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Endo' an Era

Living with the Legacy of Undiagnosed Endometriosis

It wasn't supposed to be like this.

Clinging to the sheets on my hospital bed to try and survive the now constant lapping of waves of pain, two thoughts permeated my mind: "I can't do this any more," and "It wasn't supposed to be like this."

This, at that point, was the week after they finally found the endometriosis hiding in my body, waging war daily.

After more than 12 years, a dozen surgeries, complications from internal scars and adhesions fusing my organs together, multiple miscarriages, job loss, pain that grew in frequency and intensity, sex so painful it would debilitate me for days afterwards, and uncontrollable bleeding, an operation to remove my appendix finally brought into the open the one thing I was sure I had: Endometriosis.

The appendix had become twisted and stuck to my fallopian tubes. Whether removing it would help or not, they felt it was worth a try.

I'll never forget the moment the surgeon came into my room afterwards.

"The operation was a success, Mrs Bruce. You're pretty messed up in there—as you know. We separated and removed some adhesions... one of which was starting to strangle your fallopian tubes. We took out the appendix, which was also being wrung out and was fused to the fallopian tube as well. And we found endometriosis behind your appendix."

He then sort of grabbed my foot over the bed sheets, smiled and said, "You were right."

I don't think winning the Nobel Peace Prize would have felt any better.

Finally.

Finally!

I wasn't mad.

It wasn't "all in my head."

I wasn't—and this is a direct quote from my medical notes—"Just after drugs."

I wasn't exaggerating.

It wasn't that I had "a seemingly very low threshold for pain."

It was endometriosis.

24 hours later I was discharged from hospital with a gynae outpatient appointment. They didn't seem worried that I wasn't able to fully stand up, and neither was I. I may have shuffled to the car like Quasimodo, but I was internally doing cartwheels the whole way home.

Anyone in chronic pain will tell you, no diagnosis is not the good news your friends and family assume it is. A diagnosis, any diagnosis, is better than a hopeless prognosis of pain management and counseling.

My joy was short lived, however.

Like so many women who go under the knife to bring resolution to endometriosis, and its associated symptoms, you run the risk of surgical complications.

12 hours after arriving home, and after a night sleeping upright in a chair because I didn't feel right, the waves started.

First nausea ebbed in.

It was chased by pain.

It was followed by relentless vomiting.

I can only describe the pain like labour contractions: Frequent, growing in intensity, and now controlling me.

I was blue-lighted back to the emergency wing.

Five days and multiple scans later, there I was wondering how it has come to this.

When the doctor visited me that day I was by then too weak to talk.

I couldn't even drink a sip of water, and no amount of morphine or cyclizine would bring me any comfort.

I managed to muster the strength to whisper, "I can't do this any more," which prompted the final CT scan. I prayed as I was slumped outside the X-ray suite, "God, show them what this is."

I was met with a team of surgeons before I even got back to my room.

Turned out my bowel had become twisted, obstructed, and stuck to the keyhole wound from the appendectomy.

At the point of coming back from the CT scan, it was life and death.

I have to say waking up from that particular operation was blissful.

The pain had gone. The darkness had shifted, and for the first time in three weeks my face wasn't a centimeter away from a cardboard sick bowl.

Since that day, and the diagnosis of endo, I've had to navigate the trials of a damaged bowel and the eventual destruction of battlestar endometriosis.

After six months in chemical menopause from Zoladex injections I was given a total hysterectomy, at age 36, by robot. I mean, what?!?!

The HRT patches I opted for afterwards led to gallstones, which led to my gallbladder also being removed.

But...

Despite now being less a uterus, fallopian tubes, ovaries, an appendix, and gallbladder I am alive.

And...

I'm no longer a slave to a silent, hidden condition that ruled my life like a Victorian monarch with a staunch iron rod for the best part of my life.

I've changed my diet: Bye bye meat and dairy.

I've upped my exercise.

I've broken my dependency on painkillers.

My torso is still burned and scarred from hot water bottles and surgery, but there's hope.

My doctor still thinks I have some endo lurking in my bowel, but the tiny amount of HRT I now use seems to be helping me not feeding it, so today, as I write, it's a good day.

I've submitted this post not to vomit all me woes onto you, but to validate those of you who have this condition, to see your experiences and feelings are not imaginary, or exaggerated, or insignificant. And perhaps, also to let those of you living alongside an endo warrior understand how flippin' heroic she is.

We need to tell this story to bring down the average diagnosis times, currently sitting at eight to 10 years in the UK.

We need to tell this story to stop normalising pain.

We need to tell this story to elevate the plight of hidden disabilities. 

We need to tell these stories. Because your life matters.

Let me say that again for those of you still trapped in a pain limbo: Your life matters. Fight, girl. Fight.

Read next: Finding Peace
Lindsay Bruce
Lindsay Bruce

Writer, journalist, speaker, woman of faith, mum, aunty, wife and friend. Pathological peacemaker. Borderline oversharer. I love to have conversations that can spark change. Still believe the pen is mightier than the sword. 

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Endo' an Era
Read Next
Finding Peace