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My Endometriosis Story

That’s a pleasant title for a blog post, no?

So many times I have tried to write about my story with the disease that has taken so much from me, but I’ve never really been able to. Usually, writing is therapeutic for me. I often say I don’t even know how I feel about something until I write about it. Writing to me is more natural than talking. Writing is how I deal.

And maybe that’s the problem. Maybe I don’t want to dig up all of these old emotions and deal with them again. Maybe the first time around was difficult enough.

But today, for the first time in a long time, I feel hope. Hope that I might be able to feel better, normal even.

I’ve shared a little here and on my Facebook page that I have had some health issues over the years, but I haven’t really shared any details. Because of all the reasons listed above, and then some. Endometriosis is a very misunderstood disease, and I have never felt qualified to be a spokesperson.

And frankly, I don’t want to be.

I don’t like talking about how I am unable to have any more children, because no matter how I cushion it, the fact is I have two amazing girls and for that reason alone, I should never hint at infertility. Because there are so many women who would give anything to be able to have even one. And believe me, I thank God daily that I was able to have my children at a young age before my reproductive system was ripped from my body in an attempt to cure me. It didn’t work, by the way. But that’s a story for another day.

I don’t want to talk about the daily levels of pain from my organs adhering to one another, because there are ten people I personally know that have situations worse than I do. Women that have had cancer and lifelong disabilities. So how can I possibly complain about pain?

How can I say that I have missed out on so much due to being in bed in pain or preparing for or recovering from terrible surgeries when one of my close friends passed away before her children were done growing up?

I don’t want to talk about hot flashes and weight gain and unbelievable irritability because I am still navigating the waters of menopause. And please forgive my cliché metaphor here. I don’t even want to begin to describe the brain fog that comes with menopause and pain killers. But I may be dumber right now than I was two years ago.

Some people think endometriosis is basically really bad PMS cramps.

It’s not.

Someday, I’ll share more about that.

But, not today. Because today, I have hope.

There is a clinic that has had success treating endometriosis, adhesions, infertility, and more with a specialized type of physical therapy. They will literally be breaking up the adhesions that have formed in my body due to surgeries and endo. The infertility is unfortunately already a done deal with me, since I had a complete hysterectomy. However, they have been able to help others that are facing infertility.

Previously, I had been led to believe that surgery was the only way to remove adhesions. By the way, surgery itself also causes adhesions. So if I had surgery, I might have a few months of no pain before more start forming. It is why some women my age (36) have already had 20 or more surgeries to remove adhesions that keep forming.

It is a vicious, vicious cycle.

Adhesions aren’t always painful. Some people actually have them and don’t even know it. In my case, they are positioned in such a way that causes pain so intense that I am sometimes barely able to function. I take so much ibproufen that I am afraid of what my liver and kidneys might look like. In June, I started taking stronger pain pills to get through a road trip with my daughter and now I take one daily.

I am able to have a few hours pain-free every day now, but the medication makes me feel lightheaded and disconnected. And just weird. And as I’ve been taking it, it seems to work less and less. I can really see how someone could become addicted because your body gets used to it so quickly and you feel the need for more just so it works. I have many addicts in my family history and I am determined to take only one a day. I hate how they make me feel, but I appreciate the little bit of relief it offers me.

However, it’s not how I want to spend the rest of my days.

I also don’t want to spend it lying in bed, crying.

I don’t want to spend it having a surgery a year, especially when both times I’ve had surgery, I had major complications and an increased recovery time. It’s rather… inconvenient, to say the least.

Sorry if I sound like I am whining. Again, please know how fully I understand that there are people with worse conditions. But this is my reality and it’s starting to wear me down.

Every day, I have to make the choice. A pain pill and a few hours of decreased pain and increased mobility, but feel like a zombie, OR no pain meds, a clearer head and barely able to move?

No one should have to make that choice.

Enter Clear Passage Physical Therapy.

This is the place that is giving me hope.

clear passage

I will be sharing about my experiences in the next couple of weeks. I am so full of prayers that I will be able to spread the hope that I am feeling to others. And, if it works? If I feel even 50% better and I can point women in this direction and save them from the trauma of surgery or a life full of pain killers?

That might just make everything I have been through worth it.

I mean every word of that.

If you think you might be a candidate for this therapy, I highly suggest you call and talk to a therapist. I am such an introvert that I will do just about anything to get out of talking on the phone to a stranger. But I am so glad I finally called and talked to one of the therapists.

Because that is when the hope began.

And hope is getting me through this day.

I start treatment tomorrow, on Tuesday. Will you pray for me?

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Comments

  1. Juanita Head says

    Praying for you. I have my own endometriosis story that has ended in hysterectomy. Thankfully it actually seemed to help me. I totally understand the pain, the misunderstanding even from those closest to you don’t always understand. I pray this works for you and givesee you relief. No one should have to endure daily pain. Keep the positive thoughts!! God bless you for sharing your story!!

  2. Cyndi says

    Just wanted to say that you will be in my prayers. I was one of the lucky ones with very mild symptons. Never have been sure if that or something else was the cause of my infertility, but we were lucky enough and blessed to be able to adopt 5 beautiful children. Good luck and keep us posted.

  3. Anna says

    You will be in my prayers that the God of Peace will give you strength and comfort! I too have had fertility “issues” these past many years but am blessed that The Lord has given me 4 amazing children!

  4. Mamala says

    Beauty from ashes.
    This is your banner.
    Yes, indeed, there is enough pain in our world to go around–
    And you are right to nod to that.
    You are also right–
    This is your pain.
    And you get to talk about it.
    We are all buoyed, relieved–given hope–when a shared story reflects our own.
    We are–not alone.
    From within our exhaustion–we are handed an encouraging sliver of hope to grip.
    Lead that hope home to our house, reveal its surprising weight–and suddenly–
    Deep, clear breaths.
    Ahhh.
    Hope.
    The Bible says, “Hope deferred, makes a heart sick–but desire fulfilled is a tree of like.
    ‘Proverbs 13:12
    Our job is to offer hope–from grace-touched hands.
    You have done this, daughter.
    And I know that you mean it when you say–If this gives one person hope–all that you have been through will be worth it. This is your true heart.
    You love like Jesus loves.

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