It can grow all sorts of places in the body like the outside of the uterus, the bladder, the stomach, the lungs, etc.

This is why there are only treatments, but no cure. The truth is we don’t know enough about Endo and its effects are definitely not a “one-size-fits-all” type of result. Suffice to say, once the tissue starts growing on the wrong organs, it can be removed but it’s very difficult to get it to not grow again.

I’ve learned a lot through my diagnosis and treatment, and I’m certain the lessons will continue. One of the most shocking things I’ve learned is that at least 1 in 10 women will be diagnosed with Endo. Yet I continue to be astounded at how little we as a society talk about this condition.

Therefore, in honor of Endometriosis Awareness Month, I’ve decided to share with you my experience and the lessons I’ve learned. I’m going to cut through all of our societal manners and discomfort on the topic and tell you exactly what happened to me and what I’ve learned from it.

Don’t get me wrong, I don’t have all the answers. My experience, may not sound like yours and certainly doesn’t represent every woman’s journey with Endo. I’m going to tell you my story, because if even one woman reads this, hears something familiar, and it results in her diagnosis and treatment – that’s all we need. We’ll be one step closer to understanding this debilitating condition and hopefully that much closer to a cure.

So please excuse the TMI, the taboo topics, and my lengthy explanations. I can only tell you what I’ve been through, and the lessons I’ve learned, the only way I know how: Honestly and without filters.

# 1 No One Knows Your Body Better Than You

My journey starts, like so many others I’m sure, with a symptom. In my case, bleeding. A lot.

Now don’t get me wrong, I had always had heavy, painful periods ever since my first when I was nine years old, and it wasn’t unheard of for me to bleed more than ten days. I’d always considered my excessive bleeding and pain “normal” though. After all isn’t that what we’re taught growing up? “Periods suck and are painful! You just have to deal with it.”

I’m sorry to say I remember vividly through puberty rolling my eyes at other girls keeled over during lunch break, in agony from their menstrual cramps. I remember thinking, “Suck it up, we’re women. You think I’m not in pain too? Take an Advil and move on already.”

Obviously, this is a toxic mindset. The point is from age nine I believed my excessive pain and bleeding was par for the course.

In this case, the bleeding wasn’t stopping at all and my flow had run uninterrupted for 30+ days. In fact, it was quickly approaching 60 straight days of tampon worthy bleeding. Something was up, so I had to consult a doctor.

At this time, I was 22 years old and sans medical insurance. This meant that instead of utilizing an OBGYN or a General Practitioner I frequented my local Women’s Clinic, Planned Parenthood.

They were kind, respectful, and listened to my concerns. Best of all, they were affordable on my meager salary.

The technician I saw wasn’t too alarmed by my symptoms and prescribed me a new birth control pill. “Probably just need to adjust your hormone levels.” She’d explained.

Simple as that, I thought and left with my new prescription.

Of course, the bleeding didn’t stop. What’s worse, new symptoms started forming. The pain I had been used to all my life began worsening. My back, gut, and stomach all seemed incapacitated. Sometimes I’d experience intense pain and then I would find myself having to run to the restroom with a sudden bout of diarrhea. I started feeling nausea from the hormones and multiple times I couldn’t keep down my breakfast. I was also moodier and lethargic, to the point that getting out of bed seemed like a chore.

It wasn’t working.

The trouble when you’re prescribed a new hormone is: you’re not supposed to call it quits right away. You have to give it two months minimum and most doctors prefer three. They usually cite something about your body adjusting to the change – annoying right?

So that was life for a while, bleeding and increased discomfort. I’d set up another appointment at the clinic, but I’d get the same response from a new technician. “Nothing to be alarmed about. All sounds normal. Probably need to adjust your hormones, here’s another pill.”

Back and forth I went at least three or four times. After a while, the first lesson started to dawn on me.

Doctors are great. We are lucky to have access to modern medicine and I’m lucky to have had my doctors in my life. At the end of the day though, doctors do not know my body better than I do.

Instead, doctors know patterns based on their excessive studying, research, and experience. Doctors know the best way to treat what you most likely have, but they do not have a simple answer card for each individual person. In the case of most people, yes perhaps switching up your birth control hormones would solve the problem. However, when you have Endometriosis you are not most people.

Also, it’s important to note that many doctors believe Endo cannot take effect until a woman is in her 30s or after she’s had children. Whereas other doctors have proven that Endo can be diagnosed as early as age 16. Remember what I said? It’s not a “one-size-fits-all” type of condition.

Suffice to say when a young girl in her early 20s came into the clinic complaining about typical hormone symptoms, the clinic had every reason not to think a larger issue was at play.

However, I knew that this was not normal for me.

I had no idea what the solution was, but I did know two things:

1. This was a bigger problem than I originally realized.
2. I would need help from a dedicated doctor to solve this, rather than the guess-em games I was currently playing.

Even though I’m an advocate for local women’s clinics and all they offer to their communities, I was on a search for answers beyond their reach. I decided to suck it up and find a dedicated OBGYN. Higher out of pocket fees be damned.

 

#2 You Have to Trust Yourself

I found a local OBGYN in my city with great reviews who wasn’t too pricey. I set to work filling in the first doctor I met there, Dr. Julie, on my backstory, awaiting her magical next step that could finally free me from my hormonal spiral. Dr. Julie was kind, a good listener, attentive, sharp – everything I pictured my doctor should be.

Her suggestion? A new birth control pill.

I tried to be open-minded – after all, she needed to rule out the basics. She was only just starting on this journey with me. Perhaps this time would be different?

She assured me, yes, this would be different.

Instead of a typical birth control pill which incorporated a placebo for the week of your period, Dr. Julie suggested eliminating my period altogether. No placebo week, just straight hormones every day until eventually, my period stopped altogether.

I admitted I hadn’t tried it. Maybe this would help. The method sounded more intense than typical birth control and maybe that’s what I needed to knock out the symptoms. Maybe this would work.

It didn’t.

My bleeding, pain, bowel movements, moods – everything persisted. In fact, they brought along new symptoms.

I had never had breakouts as a teenager and suddenly I had developed adult acne. My hair started falling out. I had extreme paranoia, and it was somewhere in the midst of all of this that I experienced my first ever panic attack. A feeling I do not wish upon anyone, and I truly feel for you if you’ve experienced it.

I no longer felt like myself in my own skin, I was desperate to get out and away from the hormonal hell clouding my mind. I started to feel genuinely crazy and like the chaos would never end.

I went back to Dr. Julie who was sympathetic and offered that we stop the pill and try another method of birth control. Perhaps the depo shot or nuvaring? For the first time in my life, I told my doctor “no”.

I felt crazy, yes, but I also knew that I was the only one that I could trust. I listened to myself and knew that I had been through far too much in the last year. I needed to detox from everything, start fresh, and really understand what was wrong with my body. I would not take any more hormones for at least three months and let my body get back to zero. Then maybe, we could figure out the next steps.

While this may sound like a waste of time to some people, I’m so very glad I decided to trust myself and stop the guessing games. In the time I took to detox several symptoms improved – my hair stopped falling out, my acne started to clear, the extreme paranoia lessened, my nausea ended. Still, the bleeding persisted, the pain continued, and the bowel movements oddly remained.

Detoxing didn’t solve my problems, but because I’d opted to trust myself at least I could narrow down what my real symptoms were and what had been caused by medication.

I went back to my doctor, more confident in myself and ready to start game planning our next move.

Dr. Julie and I went back and forth for a bit. She still wanted me to try different forms of hormones and birth control – I wasn’t willing to try most of them.

Nuvaring – I’d tried it right when it was first released and found it to be extremely uncomfortable.

Patch – I knew women who had become pregnant on it.

Injection or Depo Shot – I was firmly against because at least when the hormones had turned on me previously, I could stop the pills. If the same thing happened again I’d be stuck with the implant or the depo until the hormones ran out for my next injection.

Based on my own research of my symptoms I suggested:

Ablation – Dr. Julie rejected because I was only 24, unmarried with no kids, and sometimes the procedure can result in infertility.

Tying or Removing my Fallopian Tubes – Again rejected due to my age and the fact that this would make me infertile.

Hysterectomy – Different procedure, the same objection from my doctor.

We were at a standstill. Refusing to give into Dr. Julie’s ideas of hormone after hormone and my ideas dismissed due to my age, I opted to trust myself yet again. I asked to see the head doctor at the practice and was ready for a third opinion.

 

#3 You Can Be Brave For Yourself

I will always love Dr. Kadan and be grateful for my time with her. I remember liking her immediately.

She listened to my struggles and didn’t dismiss my concerns about hormones. She wasn’t against my ideas of ablation, removal of tubes or even hysterectomy. However, she warned, I should know that the follow-up treatment of those procedures is… hormones.

I felt deflated. I’d been off hormones for almost 6 months and still my core symptoms persisted. I was completely against going back to hormones after what I’d experienced, but it seemed as though every path led there. I was stuck.

Dr. Kadan then suggested an IUD, a small device that is placed within the uterus. It can prevent pregnancy and administer a small number of hormones directly to the uterus. I was reluctant at first, afraid the hormones could backfire.

Also, according to my research, the procedure would be minimal but would require an ultrasound machine and, could be painful. However, Dr. Kadan was confident that this could be my answer, and I opted to trust her and be brave.

The procedure did not go well. I’ll touch on it later, but in short, the IUD was not able to be placed while I was awake and I experienced pain more intense than anything previously. I got dressed and put on my coat, ready to face the cold world without my solution again. I felt defeated, and I could tell my doctor did too.

As I slumped out of the office with my boyfriend keeping me steady Dr. Kadan stopped me to suggest one more idea.

We could still try the IUD, but instead, I’d have to be in surgery and under anesthesia for the procedure. Some women need it that way and it could still solve my problems. “Plus,” she added picking up on my hesitation, “I could also do a laparoscopy.”

A laparoscopy is when they make a small incision in your abdomen during surgery and stick a camera in you to look around. Dr. Kadan argued I’d be unconscious anyway for the IUD and then at least she could look around and see if she could spot the cause of my symptoms.

I told her I’d think about it. She nodded and as I left she handed me brochures of potential causes for my symptoms. I went home tired, emotional, and in pain. Then I opened the brochures and found one that finally introduced me to the condition Endometriosis.

I read the brochure front and back multiple times in disbelief. Then I hopped online and researched more. I couldn’t understand how no one had mentioned this condition as a possibility before. The symptoms fit almost perfectly!

History of heavy painful periods. Constantly bleeding. The bowel movements weren’t mentioned though which was off-putting. I was also still on the young side of a potential diagnosis. I was frustrated when I learned, the common treatment is hormone therapy. However, the #1 treatment is with an IUD. The final kicker, the only way to receive a formal diagnosis of Endometriosis is with laparoscopic surgery.

This was it! This had to be it! I was determined to get the surgery and know once and for all if Endo was the cause of my pain and heartache. I would get my answer and my treatment in one day, with the IUD being placed. I went and purchased the only insurance I could afford. I prepared myself and my family. Then I scheduled the surgery.

The day of my surgery will go down as one of the most terrifying in my life.

I was scared of the surgery, sure. I had never had serious surgery before and my mother’s heart had once stopped on the operating table due to an unknown allergy to anesthesia. The doctors seemed confident I wasn’t allergic but still, scary.

The true fear that chilled me to my core had been building within me the weeks leading up to the surgery date. The familiar fear that had grown back during my hormone hell.

What if, I was crazy? What if I came out of surgery and not only did they not find Endometriosis, but they found nothing? What if nothing was wrong with me? What if I really was a silly girl making a big deal about nothing? What if I’d never find the answers? What if this pain, unknowing, and going crazy would never end?

It was terrifying to be on the brink of answers, and wonder: what if there is no answer?

This is when I found my bravery.

Of course, I knew I could be brave when the time called. I could be brave for my sisters and my family. I could be brave for my friends and even strangers under the right conditions. I could be brave at work facing clients, co-workers or my bosses. At that moment though the only one who needed me to be brave, was me.

I had to face the fear of the unknown, the fear that all my pain would be for nothing. I owed it to myself to be brave and try and learn what was wrong with me.

I clung to the lessons I had learned thus far. I knew something was wrong with my body, even if no one else did. I trusted myself and my belief that Endometriosis was the cause of my pain, and this next step would help me solve it. I climbed onto the surgery table, watched them inject me with anesthesia, decided to be brave for myself, and closed my eyes.

When I woke up my boyfriend was sitting across from me. I asked the only thing that had been on my mind for weeks.

“Did they find Endometriosis?”

He nodded, “Yes.”

Then I cried. Not for sorrow over my diagnosis or pain from surgery, but from pure relief. I had been brave. I had been right. I had my answer.

I have Endometriosis.

 

#4 Your Symptoms Will Change

I learned a lot after the surgery.

My Endo had been growing on the outside of my uterus and on my bladder. Hence the unexplained bowel movements. The doctor removed the Endo during surgery, but now that it was confirmed that the tissue had grown on other organs, even a hysterectomy in my future would not prevent the tissue from regrowing. My diagnosis was for life.

I learned that my body is apparently very odd. So odd in fact that despite being under anesthesia and cut open, the doctor was still unable to place the IUD within me. The best explanation I could receive was that my uterus was on its side, but also positioned quite far back in my body. Suddenly all the back pain I’d experienced with my bleeding made more sense.

The verdict had been, there was no safe way to place an IUD in and out of me unless of course, I felt like getting invasive surgery every year. I had received my diagnosis and answer, but not my treatment.

This put me right back to square one. My doctor and I considered my treatment options again: removal of tubes, hysterectomy, etc. However, since the follow-up treatment for those procedures was hormones, and since I now knew the tissue would inevitably grow on my other organs anyway, I reserved myself to skip another surgery for the time. In the end, I chose to try another hormone pill.

I’m sure that sounds ridiculous. Hadn’t I been the one firmly against taking hormones? Hadn’t I been through enough? Didn’t I just drive myself into surgery technically after avoiding taking a pill?

The only explanation I can give is that my mindset changed after surgery.

For one, I was relieved just to have a diagnosis and answer. For two, I also understood that hormones, no matter what, would be a part of my treatment. So I reserved myself to try wrapping my head around taking a pill again. After all, what else could I lose? Hadn’t I already been through the worst of it?

I can’t help but smile at how naive I still was.

On the one hand, my bleeding had finally stopped. However, that was due to the removal of the Endo tissues, not the pill. Same for my bowel movements. No influx of acne, no paranoia. My hair remained intact. Even the pain in my abdomen seemed better. However, that’s because my pain changed.

I know I’ve been vague about the pain to this point. The reason echos back to what I previously said, this is not a “one-size-fits-all”  condition. That includes the pain, which varies depending on the woman and her body. Obviously, the places the Endo tissue grow are a factor, but there are many other elements from hormones, diet, pre-existing conditions, etc.

There are patterns of typical pain which affect many with Endo, such as back pain and pain in the uterus of course. General abdominal pain can be common. One of the leading pain symptoms is vaginal.

When I say vaginal pain, I mean the most intense pain you’ve ever felt in your vagina (excluding childbirth as I cannot attest) constantly. For those who haven’t felt it, imagine a combination of the pain you felt when you lost your virginity, a burning yeast infection, and long distance cycling for the first time. Even that doesn’t give it justice. Your muscles and skin inside and out feel raw, burn, and spasm. I’d never felt anything similar to it before, but suffice to say it was a lot to deal with.

I couldn’t sit down without being in pain, I couldn’t walk. I couldn’t wear certain underwear without discomfort. I couldn’t utilize tampons and was forced to wear pads – an abomination of feminine products in my opinion – which suddenly I was cursed to rely on. Still, even those hurt.

The absolute worst part, for me, was that I couldn’t have sex with my boyfriend.

Maybe it’s surprising to hear that I maintained much of a sex life through my Endo journey. I’m sure many would have given up sooner. However, I’m lucky that my boyfriend was kind, considerate, and understanding. He’d long overcome unease at my symptoms and constant bleeding. Together we had mastered the art of shower sex, a perfectly placed towel, and stockpiling an abundance of Bed, Bath & Beyond credit for regular purchases of new sheets.

The point is, we had salvaged our intimacy through everything and now suddenly I couldn’t be close to him anymore. He handled it like a champ, as always, forever supportive and optimistic. I was devastated and multiple nights after I failed to be able to make love with him, I would scream and cry in frustration.

I no longer felt like I could overcome this. With the loss of my femininity, sensualism, and physical bond with my partner this felt like the worst, most unbearable symptom Endo had ever cost me. Once again, it was time to turn to my doctor and ask for help.

 

#5 Your Journey Will Never Be Over

I returned back to my doctor, desperate for solutions and positive she could provide them. At this point, Dr. Kadan was my hero, my savior. She’d been the one to diagnose me, to never dismiss my ideas. She had celebrated with me when we had my answer. If anyone could understand and help me solve this, it would be her.

I sobbed my symptoms on the exam room bench but I was surprised when my hero examined me robotically. It was odd, I could feel something was off. She confirmed that I had no infections, no additional potential cause. She listened to me but offered no solutions other than potentially pain medication or utilizing a sitz-bath – commonly used for those with hemorrhoid pain or after childbirth (and nothing less than mortifying to purchase at the local pharmacy).

I was shocked as I left. I couldn’t understand it. Where had my doctor gone? Where were the solutions? Where were the options?

Then it hit me, the reason my doctor had looked at me so strangely, why the exam had felt so robotic. In my doctor’s eyes, there was nothing left to discuss. After all, I had my answer. I had Endo. What more did I need from her? When I came in complaining about typical Endo pain, my doctor’s internal response that she was biting back was, “Well yeah, what did you expect? You have Endo. Get used to it. Take a pain pill. Move on.”

This realization hurt me deeply. She was my doctor. The one who had been there for me. Who had given me the answers I needed. I had put my life in her hands on the operating table. I had cried in her exam room multiple times. I respected her and thought she respected me. Now, this? You have Endo. The pain will never stop. Take a pill.

Once more I felt defeated, but I wasn’t willing to give up. Never underestimate a woman who values her sex life.

At this point, I was 26 years old and my life circumstances had changed. I had developed my job into a career and now was working for a company that could offer me real benefits. My younger sister had also burst into the Women’s Health career field and was working for an OBGYN office. I shared with my sister my problems and she suggested I come in for a consultation.

In the past, I would have scoffed at the idea. I knew the OBGYN my sister worked for was on the “nicer” part of town and doubted I could afford the payments. Now that I had reasonable benefits from my own career, I figured it was worth a shot.

It turns out, heartbroken as I was to leave Dr. Kadan – visiting Dr. Harold was the best decision I could have made. She was warm, compassionate, and spent over an hour with me on my first visit trying to understand my journey and what I was struggling with. She nodded along at the familiar Endo symptoms and was sympathetic to my roadblocks.

I learned a valuable lesson the day I opted for my fourth doctor’s opinion. For the longest time, I had been focused on the “why” behind my symptoms. I was determined to get my answers because I thought answers would point me in the direction of how to solve my problem.

When you have Endometriosis, getting your answer is only the first part of the battle.

I will always treasure my time with Dr. Kadan. She helped me be strong and find a path to my answers. When that part of my journey concluded she didn’t know how to be there for me to help find my treatment.

Yes, I have Endometriosis for life. My symptoms will continue to change as I age. Eventually, I’ll likely still need a hysterectomy. I’ll likely need more surgeries to remove more Endo tissue, but they recommend no more than every two years as scar tissue will start to build up.

Yes, this is my reality and perhaps I should just take a pain pill and deal with it. That wasn’t good enough for me though. I needed a doctor who was willing to discuss treatment to improve my quality of life. This journey was technically only just beginning, and I would be damned if I would accept the vaginal pain forever.

Dr. Harold understood, she agreed, and she helped. It wasn’t time for answers anymore, it was time for treatment. Together we fashioned a strict regimen of hormones, vitamins, and physical therapy. As of today, this treatment has helped give me peace for the last couple of years. At least, enough so that my boyfriend and I could finally get our sex life back on track.

However, I don’t kid myself, I know this journey is far from over. What works for me now may not work in a year or two.

Already my uninterrupted bleeding has started again and the painful bowel movements and abdomen are picking up as if they’d never left. However, I’m extremely grateful that the vitamins and physical therapy help keep the vaginal discomfort away. Still, I don’t know how long I can make this last.

I want to put off another surgery as long as possible, so I’m trying to figure out new ways to change my diet and monitor my acidity levels. I’m researching the effects of acupuncture and looking into a custom pelvic pain specialist.

The point is, I need to be prepared for my treatment to change with me, and it’s important to have a doctor I’m comfortable with who’s willing to discuss options. Because this journey is never going to end.

 

#6 Your Diagnosis Will Change You

There is another symptom of Endometriosis that I’ve danced around thus far, and the time has come to face it head-on.

Endometriosis can cause infertility.

As I type that sentence I can actually hear the thousands of voices objecting to that statistic.

“Infertility doesn’t mean no chance at all!”

“There are plenty of steps you can take to still have a baby!”

“Fertility drugs!”

“That’s not true – I had a friend who was told she had Endo and couldn’t have kids and then she had three babies!”

“Some doctors even say having a baby will cure your endo!”

Yes, I know. I’ve heard it all before. Thank you for your optimism and I do not disagree with you. I will politely remind you what I said at the beginning of all of this. Say it with me this time. Endometriosis is not a “one-size-fits-all” condition.

I will also say that due to the miracles of modern medicine and the many options out there available to couples who struggle with infertility, doctors are more reluctant than ever to actually tell someone, “You cannot have children.”

Dr. Kadan was no different. She never said I cannot have children. What she did share with me allowed me to read the writing on the wall.

I have Endometriosis which can cause infertility so at the very least, I’d likely have trouble conceiving.

My body is positioned strangely, so much so that a simple IUD placement was not a viable option even under anesthesia.

So yes, maybe there is a possibility that I could somehow get pregnant. However, could I carry that pregnancy to full term? Safely? The odds are not good.

Again, I can hear the voices objecting.

“You still have options!”

“Surrogacy!”

“Adoption!”

“Life um.. Finds a way!”

I’m going to respectfully put up my hands to stop you and just say, I never wanted to have kids.

Yes, I’m one of those. The thought had crossed my mind, sure. However, I grew up the oldest sibling in my family and was responsible for three younger siblings. Two of my sisters have children and I try to be an involved auntie. Motherhood wasn’t a role calling to me. Long before my diagnosis, my boyfriend and I had already discussed that children were not in our future together.

So, no big deal right? My diagnosis shouldn’t have made me bat an eye. After all, the only thing that had really changed was instead of saying, “I don’t plan to have children.” I was more definitive with, “I will not be having children.”

Yet, after the diagnosis, I could not help but keep crying. It would come unexpectedly. At night. The morning. Driving to and from work. Watching movies and shows. At the doctor, around family, at home. I would suddenly start to cry. I had vivid nightmares so some days, I even woke up crying, feeling a loss I couldn’t describe. I couldn’t understand. Hadn’t I known what I wanted all along? Had I really been this unaware of my true feelings?

For a while, I thought maybe it’s just a case of, “Wanting kids because you can’t have them.” Then I’d sit down and think about it more, really try to analyze my heartbreak. Still, it wasn’t quite right. It wasn’t phantom children haunting me. It was something else. It wasn’t until one long road trip that I finally realized it.

Before my diagnosis, I prided myself on the fact that I was the first woman in at least three generations of my family to cross the ocean and visit Europe. I was the first woman in at least three generations who was not married or pregnant by age 20. I was very proud of the woman I was shaping myself to be. I felt confident I was forging a different path for my family and that I could do something else with my life. I felt that I was breaking a pattern.

But after my diagnosis, it turned out, that maybe I hadn’t been in control of breaking the pattern. Maybe the Endo had prevented those patterns befalling my life. So you see, it wasn’t that Endo had taken away my ability to have children. It was that Endo had taken away my ability to choose whether to have children.

I was not mourning the babies I would never have. I was mourning myself, and a part of my identity that I had built up and lost. How could I take credit for my decisions, when it turned out I had a condition that had removed the options altogether? I had to come to terms with what that meant about me and how I felt about it.

Some who read this may not understand. It honestly might pale in comparison to those women who are struggling every day to try and conceive a child while they cope with Endo. Who fight every day and are hurt when people tell them, “The cure to your Endo is to have a baby.” My heart feels for those women, and I will hope all that optimism from before ends up correct and they finally get their babies.

Perhaps I sound selfish, mourning myself. Still, I’d like to think there are other women out there, who could understand that there is a pain in realizing a condition changes the way you identify yourself. It’s yet another harsh lesson, from the Endo experience, that many women have to cope with.

 

#7 You Are Stronger Than You Ever Knew

I’m going to take us back for a moment, to one of my most vivid memories from my Endo journey. One that I will always cling to, to remind myself of this most important lesson. The day Dr. Kadan tried to place an IUD in me in her office, before my diagnosis and surgery.

My boyfriend accompanied me that day to the doctor. We’d both taken the day off for the procedure. We didn’t expect anything unusual but the forums online had advised that sometimes you can feel cramps after the fact and it’s best to rest.

So there we were in the tiny procedure room, I’m spread eagle on the table wrapped in doctor-office-paper-robes while he sat sweetly by my head. Suddenly not only did my doctor appear, but she brought along a nurse practitioner, an ultrasound technician, and (with my permission) three students in training for their medical license.

We all crammed into this tiny, hot room with my vagina for everyone to take in, and began the process. It starts to become a blur shortly after that because things began spiraling quickly.

The doctor opening up my vagina with clamps to widen me for her tools. The nurse, technician, and doctor arguing about where my uterus actually was. Tool after tool going in and out, covered in blood that I tried not to notice because I was always bleeding. The doctors trying to move my uterus and cervix towards them by pressing on my abdomen or pulling on it with what can only be described as tongs. The students were cringing, the three continued to argue, eventually, my boyfriend ducked out of the room light-headed from the experience.

Through all of it, the pain intensified beyond what I’d ever felt but I held back any tears. I breathed in and out trying to focus on getting through the procedure. I was determined to finish and positive that if I cried the doctor might stop. So I focused on breathing and pushing aside the pain spasming through my body.

After some time, they gave up, released my uterus and vagina, and I could close my legs again. The tears threatened, from the painful cramps now engulfing me but also the extreme disappointment. Still, I swallowed them back.

That’s when the apologies and commending began.

“We’re so sorry!” The doctor, nurse, and technician exclaimed. “It’s never been like that before! We’re so sorry we hurt you so much!”

The students were gasping, “I’d never seen anything like that! How could you take that pain?”

“The pain,” they all exclaimed. “We’re so sorry about the pain. You’re so strong for taking the pain. We would have been crying immediately.”

I was shocked. All I could think was: Oh! So I could have been crying the whole time. Good to know.

This led me to the most important lesson of all. The one that I want to share with every woman struggling with her Endo journey.

I had no idea how high I could let my pain tolerance stretch. I had no idea how determined I could be. I had no idea how strong I really was until that moment.

Obviously, it was wrong of me in the past when I would scoff at other girls cringing in pain. It’s that kind of toxic mindset that perpetuates doctors to prescribe pain pills and write off the worst symptoms of Endo. Still, I did have one thing right even back then, and it’s led to my favorite Endo mantra:

The pain makes me stronger.

Not everyone can handle the mental and physical pain that Endo doles out, yet every day the world is filled with Endo Warrior Women who keep pushing forward, stronger and facing another day in silence. Since my diagnosis, I’ve had the privilege to meet some incredible women through support groups, online forums, and just plain friends. Endo Sisters is what we call ourselves.

Every woman’s experience is different, but the stories they’ve shared of their endurance and strength is mind-boggling. Women who struggle every day with their various pain and the constant pushback they receive from society because so little is known about Endo. Girls, never diagnosed previously, who are rushed to the emergency room because they ignored their pain so long that their uterus eventually collapsed from the Endo tissue build up.

The beauty and resilience of these women is inspiring beyond what I’ve ever seen. They are Endo Strong.

So I have to take a moment to say, after everything I’ve been through, I am one of the lucky ones.

I am 29 years old and have been on my Endo journey for a little less than seven years. Of those seven, it took me three and a half years to get my diagnosis. The average time it takes a woman to receive her Endo diagnosis is eight years.

Perhaps that still sounds surprising to you, but again I can’t stress enough how lucky I am.

I am lucky that I found the strength in myself to push my doctors, especially at such a young age. I’m lucky that I had the will to ask for more opinions. I’m lucky I was even in a position to be able to ask for another opinion. I’m lucky that when it was time for surgery I was brave enough to try. I’m lucky that when that insurance I bought to cover that surgery – didn’t pay a dime – I could ignore those collection bills as long as I did, because I’m lucky enough to have worked in collections once and learned just how far I could push my debt.

I’m lucky that my career grew so I could earn benefits and see a doctor I never would have considered before. I’m lucky she and my sister could suggest other treatments. I’m lucky that I’ve had amazing employers who always supported me when I needed time off for doctor visits. I’m lucky that I work remotely now so on my really bad pain days, I can cry in peace without it affecting my job.

I’m lucky that I have the support and love of my boyfriend, willing to try whatever it took. I’m lucky that on the week he proposed to me, and became my fiancé, he was supportive and kind while my sex drive dwindled as I went through the worst Endo cramps I’d felt in six months.

I’m lucky to have my family and friends who were willing to learn about my condition and not belittle me. I’m lucky to have had the doctors I have in my life, even if I didn’t stay with them. I’m lucky to have met all my Endo Sisters and learned what options there are out there.

If even one of those things that make me so, so lucky had been different. If my circumstances had changed even slightly it’s easy to imagine how the years chasing your diagnosis and treatment can stack up. With all the push back and toxic rhetoric, it’s no wonder it takes so long to finally earn your diagnosis.

Once again, 1 in 10 women will be diagnosed with Endometriosis – but that’s only that we know of. Imagine how many women are not as lucky as me, who may still not even know they have Endometriosis.

These women exist. They are struggling every day to cope with their symptoms and fighting for better treatments and a diagnosis. They are suffering, in silence.

Which is why I urge you, if anything sounds familiar from my journey, if you think there’s a chance that you’re misdiagnosed or not receiving proper treatment – please see a doctor. Get a second opinion. A third, fourth or fifth. Educate yourself. Push yourself.

We need more women to start standing up and demanding their diagnosis with proper treatment. If more of us stand together demanding a better quality of life – we have an increased chance at learning more about this condition, re-educating society about its effects, and even maybe finding a cure.

I’m telling you, that you are not alone. You are potentially one of my Endo Sisters and you are stronger than you know. The pain makes you stronger. Please push for your answer and stand with us, as you are, Endo Strong.