I Want to Punch Endometriosis In Its A-Hole Face

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It was 2004 and I was working as a Psychiatric Technician at U of M Fairfield Hospital. To be clear, the first part here doesn’t directly tie in with endometriosis, but it did sort of start the trail…

“Dave!” Someone shouted from across the unit.

“Your wife just had a stroke!” They followed up

What? A stroke? She’s like 22, there is no way in hell she just had a stroke.

I ran over to the main desk area and grabbed the phone.

“David?!” She sounded really scared and sort of mumbled.

“They said I had a stroke…”

Ok. They really DO think she had a stroke. Without hesitation I told work I was leaving and I sprinted out to the car for the 90 minute drive from Minneapolis to St. Cloud, MN where we lived.

Turns out, she had Bells Palsy. Since it sort of presents stroke-like in the face, the first impression was that it was a stroke.

Over the next few months her face slowly gained back movement. Through our wedding day, honeymoon, all sorts of things, the right side of her face sat motionless, unable to move.

During her recovery, I’ll never forget how mean people were to her too. I’d be playing shows and she’d come to watch and listen. Aware of her facial paralysis, she’d wear a ball cap down low on her head. Stupid asshole mean girls would still notice and make passive shots at her from across the bar.

She continued to recover and fight through it. Over the next couple of years we moved a couple more times. Once for a short stint in Indianapolis, then on to Columbus, OH.

The Dizziness Kicked In

“David?” she asked.

She’s always calling for me like that across the apartment. I’m assuming she just needs me to reach for something or rip my ass for not putting something away…

“I can’t hardly get up without wanting to vomit”

She was so dizzy she couldn’t hardly raise her head up. Probably just the Palsy acting up again, we thought.

She went and saw a doctor and he said it was her eye sight. He prescribed glasses and sent her on her way.

Aches and Pains

She’d get sick and have really weird, deep aches in her bones and other weird symptoms of things. I always just chalked it up to her being stressed out. Odd pains here and there. Shortness of breath. Really bad shortness of breath.

We’d go to see a Doc and he’d say nothing was wrong. I’d assume my wife was a hypochondriac and we’d just continue this cycle for the rest of our lives.

I’m going to jump around a bit on you in this article, but I need to say that during “that time of the month” she was unparalleled.

Dudes – you think you have it bad?

No way. I don’t care how bad you think you have it. I thought she was going to murder me some days. Again, I just chalked it up to a little bit of craziness.

Shawnda is a mega-strong lady. Loud. Sassy. It’s one of the main reasons I fell in love with her. So, “that time of the month” would be her real self times 100, right?

Wrong.

There was something darker looming in the distance. Growing. Taking its toll, slowly. Tearing her down.

No one saw it either. The incredible pain sometimes 2 weeks leading up to her period. That alone should’ve tipped someone off…NOPE.

Nobody.

Anemia, M.S., Cancer, etc.

After our son was born some of the weird sick symptoms started to come back with a vengeance. Dizziness. Aches and pains.

We saw a doc again and she said Shawnda had low blood iron, was anemic, and put Shawnda on blood iron treatments every week. I’d sit there beside her as iron pumped into her system for 3 hours. She’d fall asleep. I’d nod off and jerk forward as if I were about to wreck a car. Not sure why I do that.

Fast forward a couple years and the treatments really hadn’t helped much. Muscle aches, bone pain, shortness of breath. Incredible pain in her abdomen area. Constipation.

So – we started the Trail of Physicians again. One doc apologized and told us that she had Multiple Sclerosis.

I’ll never forget going for a run that night. Tears streaming down my face as I anticipated the rough seas ahead. Our life was about to change in the most drastic way and I didn’t know how to handle it. It was way too much for me.

Turns out that it was not M.S. though. This other doc over here said it was Cancer.

So began that little fun ride. Cancer, huh? Nothing scarier than that. I thought I was scared when we thought she had M.S…nothing compares to the scare of Cancer. We hunted that down for a month or so. Me, shitting my pants the entire time.

Nope – wasn’t cancer either.

We saw a specialist and he said she was crazy.

HE SAID SHE NEEDED TO SEE A PSYCHOLOGIST.

For what it’s worth, I’d still like to punch that guy in the mouth.

And yea, I know people make mistakes. But, you have no clue how many damn doctors we saw that had no idea what was going on. Some didn’t care, I know. Some had their own problems and were just going through the motions.

Some didn’t stay up on their training and maybe weren’t really in it for the greater good like they should be. Just wanted to make a buck and drive a nice car.

But to write her off as mentally ill?

I’ve seen that guy around a couple times since then and you have no idea how bad I want to roundhouse his ass.

Endometriosis

I’ll admit. I did not think Shawnda was crazy, but she is a really stressed person. My theory was that her anxiety was causing stress and prolonged bouts of stress can do all kinds of crazy things to your body. It can literally make your hair fall out.

Some of that may have been true. But, one guy thought differently…

“I think you have endometriosis…” he said. I can’t remember the docs name, but he had a hunch. So, he referred us to a specialist. The specialist confirmed.

Hallelujah.

Almost.

To truly confirm, Shawnda needed exploratory surgery. How flippin’ scary does that sound?

“Uh, yea…we think you have this, but to really find out, we have to cut you open and dig around in there…”

If they didn’t find anything, it was back to the drawing board. I honestly figured we’d be back to the drawing board.

But, they found something.

It was like I nailed a game winning three-pointer. I’ve never been so happy to hear a diagnosis. This meant there was light at the end of the tunnel.

The doc emerged from the middle of surgery to let me know that he had removed 22 endometrial tumors and Shawnda would be well on her way to recovery.

Initial Recovery

She got better for a couple months, but started to decline again. At first we were in denial about it. Then we came to terms with it. She really was getting worse again. Worse than before, actually.

It’s gotten so bad that she can’t get out of bed some days. She’s really tough, so she fights through it. It’s really hard to watch. When her shortness of breath gets really bad…gasping for air. It sounds like she’s drowning.

But, there’s light again. This Friday at 5 a.m. she is getting a hysterectomy. A partial one, that is. They’re supposed to keep her ovaries so that she doesn’t get thrown into menopause in her early 30s.

The catch is, she also has ovarian cysts, so if her ovaries are wrecked, they’ll have to remove those too.

Throwing her into menopause in her early 30s.

There is some light though

Either way, with that demon uterus out of her, she’ll feel better. I’m scared for the recovery, but I’m excited for the future.

Selfishly, I’m excited to have my wife back. Our son Howie is now 5 years old and has never really seen his mom at full capacity. She’s a sight to behold when she is…inspiring.

I’m really excited for that.

A few last words

I’d like to toss this one out to the healthcare professionals of the world:

Please study up on the signs and symptoms of Endometriosis. We saw WAY too many of you that never even mentioned it as a possibility.

Yes, I understand maybe early on it was too early to tell, but looking back some of these symptoms were there…Someone could have mentioned that we needed to keep our eyes peeled for it.

To the women out there, mostly in Evansville, IN – that have stepped forth to help give her advice; to the husbands and ex-husbands that have come forward to give me advice…THANK YOU.

To all the friends from Ohio making the drive to help Shawnda – you guys are the best. To the Evansville folks we’ve met along the way joining up on the meal train during her recovery…thank you, thank you, thank you.

And lastly, if you have a couple extra positive vibes, toss ‘em our way this Friday at 5 a.m?

 

  • Amber Dawn Roberts

    Shawnda seems to be a strong woman and Dave I believe you are her backbone! God knew what he was doing when he placed you all together. My prayers are with you all;)

    • davidmhuffman

      That means a lot Amber…thank you :)

  • Leslie

    Wow that is a long and scary journey it seems, wish you both the best of luck friday morning. Will be sending prayers your way!! Stay strong shawnda, you got this!!

    • davidmhuffman

      Thanks so much Leslie!

  • Courtney

    It’s funny how much we trust doctors — and in the end they are human and can make mistakes and misdiagnoses… but that’s a whole other conversation. I will be thinking of your lovely wife tomorrow and over the next few days as well as you and Howie — positive vibes are being thrown from Chillitown!

    • davidmhuffman

      That totally fits though…the “being human” part. That’s actually what drove us to keep looking for answers. We’d have long chats about how we just KNEW something had to be going on…how those doctors are human beings and could be mistaken OR only as good as their most recent experience and/or training.

      Thanks for saying that…I sort of left that out. Chillitown vibes are the best!

      • Courtney

        Good for you guys. Although, if I was a doctor, I would be damn sure I was right if I have to tell a patient they have cancer. Or MS. Or that she is crazy (I’m not close with Shawnda, but that makes me so angry just thinking about it. Screw that guy.)

  • nickwangler

    You’re a phenomenal example to husbands everywhere. Praying for your family. Thank you!

    • davidmhuffman

      Means a lot coming from you Nick…thanks buddy :)

  • Steve Hardin

    I had no idea you guys have been going through all of this. My wife and I certainly believe in the power of prayer and will certainly add her to our list….actually add you both. Hang in there. I really hope this is truly the end of the journey and full recovery ahead.

    • davidmhuffman

      Thanks so much, Steve. We try not to put our problems out there very often…everybody has things they are going through…I really appreciate the prayers. Means a lot.

  • Julie Wettersten

    Dave, so sorry to hear what you and your family have been going through. I too have been diagnosed with endo through exploratory surgery and had lesions removed back in 2010 before Tim & I had our first child, our son Ian. We were so blessed to be able to have our little man as so many people with endo are unable to conceive or carry a child to term. You know there is something going on but just don’t know what. I know what you went through regarding the part of docs thinking you are crazy and misdiagnosis, etc. It was 7 years from the time I had seen the first doctor and told him what was going on to the time that I was finally diagnosed. I thank my doctor, Dr Morehead @ Adena OB/GYN for actually LISTENING to me as so many do not! I had to know if that was what my pain was coming from, and what the prospect of us having children actually looked like in reality. The pain is debilitating. It was a very scary time for both of us as we were newlyweds and just getting started in our life together. My symptoms weren’t as severe and easily observable as your wife’s but it is still a daily battle with fatigue, etc. Some days I really have to force myself out of bed. I am so glad to see someone pushing awareness and research on this issue. I read a really alarming article the other day on xenoestrogens, I will have to share it with you. One of that statistics that was particularly interesting to me was ” A study in 1993 showed that rhesus monkeys developed endometriosis after being fed food that contained dioxin, a xenoestrogen, over a four-year period. A fact worth noting is that 70 years ago, when the environment was free of estrogenic pollutants, there were only 21 reported cases of endometriosis versus the current 5.5 million in North America alone”. I am praying for you and your family during this difficult time and am praying for a full and speedy recovery from surgery!

    • davidmhuffman

      WOW Julie! Thank you so much for sharing that!

      Now that you mention it, we did have some troubles getting pregnant…but we were eventually blessed with Howie. Looking back, the endo was probably causing those problems.

      So glad to hear you got great care at Adena too. My mother has been there for over 30 years and has poured her life into that organization.

      Thanks a million for the prayers. I’m gonna pass this on to Shawnda. Not sure if Tim remembers me, but tell him I say hello ;)

      • Julie Wettersten

        Oh I’m SURE he does! He’s talked about you guys a lot in the past ;) Happy you shared your story and that things are getting better. NOT happy that it took you on such a crazy journey just getting to the correct diagnosis. How scary and awful! :(

  • Rick Allen Wiky

    What a great article, Dave. I know you guys have been been through hell with this. If there’s anything you need, please just ask. You and Shawnda are in my thoughts and prayers.

  • theatomsmasher

    Really well written. I’ll go with you dressed as ninja’s and we can beat the shit out of that guy.

  • Beth

    Your blog came up on my Google alert for ‘endometriosis.’ You sound like an incredible support. You’d be amazed how many women have pretty much the exact same story as your wife’s, mine included. I’ve read articles that attribute these common drastic oversights to a general disregard for women’s health and too readily classifying women as ‘crazy’ and ‘dramatic.’ It’s truly sickening. Good luck, I hope your wife finds the relief she needs.

  • Missy Bentley

    Being one that also is battling endo, this article means a LOT. People have no idea the pain we deal with on a daily basis. My husband thinks I’m losing my mind most days, I think. And if one more doc says it’s “all in your head”, I may punch him. Shawnda’s journey sounds eerily similar to mine. Glad she’s healing! Gives me hope.

  • Krystal Agic

    Hi Dave,

    I too suffer from Endometriosis. I know how devastating and confusing this disease can be. There’s a massive lack of knowledge and treatment available. I wanted to let you know of The Million Woman March for Endometriosis. It will be taking place on March 13, 2014 in Washington DC. I am so excited about this movement because it will finally bring much needed awareness to Endo. The link with more info and registration is: http://www.millionwomenmarch2014.org/
    It is free to register and attend! We all need to take a stand and let our voices be heard! I am a Precinct Manager for North Carolina, I would be happy to help with any questions you may have or direct you to your state manager. My email address is endomarch.northcarolina03@gmail.com. Hope you and your family can attend!