Have you seen this? Endometriosis Gene Discovered!

If you follow the endometriosis news, then by now you’ve heard about the recent findings by The Queensland Institute of Medical Research. They’ve identified the gene that causes endometriosis.

Having the gene identified will allow the scientific community to better understand the disease. This can mean more effective treatments and surgical options, with lasting results. In time, perhaps maybe this insidious nightmare that invades our insides will no longer plague womankind.

What’s really exciting me about this news, though?

Isolating the gene is yet another way of quantifying that this disease exists.

We know that, on average, it can  take up to 10 years for a woman to be diagnosed. This is once she presents with symptoms troubling enough to need a doctor’s intervention! Those with milder symptoms — heavier bleeding or painful period — may not realize their experiences are abnormal. It’s after years later when the endometrial implants have spread, that the symptoms become unbearable and they seek treatment.

And we all know what happens then…. the “take this pill and wait routine.” The standard treatment routine for dysmenorrhea (menstrual cramps) and menorrhagia (abnormally heavy menstrual bleeding) is to prescribe a hormonal birth control and manage break through pain with NSAID’s. This is the first line defense, if you will. Even with the gene discovery, I don’t see this changing any time soon. Why? Oral birth control pills can control mild endometriosis, and NSAID’s handle mild pain. When needed — or when you can get a doctor to prescribe them — narcotics are another option.

When these fail, doctors will usually agree to a laparoscopy. I get e-mails from exasperated women, fed up because their doctor refuses surgery. These women haven’t completed the required 4 or 6 month pill trial their doctor’s have asked for. I know, when you’re in pain 4 to 6 months is an eternity! Why don’t doctor’s understand this?

But unless you’re bleeding’s causing anemia, or you have a condition that contradicts the use of hormonal birth control (And getting a note from a primary physician helps back this up, ladies!), try to stick with the pill plan. At least once. Give it a go. Take note, though. If any of the following happens, make an appointment to see your doctor:

  • New or worsening pain
  • Pain that no longer responds to pain medication
  • Need to begin taking narcotic pain medication/or increase narcotics
  • Changes in mood
  • Amenorrhea (absence of period — unless you’re on a 4 month no break birth control)

So if you’ve finally reached the surgery and diagnosis part of your journey, congrats! Sort of. With diagnosis comes relief. Finally you have a name for this searing pelvic pain. This monthly hell has a label. And when you miss work or school due to your pain, you can tell them, “I have endometriosis.” Yet all they hear is “painful period.” Despite all of our laparoscopy pictures and scars, endometriosis is a very invisible illness.

My pelvis can be riddled with implants. They can cover my fallopian tubes and be infiltrating my uterus. And no one would know unless I freely told them. Our crutches, our bandages, they are on the inside. When I tell people I have endometriosis, I get the look over and am often asked what causes it. With so many theories, I always answer, “no one’s certain yet.”

As patients, we’ve been wondering for year that exact thing: What causes endometriosis? Now we have the gene. We’ve isolated this disease to its most basic element. And we can say, “See this gene, this is what causes it. Right here.”

To me, it’s just more validation. And I like that.

 

 

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5 responses to “Have you seen this? Endometriosis Gene Discovered!

  1. This IS such great news!! I’ve sent many samples of saliva and blood and tissue to various laboratories for study on Endo and this really makes me feel better. I agree with what you said about finally knowing it exists. It took my doctor almost 18 years to diagnose me. Unfortunately, birth control and other medications made it worse for me. While this is great news, I’m still waiting for the “thing” that stops my Stage 4 (even after hysterectomy). For now my magic is an extreme diet containing no GMO or processed foods, no hormones, no sugar. This keeps symptoms at bay and inflammation down. For the days I can’t move or get out of bed I pray to sleep through it!

    • Like you, KM, diet has been my saving grace. As to samples participating in studies (and this goes to anyone thinking of undergoing such a task), make sure you read the entire consent before sending off those samples. Know who your data is being submitted to and what it’s being used for. Now and in the future. And once the study is over, how that data will be destroyed.

      • I submitted my samples, surgical information and pictures, and partial medical records to Juneau Bioscience. Have you heard of them?

      • I have heard of them, KM. Yes. Whenever you submit to a study, make sure you know where your info’s going and how it will be used before doing so. No matter what the study is.

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