I HAVE ENDOMETRIOSIS

I HAVE ENDOMETRIOSIS

WHAT IS ENDOMETRIOSIS? 

In the most basic terms, endometriosis occurs when the endometrium (the lining of the uterus) grows outside of the uterus, usually spreading through the pelvic region and, in rare cases, to other organs.

Along with a woman’s menstrual cycle, the endometrium will swell, bleed and shed and then regrow every month. The essential purpose is to support a fetus within the uterus, it’s not meant to function outside of the uterus.

 

HOW IS ENDOMETRIOSIS DIAGNOSED

I’ve only recently been able to get a diagnosis for endometriosis because the only true way to be diagnosed is to be cut open so the doctor can look inside, and most ObGyns either don’t want to or can’t do this.

 

SYMPTOMS OF ENDOMETRIOSIS

I found out about endometriosis by accident after reading an article in a magazine that seemed to outline all of the symptoms I had grown to believe were normal. The article had an especially catching line: IT’S NOT NORMAL TO BLEED TO DEATH.

I have had debilitating menstrual pain since I was 11 years old. I mean rolling on the floor and bawling in the middle of a public place type of pain. Throughout high school I would get in trouble with teachers thinking I was exaggerating and just trying to distract the class when I would suddenly fall onto the floor writhing in pain.

When I joined the work force it got worse because most women don’t take sick days for their period, they take a bunch of painkillers and suck it up. Even my own sex as a whole seem to reject me, thinking I am exaggerating or being over-dramatic so I can have a couple days off each month.

More than just debilitating cramps, my pain includes bleeding so badly that I have to wear a pad and a tampon, and I still end up changing both every hour. This has been my experience once or more a month for the majority of 25 years of my life. I’m now in my late 30’s and, in the past few years, it has gotten much, much worse.

The vomiting is probably the worst part for me. The first day of every period since around age 13 I get a bout of unending nausea and vomiting. I will vomit every 10-20 minutes until there is nothing left inside, then I will just dry heave until I pass out. One a month this happens. It’s a nightmare.

Here is a summary of the various symptoms I experience on a constant basis, usually starting from ovulation and continuing for about 2-3 weeks through to the end of my period:

Debilitating Cramps
Hot Flashes
Night Sweats
All-over Aching Body Pain
Throbbing and Stabbing Breast Pain
Anemia
Gushing Blood (because “heavy bleeding” is just not a good enough description)
Dizziness (to the point of being unable to stand up without falling over)
Nausea and Vomitting
Migraines
Inability to Sleep
Exhaustion (despite sleeping 18 hours straight sometimes)
Overpowering Emotion (the smallest things trigger heavy grief)
And a major side-effect: inability to conceive (more on that, another time)

 

WRONG DIAGNOSIS 

I have been going to doctors and specialists since I was a child, and all I’ve ever been told is that I’m a “heavy bleeder” and it would get better after I had kids. I have been hospitalized three times for my pain, twice resulting in the “heavy bleeder” diagnosis, and once with a diagnosis of a colon infection which my gastroenterologist later told me was an incorrect diagnosis based on minor swelling in my colon.

A few years ago, my symptoms started to expand into the week before my period and become especially unbearable. My bleeding became irregular and heavier than ever, and I was missing way too much work while stuck in the bathroom.

I went to my primary care doctor to find out what was happening. I knew it was hormone related, but I had not yet heard about endometriosis.

My doctor noticed that my neck looked swollen and wanted to test me for thyroid issues. Long story short, several large nodules were found in my thyroid, hypothyroidism was diagnosed (another effect of endometriosis) and I was put on a synthetic hormone to replace what my thyroid was failing to do.

My symptoms did seem to improve slightly for a bit so I assumed this was a correct diagnosis. Then a few months later everything came back with a vengeance and I was back to square 1.

I continued to place blame on my thyroid for a couple of years, undergoing biopsies and numerous blood test only to find the nodules are definitely benign and my thyroid hormone production is now looking fine.  Then the magazin article opened my eyes up to an entirely new possibility. The moment I read the article and all the outlining symptoms, I just knew. I HAVE ENDOMETRIOSIS.

When I made this discovery I had just moved to a new state and had a brand new doctor. I brought up endometriosis to her and she had no idea what it was, hadn’t really heard of it. She looked it up and referred me to an obgyn and women’s healthcare specialist.

The fertility “specialist” knew what it was but wanted to do a slew of fertility tests I had already previously done dozens of times to evaluate my condition. She recommend putting me on birth control, something I had taken for 8 years previously that had done nothing. She said if we tried all these things she might consider referring me to another doctor for a laparoscopic surgery to look for endometriosis. Even the lady-part “specialist” seemed like she didn’t believe me.

I decided to find a doctor who specializes in endometriosis through my own internet research and was lucky enough to find one within my insurance network. Within my first appointment, after hearing my symptoms and seeing the reports from my previous medical tests, the doctor agreed to schedule me for a laparoscopy to look for endometriosis. Within a month I went in for the procedure and had my confirmation: I HAVE ENDOMETRIOSIS.

 

THE LAPAROSCOPIC PROCEDURE

The laparoscopy, for me, was one of the most traumatic experiences ever and not one I’m sure I could go through again. This is mainly due to an issue with my anesthesiologist, and not really an issue with my surgeon or the procedure itself. This is also a story for another day.

I was able to get 2 weeks of time off to be able to recover from the procedure. Some people can recover within a couple days, I definitely needed at least the full 2 weeks.

In the first couple of days after I could not stand up or speak full sentences. This was a result of the anesthesiology and not specifically related to the procedure.

I thought I felt a relief on my bladder, not having to pee so often, but that turned out to be a side-effect of having my bladder drained before the procedure and the numbness caused by the anesthesia.

Within a day of the procedure I unfortunately started my period and the pain hit me full-force. Even the heavy painkillers I was prescribed did nothing to alleviate my cramping, considering my insides were raw from lasers and now bleeding.

I also felt nauseous and couldn’t eat for about a week. This made me weak and caused headaches to the point where all I could do was just lay in bed all day. By the second week I was up and about and just mostly tender and trying to come down off pain meds. The nausea didn’t really go away, but I was able to eat some foods and kind of get back to “my normal.”

 

AFTER SURGERY 

A few days after returning to work, I started my second period within the month and bled worse than ever.  I bled so hard I had to sit on the toilet or in the bath tub for hours to allow myself to drain. I wasn’t allowed to use tampons as I was still healing, and my heavy-duty pads were soaked within minutes.

I called my doctor and he had me come in to check things out. I had to wear double pads in incontinence underwear under my regular underwear just to be able to go see him.

He said it was normal to have abnormal bleeding after this procedure, and gave me a 10-day prescription of a hormone to stop the bleeding. He said I’d start my period at the end of the 10 days and everything would regulate from there. The bleeding stopped before I could get the prescription filled so I decided not to take it because I wasn’t interested in a third period 10 days later.

A few days later I finally started to again feel “normal” for the first time in years. I had more energy and almost no symptoms or pain. I had the post-op follow up with my doctor about a week later and he showed me the images of the endometriosis he had removed with lasers from all over the inside of my pelvic region.

This was actually quite satisfying as I finally felt justified in my lifetime of “being dramatic” about my pain. It confirmed I am not a liar and that my pain was not imagined, and I finally had a diagnosis other than “heavy bleeder.” I HAVE ENDOMETRIOSIS.

My doctor also showed me images of an ink test where ink was pushed through my Fallopian tubes to see if it would come through to the other side. He tried the ink test three times (a lot of ink), but not a single drop came through.

He determined that my tubes were completely blocked by the endometriosis and unfortunately it could not be removed in the procedure. Devastating news for someone who is approaching 40 and dying to have a child. As happy as I was to finally get a proper diagnosis, I left the doctor’s office in heavy tears.

 

THE RESULT 

In the weeks that followed, I continued to feel more and more “normal.” I was able to finally be active and work on achieving things I had been trying to do for years. I completed a full week at work without any calling out, which was huge for me. I felt excited and like I might have a new chance on life.

My doctor had told me that endometriosis is not curable and it can grow back. He suggested I study Lupron as an option for trying to shrink and remove what was left as my best option for the possibility of being able to conceive.

I’m still in the studying phase on that one, the side affects are truly scary. (Update: I’ve had the injection. My review to come.) But I was feeling so much better I thought that at least I could adopt a child and be able to keep up without chronic pain, even if it meant getting a laparoscopy every few years to take care of the regrowth. Wrong.

 

STILL BAD

As of yesterday, post-ovulation and pre-menstrual, my symptoms have returned full-force (if not stronger).  I realized it was all happening again when I started to feel a minor cramping pain and then suddenly burst into tears after waking up in the morning. (Just to emphasize, when I say tears, I mean the heavy ugly kind.)

I can’t even sit up to write this post without feeling extreme dizziness and nausea. I have horrible hot-flashes and I haven’t slept a solid hour in the past 48 hours. My period is scheduled to start next week  for Thanksgiving and I’m beyond less than excited.

I will continue researching and learning more about this thing and I do plan to beat it and perhaps become an advocate for those who suffer with me. It’s the best I can do for now.

I share with you in the hopes that you will share with me. What is your experience with endometriosis?

 

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