When Does Endo End?

Endometriosis-Symptoms-and-Diagnosis-RM-722x406

I hate endometriosis.

I’m writing this post at the end of an exceptionally bad cycle.  Except this cycle, and the one before it—and the one before that—were all exceptionally bad.  Worse, in fact, than the usual degree of bad.  Something is wrong in my body, specifically my uterus and hormones, I know it in my heart and I know it in the symptoms that manifest.  Yet every doctor I visit does nothing but send me on my way with words of regret that there’s nothing they can do.

What constitutes a cycle being “bad” are my ovarian pain levels, the number of days of irregular bleeding, and the amount of cramping.  This cycle I began bleeding 4DPO, or CD17.  Last cycle I began bleeding 2DPO, or CD15.  I bleed daily throughout the remainder of my cycle.  Then I get my period, which is a different kind of bleeding.  Finally, the bleeding ends.  But the ovarian pain?  It doesn’t end.  Ever… never.  EVER.  After a new cycle, the cramps resume at ovulation and I continue cramping the rest of my cycle until approximately CD2.  Irregular bleeding has been going on for two years now.  Ovarian pain has been nonstop for more than six.

All of these factors cause Jake and my love life to take a serious nosedive.  We’re fortunate if we can have sex ten days out of any given cycle.  Once the bleeding and pain begin, we have to kiss sex goodbye.  I hate that not only can I not provide him children, I also have to deprive him in this way.  It’s not fair that this affects him too.  My feelings of failure mount.

The level to which endometriosis is beginning to affect new aspects of my life is causing me emotional pain.  I feel defeated and hopeless more often than not.  I find myself retreating inwardly in ways I can’t describe.  Normally I can tough it out.  But I’m getting beat here: beat by this disease, beat by this pain, and beat by the knowledge that I have no control over any of it.  The white flag of surrender is so close; it’d be so easy to wave it and cry uncle.

I feel desperate for relief.  I’m endlessly seeking a reprieve, but it’s elusive.  Pain meds work only for the short term.  A hysterectomy is not an actual solution.  Docs tout hysterectomy as a “fix” only because the the almighty dollar reigns.  Birth control pills for someone who’s TTC is the most laughable solution I’ve heard.  (As an aside, why on earth would I feed my body estrogen [BCP] to help tame a disease that feeds off of estrogen?)  There is no answer to endo, and it angers and frustrates me to the point where I could scream.  I feel like I’m shaking my fist against the wind, one tiny sliver of resistance among a storm of catastrophic proportions.

The struggle is wearying.  Slowly, systematically I’m wearing down.  Yes, things could be worse, much worse; I’m aware of that.  But just because the struggle I’m facing isn’t as grievous as it could be doesn’t mean it’s still not a real struggle.  I cry because I just want the pain to end, the bleeding to end, and—sometimes—even the TTC to end.

The Lord knows that I’ve prayed for healing.  I’ve gone to healing rooms for prayer and to the alter at church services to receive prayer from others.  I’ve believed, stood firm when it seemed bleak.  Yet I also know that I live in a human body that’s subject to aches and pains and problems.  Faith isn’t a magic cure-all to make our ills disappear.  Faith doesn’t make the daily reality of pain and the symptoms any less real.  I wish I knew where the balances lies in my beliefs vs. the medial decisions I have to make.

Even though I know it’s not a cure, I find myself tentatively navigating the waters of having a hysterectomy.  The prospect of no more ovary to hurt and no more uterus to cramp and bleed is like a ray of sunshine in an otherwise gray sky.  Long-term hormone replacement therapy, increased cancer and dementia risks, and loss of libido aren’t thrilling prospects.  But I wonder if they’d be outweighed by the years of pain and bleeding relief I’d find in between.  I can’t believe I’ve reached this point, because I’ve always been so anti-hysterectomy.  But anymore I find myself slowly drawn to the idea.

Of course hysterectomy = no baby.  I guess I have to keep holding out for that.  For awhile at least.

Sorry for the negative post today, but I just have to be real.

 

 

 

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Author: Marixsa

Navigating the infertility waters and encouraging other mamas-in-waiting along the way.

20 thoughts on “When Does Endo End?”

  1. *hugs* I wish there was something tangible for you to take so that the pain would go away. Your post got me a little emotional. I can’t imagine what it’s like to live with constant ovarian pain. Have you met any doctors who have been helpful instead of turning you away with some painkiller or BCP?

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  2. I’m so sorry for this pain. I wish I could take it all away, the physical and the emotional.

    Also, I am sure that Jake would rather have less sex with you than tons with anyone else. This was something I had to remind my DH of often, that I’d rather have no kids with him, than 14 with anyone else on this planet. Our spouses are second only to God.

    I can never imagine what it is like to live with Endo pain. Do whatever you think is best for your quality of life.

    I do hope and pray that the pain eases.

    Thinking of you friend. Hugs.

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  3. Hi there. I’m speechless for you! I can not imagine what its like going through all that. This post is in no way negative, this post is your truth, your story and your safe place to let it out all without judgement. I hope that you felt just a *little* bit better after typing it all out and leaving it on the page. Continue to advocate for yourself – find strength to keep researching. I know the wavering you are feeling in your faith. Why? Why must you go through all of this, whats the end game here. I know! Keep steadfast, keep praying. Its ok to feel the way you do! I dont know that there is a ‘normal’ in this world of ours anymore. but! the enemy is always looking for a way in, remember that. He’s looking to take you down in any way he can. Keep leaning in girl! You got this!!

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    1. Kim, First off, I can’t believe you’re still hanging around here on my blog! But in a good way, of course! I love that we’re still keeping in touch. 🙂

      You’re right on time with your comment, so massive THANK YOUS for your timely word of encouragement.

      xx

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  4. EndoSister, I relate all to well. It’s so disheartening and exhausting to suffer from a disease with no real cure or long-term treatment. I literally feel your pain and defeat. I hate this for us.

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  5. I’m so sorry. It’s not fair that endometriosis is not really well understood or there are treatments that work for everyone. I’m sorry for your pain ❤️

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  6. Endo is awful…I experience the same and it absolutely sucks..no other way around it. You would think there would be something that could help in this day and age other than a hysterectomy but I understand you considering that option as I had done the same. The only thing is that sometimes, even after a hysterectomy, the pain continues for some..I just hope you are able to find some relief soon my friend..hugs your way!

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    1. Thanks for your kind words. My doc said the same this morning: sometimes the pain doesn’t leave, even after a hysterectomy. Scary stuff. Hugs to you as well, friend! xx

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  7. Never be sorry for a negative post, my love. Is it awful that I take solace in the fact that you had a bad period, too? That we suffer together? Hand in hand…even from a distance? Queue the Bette Midler song. And you have voiced our (and by “our” I mean mine…and I’m sure other EndoSisters) questions and concerns and doubts so perfectly. I love you, LadyFace. And I’m way over here sending you mental smooshes. Until our next periods…hang in there. ❤

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    1. Aww, thanks for the love! Solace is good: we’re in this together, right? Sorry—but sad—that you can relate. 😦

      (Also love you too bunches, and I DEFINITELY mean that in a super creepy, online stalker, massively obsessive way.) ❤

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  8. All of these responses are so beautiful! So many women are in this boat and sometimes it’s nice not to feel alone, even though I wish I could take this pain and disease from you! Praying for you always, sweet friend!

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