BIZZY WITH ENDO_METRIOSIS
There, I said it. V A G I N A.
Almost 50% of the world has one but when it comes to discussing it - mums the word. People cringe when they hear "women's health." As if we need a Summer's Eve commercial to make the conversation ... prettier.
But it's not pretty. We literally bleed once a month for 5-7 days and deal with plumbing down there that no amount of draino could fix. And if you don't bleed? That means you've got about a half a million dollar expenditure on the way or a host of other problems. Hundreds of thousands of women suffer in silence because they are too embarrassed to talk about their problems openly. To find a solution, we need to be vocal about the problem. So here I go ... here is my story of self-advocacy. My story of my battle with an uncurable disorder.
I have endometriosis. You might, too. But you wouldn't know due to misdiagnoses and lack of research. Most insurance companies will not pay as much as they should if anything at all for the extra doctor visits that come with the condition. Why? Because clinically, it is difficult; nay, impossible to diagnose without performing an invasive surgery. Because who really cares about a potentially cancer-causing, infertility inducing and extremely painful diagnosis? Most women find out the way I did but typically it's in their mid-to-late 30s or after they have children. I had just turned 23.
Searing pain took hold. Numb from the intense onset of cramps, the anesthesia simultaneously set in and the fog faded to blackness as I went under.
You lose track of time in that state. "The surgery went well - it didn't take long at all." I knew they were saying words - at least that's what it sounded like. W-O-R-D-S. Being drugged up in the hospital is easily the most incoherent I have ever been. My surroundings were a growing blur. I could hear me but outside myself.
It wasn't long until we time-traveled from the hospital to the couch. I remember wanting dumplings. Shannon brought me dumplings. The couch is where I remained for a little over two weeks with pain medication and dumplings. The scarring had begun to heal. The bloating had finally started to go down. I could feel like a *person* again but only after years of intense pain and poor treatment plans. The journey ahead was daunting but at least I had clarity from Seasons 1-3 of Liz's Medical Mysteries.
*Cue flashback music*
I received my first visit from every woman's favorite monthly guest. I never knew what kind of pain accompanied it. In middle school, the nurse called them "stomach aches" and came to the conclusion I was faking it. In high school, Advil was essentially as effective as a tic-tac. Other over-the-counter treatments made it mildly tolerable to get through the day. After multiple doctors, there was still no solution.
After my Sophomore year in college, I started to develop real problems. And even more real pain. My life was completely affected in every way possible. Work and school were disrupted, sex was often painful unless I was drunk. I would typically bleed, too. I had kidney stones, constant Urinary Tract Infections or UTIs and suffered frequent yeast infections from all the antibiotics I would take. I wouldn't want to be around friends in that state of pain. I was always embarrassed by my problems. The depression that began to set in by Junior year was inevitable. My stomach would be in knots and nausea would set in. The only true remedy was smoking cannabis. But I'll write a different story on that another day.
After graduation, I got my first job and I had to call out of work almost once a month. How can you tell your superiors - male superiors - why you can't come in again? How do you convey how much pain you're truly feeling?
I decided to quit my job after a year for various reasons but a large reason for my transition back to freelancing was because I was worse than ever before. I received an internal ultrasound where they found issues with my ovaries. I was asked if I had ever been pregnant or had any other complications.
"Would you consider removing your ovaries?" I had just turned 23. Children were the last thing on my mind.
The doctor I was seeing was cold and offered few options. I was told to continue my birth control through my periods to avoid them altogether and that it would help with the symptoms.
It worked for a short period of time but the cramps returned in waves of intense pain. I couldn't stop bleeding. Excruciating bolts shot through my lower back and abdomen. It was as if a very, very strong individual was stabbing me continuously from the inside. More cramps came in like a tsunami with the intent of utter destruction. Only receding to return with more vengeance. I remember thinking to myself, "Maybe this is dying."
By a fluke, the regular doctor I saw wasn't available. I saw a new doctor at Holy Cross and if I hadn't I would have continued receiving unnecessary treatments, rolling eyes and further complications. I was constantly playing a waiting game with growths they had caught but were not large enough for an operation.
But alas, another internal ultrasound showed one large mass on one of my ovaries had continued to grow and other smaller cysts on my other ovary had remained. It was not possible to know if my fallopian tubes were already blocked. I will never forget sitting in the doctor's office, following his pointer as it glided over the model pelvis, hearing fragmented sentences. "Cancer is a possibility ..." and "There are other fertility options."
72 hours later, I was dressed for my surgery.
It is now almost three years later and I still deal with symptoms. I got off the Deppo shot and remained off birth control for some time. The pain was on and off but I started to get cramps again after my move. I am now once again experiencing intense pain while playing Russian Roulette with various medications. I have been scared to share this story for quite some time. I always saw it as a weakness but realized how many people go through this, too.
Over 176 million women are affected by endometriosis in the US. Only after the surgery can the doctor be sure of the medical diagnosis. It cannot be seen on any type of external or internal scan, tested in blood or in urine and does not appear on x-rays. The one way to be sure is to perform a laparoscopy but insurance does not always accept it right away as treatment. In my case, we had to "watch and wait" with prescribed pain medication. This method puts many women at risk of permanent infertility, the spread of the infected area, bladder problems and more. After the "watch and wait" technique proved fruitful, they performed a laparoscopy and laparotomy to remove the excess lining and cyst.
There are so many things I wish I had known. So many pieces of information I wish my doctors had known. With lack of research funding and many misdiagnoses, these pieces of information may not make themselves apparent for years. My goal is to now share a series on the symptoms endured, different types of treatments, doctors and more. Listen to your body - the only advocate for yourself is you.
If you have any questions you want to be answered in future blogs or just want to vent about a similar situation you're in, feel free to DM me at @thatsbizzy or email firstname.lastname@example.org!