What Once Was, Is Now Lost

While in Atlanta for my third endo-related surgery (check it out at The Day Before the Day Of and Always A Zebra), I had the privilege of being interviewed by the filmmakers behind the smashing new documentary on endometriosis called Endo What? One of the questions that Shannon Cohn, the director, asked me was if I felt betrayed by endo. For me the answer is a resounding yes, but actually explaining it is a different monster altogether.

I grew up as a really healthy kid. Aside from the occasional cold or ear infection, I never really got sick, and I certainly didn’t have any diseases that could be classified as chronic.

Looking back, I realize I had symptoms of endometriosis starting when I was about 14. My periods were occasionally very painful and debilitating, from late high school into my first few years of college. But any attempt to diagnose what was going on came up short because of a lack of education, not only on my part, but on the part of my OB/GYN as well. The below photos are of a piece of paper my mom recently unearthed from some stuff buried on my desk at my parents’ house where I grew up in New York. It appears that in 2007 I had written down my symptom history for my OB/GYN because I remember being concerned that I hadn’t gotten a period in several months and when I did get them, they were pretty bad. When I look back at this paper knowing what I know now, I see that it couldn’t be more obvious that I had endo. It’s hard to read, but at the top of the page, I listed:

  • Pelvic pain (hot, cramping sensation)
  • Low back pain
  • Full sensation/pressure in lower abdomen (feels like my uterus wants to explode)
  • Going from lying down to sitting up or sitting up to lying down induces severe cramps (sharp, burning, pressure)
  • Often pain while urinating or having bowel movement

Those symptoms are classic endo. My OB/GYN should have had a strong enough suspicion to refer me for a diagnostic laparoscopy. It was right in front of her the whole time. And she did nothing.

And all this time, endometriosis has gotten away with being sneaky by being a disease for which the education, even among healthcare professionals, is abysmal. I can’t believe I didn’t even have a physician willing to put the pieces together in a patient who was clearly symptomatic of a disease that her area of medicine is supposed to be able to treat. The only response she gave when I brought up the possibility of having endometriosis (after having done my own research) was that I didn’t have enough symptoms to diagnose because I wasn’t sexually active and we didn’t know if sex was painful. Really. So what did she expect me to do? Throw my values to the wind and tell my then-boyfriend-now-husband,”Sorry, honey, I know we’re waiting for marriage, but my doctor says I have to have sex to see if it’s painful to see if I have this disease that’s causing my horrible pain.” Think of how ridiculous that sounds!

imageEndo was there the whole time. And no one knew about it. I could have been diagnosed at the age of 21 instead of 28. It would have saved me a lot of pain and grief.

I hate endo. I just hate it. It’s taken away from me things I can never get back.

I can never get back missing Amanda and Drew’s wedding. On that beautiful day in October 2014, I woke up to find myself again in such gut-wrenching pain we were debating a visit to the emergency room. It wasn’t until a friend texted me from the reception (3 hours away) asking where we were that I realized, in a haze of pain, that we had completely missed the wedding and I hadn’t thought to contact anyone as I lay in bed wishing for death to come for me. I still don’t know if Amanda has forgiven me for that. But that wasn’t the only time. I can never get back missing Ken and Laura’s wedding. Or Becky and Jeff’s wedding. Or Elizabeth and Ben’s wedding (although I just barely managed to make it to the reception for that one.) Or missing Andrea’s baby shower.

I can never get back all the times David and I could have possibly been intimate with each other that we weren’t able to because of the pain associated with intercourse. And having saved such moments for marriage, they were supposed to be special and meaningful.

Endo didn’t take away my ability to have kids in terms of directly affecting my fertility, but it has significantly delayed our attempts to start a family by needing to wait to try for a family until after surgery and then heal from surgery (three times). I had wanted to have kids when I was 28. I’m almost 31 now.

I’ll never get back the money from having to go on short-term disability and only getting 60% of my salary.

I’ll never get back an entire summer I lost, spending every spare moment in bed because I was feeling too awful to get out of bed. I could have spent that time getting to know my brother-in-law, Brian and my new sister-in-law, Heather who were living with us at the time. Now I feel like I barely know them because they live on the other side of the country.

So yes, I do feel betrayed by endo. It took what was a normal, happy life and made it a living hell for about 14 years.

This is why I started this blog.

To raise awareness.

Because it’s one thing to just say that endometriosis affects 176 million women around the world. We know that. It’s an oft-quoted statistic. It’s another thing entirely to say that endometriosis has, in many cases, stopped us from living our lives to their full potential.

We’ve been betrayed by our bodies for long enough. We want our lives back! And the only way we can do that is to raise awareness that enough is enough and we’re not going to stand for sub par care any longer! We are human beings. We are women. And we deserved to be treated like we matter!

Endo will continue to betray us if we let it. Let’s stop the vicious cycle. Seek care with a specialist. My life alone demonstrates what a difference that can make! To see my excision adventure story with world renowned Dr. Ken Sinervo at the Center for Endometriosis Care check out:

And for follow-up with Dr. Sinervo check out:

We don’t need to let this disease control us any longer. It sounds cliché and silly, but stand up and fight! Because if we don’t…who will?

💛 ribbonrx

7 thoughts on “What Once Was, Is Now Lost”

  1. I feel very betrayed by my body too. I hope it won’t be this way for you, but endo has now cost me my fertility. Because of this disease, so many of us end up struggling with infertility. I won’t be able to have biological children because endo destroyed my ovaries and ultimately they had to be removed. It’s a terrible disease with serious consequences and I so appreciate everyone who’s trying to raise awareness and search for better treatments and cures! 💛

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  2. Stage 4. Not diagnosed until 43 years old. Feel completely betrayed by the lack of education and knowledge of this disease that led to my late diagnosis, decades of suffering, and infertility. Sick of women being told it is just part of being a woman. I can never get back those decades, not missed events, nor children that I will never have. Devestating. Keep fighting so other women don’t have to go though this.

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  3. I totally agree! My symptoms started at 15 and not once was the possibility of endo ever mentioned to me. Instead they put me on birth control and I stayed on it until I was 31. It wasn’t until our 2nd cycle with our 2nd RE that she figured out that I had it and sure enough, when she went in during surgery, I had stage IV endo.

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  4. Reblogged this on ribbonrx and commented:

    This was a tough post to write last year, as I came face to face with new evidence indicated how blatantly obvious it was that I had endometriosis…yet no one helped me. It’s a story told time and again by countless women. We need prolific education. And we need a cure. 💛🎗

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