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Sarah’s Endo Chronicles

ENDO CHRONICLES
Sarah C. Withers
IG: @scwithers_nyc

 

As a college freshman, during a routine cleaning with my dentist, I began experiencing

pain so severe, I couldn’t even finish the appointment. Except the pain wasn’t in my

mouth–it was pain in my abdomen. This was my first ever excruciating–and literally,

gut-wrenching–period. By the time I fled the dentist’s office and got back to my dorm

I was nauseous, bleeding heavily and having intestinal pain like I’d never experienced

before. I remember thinking it was the first time in my life I’d been sick without my

Mom there to turn to. I felt helpless.

The following semester, in addition to my menstrual complications, I began

experiencing prolonged bouts of constipation with diarrhea, and UTIs so frequent I no

longer felt them coming on, allowing them to progress to bladder or kidney infections.

The second I felt that achy discomfort in my lower back, I knew unstoppable vomiting

and dehydration would soon follow, along with a trip to the hospital.

When I was 22 living with my new college boyfriend (now husband), despite all the

doctors visits and hospital stays, no clear diagnosis emerged and one day the

infections inexplicably stopped. No sooner did this end and I began suffering extreme

fatigue, loss of hair and my period. I remember, out shopping one day when after eight

months without a period, it came back with a vengeance. I was jolted with a stabbing

sensation in my gut, accompanied by the same dizziness, pain and nausea I had

experienced that day in the dentist’s office. Insides wrenching, I dropped everything,

ran to my car and drove home slumped over the wheel. I spent the next two hours in bed

shaking in unfathomable pain with cramps, sweats and chills. When it didn’t stop, my

boyfriend got me to the ER where they concluded that my exercise habits and intake of

soy products had resulted in low body fat and hormone levels causing my period to

stop. It seemed reasonable and I assumed it was a fluke.

Following college graduation, I moved to Las Vegas and while there hadn’t been another

extreme incident since my period returned, I was now battling a nagging, shooting,

pelvic pain that eventually resulted in another ER visit. After being bombarded with

embarrassing questions regarding my sexual activities and partners, I was diagnosed

with Pelvic Inflammatory Disease and informed that my reproductive-related issues

would inevitably end in an early hysterectomy, so if having children was part of my

long-term plan, I needed to act relatively quickly! I was 23, confused, terrified and

felt somehow responsible for my circumstances. I was given a shot in the arm and a cup

of pills that dulled the pain, but didn’t fix the issue.

In the years to come, this same approach would be the solution for many of the

symptoms I would eventually suffer. Nothing was ever corrected, just masked with

another temporary Band-Aid, usually in the form of pills. Looking back on those early

years when my body was so desperately giving me signals something was wrong, I assumed

that by going to the doctor I was being responsible and doing all I could, but

trusting those doctors enough to accept their word as my only truth turned out to be

my biggest mistake.

When I was 23, my Pelvic Inflammatory symptoms had subsided while my gastro and

menstrual issues had advanced significantly. At that time, I left Vegas for NYC and it

didn’t take long before all the old clichés about life in the big city proved true. I

took on three jobs to support myself, including waitressing, and there were many a

shift I could be found curled up in a booth at the back of the restaurant with a

bottle of boiling water on my stomach just praying for the cramps to subside before

the next service began. When you’re on your own living paycheck to paycheck, how can

you ask your boss for time off when your only excuse is your period? It didn’t sound

like a big deal, but what was going on inside me was not normal.

Years later my boyfriend moved to NYC and not long after we were engaged. My condition

had progressed and periods filled with pain, sweats, fever, chills, vomiting and

fainting were no longer the exception, they were my norm. My gastro issues had

escalated to five months of constipation, accompanied by severe food sensitivities and

painful bloating that no amount of coffee, prunes, Metamucil or fiber under the sun

could fix. These swings were predictably followed by a full month of chronic diarrhea

that left me weak, fatigued and unable to go anywhere without a restroom. When in a

restaurant, the time I spent making alterations to my meal just to ensure I wouldn’t

get sick turned something as simple as going to dinner into a source of anxiety. 

My condition appeared progressive and permanent. I began questioning if all my symptoms —

menstrual and gastrointestinal – were somehow connected and I was chasing the wrong

lead all this time. When I eventually traded the restaurant industry for a corporate

office job, with it, I inherited benefits that finally allowed me access to better

specialists. With my symptoms now severe enough that they were truly compromising my

quality of life—and my partner’s too—I aggressively began seeking an answer as to

whether all of these symptoms were somehow connected. No matter how many different

doctors I had to see, I was going to find one that could help me.

In my quest for answers, I began seeing a gastroenterologist who was admirably

thorough. She searched for patterns, tested for parasites, Crohn’s Disease, Celiac

Disease, Colitis, prescribed medications to strengthen my gut and balance my extreme

bowel “swings”, and even performed a colonoscopy on me at 27. When her only conclusion

was IBS, she realized it was only half of the puzzle and referred me to several other

specialists in an attempt to rule out additional menstrual-related conditions she

hadn’t detected, but those proved fruitless too. Without answers, I felt trapped in a

physical and emotional prison without an exit.

The severity of my condition amplified when one summer morning my period made its

grand entrance in standard fashion, and after the usual fiasco, I convinced myself

that the four ibuprofen I’d taken would soon kick in, the pain would fade and I’d be

able to power through the work day. When I got to the subway I began feeling

increasingly worse and seven stops later, I stepped off the train and collapsed. A

kind fellow passenger carried me to the upper level of the station and I woke

surrounded by a policewoman, an old woman aggressively flapping her fan at me and

several others offering water and concern. To this day, I’m still touched by the

kindness of those strangers especially during morning rush hour in NYC. Within

minutes, my fiancé came running down the subway stairs to lift me off the sticky

floor, shaking in pain, sweaty clothes and hair clinging to my face. It all felt very,

“knight in shining armor” until he brought me upstairs to his white horse, I mean

ambulance, waiting to take me to the ER … again.

Once my fiancé got me to the ER, the staff’s search for diagnosis seemed to center

around whether I had eaten that day. Seriously. They thought I passed out because I

decided to skip breakfast and due to my weight at the time, insinuated I may be

battling bigger issues with food. I lay there demeaned, humiliated, staring at the

ceiling while answering questions I knew didn’t matter. They suggested all the

regulars I’d come to know—ibuprofen, heat pads. Everything I’d tried a million times

before when doctors assumed I was just having a “tough period” or exercising

starvation tactics. To them, I was another pile of symptoms on a table. No one got it

and I was sick of trying to explain it. I felt like I was crying for help in a room of

padded walls; they weren’t listening.

 

I was newly engaged and instead of blissfully wedding planning, every month when my

period came I would count 28 days out through each month remaining until our wedding,

just praying it didn’t land on that day; not because I was concerned about bloating or

acne like most brides, I just wanted to be able to dance with my husband without

feeling stabbed in the gut or needing to run to vomit. The thought of that kind of

pain on what should be the happiest day of my life was utterly terrifying.

While I was spared on our wedding day, in addition to everything else, I had begun to

feel the psychological effects of my condition. I felt crazy, I questioned if my

stress was manifesting the pain, if I was a hypochondriac or if all women experienced

this and I was just weak. I was now 28 and for ten years I had lived with fatigue,

watched my weight fluctuate, struggled to eat, suffered in chronic pain, feared my

period, had a colonoscopy, countless ultrasounds and pap smears by random

gynecologists and ER doctors alike. If I had to guess, I’d say approximately 73% of

the medical population in NYC had seen my vagina. I was exhausted and utterly

defeated, but still wanted to believe this didn’t have to be my way of life.

One day while searching online for a correlations between my various symptoms, after

all that I’d been through, it ended up being a simple Google search that led me to my

answer; search result: “When Endometriosis is Misdiagnosed as IBS”. I read the article

and had every single symptom; it was Endometriosis. As defined by the Mayo Clinic,

Endometriosis is “an often painful disorder in which tissue that normally lines the

inside of your uterus grows outside … Surrounding tissue can become irritated,

eventually developing scar tissue and adhesions … it can cause pain — sometimes

severe — especially during your period.” The article further explained that because

symptoms vary so widely woman to woman, they are often mistaken for other conditions

making the disease incredibly difficult to properly diagnose, causing most women

affected to spend an average of 8-10 years being passed between gynecologists and

gastroenterologists before diagnosis. To think that an entire medical community could

be so oblivious to a disease causing so much pain.

Through continued research, I found that one of the most renowned Endometriosis

specialists in the country was based right in NYC. Two weeks later I was in his

office. After an initial consultation and several follow-ups, my husband and I learned

that surgery was the only guaranteed method of diagnosis and treatment due to the

undetectable nature of the disease. We decided to move forward and when I woke from

surgery, they had removed my Appendix and 41 legions of Endometriosis from my ovaries,

vagina, cervix, bowel, rectum and lower back. The depth of the scar tissue also

indicated that the disease had likely been growing as far back as my first period. I

was 31 years old.

It’s been more than two years since my surgery. Following the procedure, my symptoms

temporarily improved and I made significant adjustments to my lifestyle including an

anti-inflammatory diet and consistent exercise, all proven to reduce inflammation and

symptoms. Nevertheless, Endo doesn’t have a cure and while the surgery provides

temporary, symptomatic relief, no matter how good or informed the surgeon is, it is a

cellular disease and will grow back — as mine has. My gastro symptoms have begun to

creep back, along with period cramping that has grown stronger each month, painful sex

and worst of all, fertility challenges.

After living so many years as a walking pincushion, when our fertility struggles began

after over a year of trying, I wasn’t ready to go back into the lion’s den with a new

set of issues. My husband and I initially agreed on a natural approach with a

specialist concentrated in acupuncture for Endometriosis-related fertility problems.

She helped us understand that as an autoimmune disease, symptomatic or not, Endo

continues to cause fatigue, internal inflammation, gastro issues and directly affects fertility for a myriad of reasons. Her primary goal was to increase circulation in the reproductive system and reduce inflammation using Chinese herbs and supplements while creating a healthier environment for pregnancy. Devastated as we were to learn of Endo’s relentless nature, we were also encouraged to be working with someone so informed and sensitive to our challenges. We left my first treatment and one week later found out I was pregnant.

To say that I was shocked is an understatement. I had peed on and thrown out so many

tests that when it was finally positive, I nearly threw it away out of habit. I always

had this romanticized idea of how I would someday tell my husband the news, but when

the moment came, there was no quirky, surprise reveal, I just walked out of the

bathroom with a pregnancy test shaking in my hand and said … “I think I’m actually

pregnant.”

Two weeks later, I miscarried. At first, I tried to convince myself it was just

implantation spotting, but as the bleeding and pain intensified, I knew the truth. I

called my husband to come home where he found me in our bed, inconsolable and writhing

in pain. That morning, as he carried me into the ER once more, I felt a sense of

helplessness I didn’t know existed. I fought for help, I’d gotten help, I did

everything right, and once again my body was failing me. Failing us … the three of us.

My husband and I have now been married six years and even before that, he has stood by

me every step of the way, good, bad and ugly. Even in the most difficult times, he has

continued to be an incredibly patient support system, but he didn’t sign up for this

life and he too is suffering. He’s suffering with the helplessness he feels each time

I’m sick or in pain and he’s suffering on the days he wants to be close to me

physically or emotionally and I just don’t have it to give. In those moments, the only

thing we have to offer one another is our hand, but it’s the hand of a partner —

someone battling through something difficult without judgement or resentment, but with

love and commitment. 

My husband may not physically feel my pain, but unlike so many doctors he’s never questioned or diminished it. He’s never given up on me, made me to feel like I’m crazy, or damaged, or an inconvenience. And he has always believed me.  He reminds me that my feelings are expected, my anger is valid, that it’s still “not normal” and that no matter what, I am enough just as I am.

The months after the miscarriage were the hardest of my life. And they’re still not

totally in the rearview mirror. I have days where I’m broken-hearted, defeated,

depressed and just when I begin to feel like myself again, the next day I wake to the

weight of guilt on my chest, unable to face myself or the world. If anyone ever told

me in advance the emotional toll Endo and everything that comes with it would take

from me, I never could have believed it. I imagine this is how anyone with a form of

chronic or terminal illness feels. For women living with Endo, there’s a reason we

have titles like “Endo Warrior” or “Endo Sister” and slogans like, “Fight Like a

Girl”, because we’ll never stop fighting to be heard, never stop fighting for an

answer, never stop fighting for a cure and never stop fighting for the quality of life

that we deserve. I am 34 and still fighting – for my body, for my partner, and for our

future family.

2 Comments

  1. Chelsie 1 year ago February 23, 2019

    Thank you for sharing your story. This is my story also. I’m glad I’m not alone honestly.

    REPLY
  2. Guest 1 year ago July 10, 2019

    Thank you for the lovely stats…I wish you and anyone else would add a year or two as some people probably think that this happened years ago. My diagnosis took 30 years.

    REPLY

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