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A broken teapot has a piece that has fallen onto the table next to it, while pieces of tape remain on both parts where countless attempts to fix it have taken place.

An Honest Truth: I’m Worried I Won’t Get Better

Here is my reality that is hard to share. I have two illnesses that are not curable. On top of that, my endometriosis surgeries have created a lot of residual damage to many organs and muscles. Sometimes, I wake up shocked that even though I am in remission for endo, internally I still feel so broken. Catching myself each morning wondering how to make it through the day… Minute by minute questioning, “How does anyone live with so much pain?”. I have had relief in certain ways, like the fact its been a year since I’ve been in the ER. But then there’s things that don’t seem to go away… Things like seeing doctors so often, unexpected flares, and being unable to work. So, everyday I do wonder, “Will I ever actually recover?”.

Every day, I’m adapting

Here’s another reality easier to share. In the past 4 years since being diagnosed, I’ve adapted really well. I’ve learned about caring for myself in ways I didn’t know were possible. From big things like forcing myself to make all the calls to doctors and insurance companies, yo the little things like how to make my bedroom extra cozy for when I can’t leave it for days. There’s a lot I’ve gotten used to as well. Things like not working a normal job, having to cancel plans, and to the dreaded surgery preps. None of this gets easier or less painful, but it is my reality.

One day at a time…

The best way to put it is that I’m not happy with being sick, but I have made myself comfortable (as comfortable as I can be, at least). But being comfortable doesn’t mean the idea of living the next 10 plus years like this isn’t terrifying. Everyone says to take it one day at a time and honestly, I’m fully forced to. When you have pain so unbearable, I don’t know how anyone could function without doing so.

So, one day at a time it is. And one of those days, I’ll wake up and look back at the time when I was younger and terrified to be older and possibly more sick… Or even just the same amount of sick. And as I sit there, no matter how I feel physically, I’ll know that what matters most is that I made it there. Pain or no pain, I am still in one piece. And as for today, though my body feels as if its pieces are on fire and in the wrong places, I’ll survive the day and try again tomorrow.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Kryst_al21
    6 days ago

    Thanks for sharing! I’ve been dealing with a frozen pelvis involving 26 feet of small intestine from endo for 8yrs now, thought I had a handle on managing it, but now I have crazy kidney pain with blood in urine went to ER and all other test came back fine, no kidney stones (I was hoping for stones) the only thing that leaves is endo. Now I’ve been thinking…how can I live with this new 8 out of 10 pain that pain meds aren’t touching. (I’m on pain meds for spine issues, also helps me deal with endo pain.)
    How do i live like this? It feels serious!
    I have an appt. at an endo center at Mercy Hospital in Baltimore tomorrow, but I’ve been putting off a bowel resection for about a year, cuz they don’t know how I’ll come out… better or worse. And I’m just Scared!… that I’ll come out worse, so I’ve been waiting for an bowel obstruction cuz then it will be life or death and I’ll have no choice. But now cuz of this new kidney pain I can’t put it off anymore. Sorry for going on and on. I’m very scared! Every test is painful, n staff looks at you like you’re crazy cuz they see a healthy young woman, so they’re not comforting. My last surgery was horrible so now I have serious anxiety about medical test and surgeries. I’m so Scared!
    Thanks again for sharing and listening:) Say a prayer for me and I’ll say one for you. Krystal:)

  • Fela M’tima Dunfee moderator author
    1 day ago

    It’s okay! I’m glad you shared. It’s terrifying. Beyond overwhelming. I had a bowel obstruction but thankfully it wasn’t severe enough to need surgery but my god, it was a horrid experience. And I live in constant fear of it happening again. I recently found out I have new endo growths so I’m having another surgery in April, it just never seems to end. I will say that my bowel resection I had 3 years ago, maybe 4 years now (crazy!) helped so much. It was my most scary surgery because I was terrifed of complications. That being said, with a good surgeon who does bowel resections often, you’ll be good! I’m glad you’re going somewhere that knows endo. Talk to them about endo on ureters because that’s what caused to cause my kidney pain.

    Sending prayers to you!

    You’re never alone. 🙂

  • shiri
    1 week ago

    Fela,
    I’m so sorry to hear you are in such pain.
    I also have Endo and another autoimmune disorder.
    My first laparoscopy was 8 years ago, and I’m now almost 38, not sure how young you are but the fear of the future is something I totally share with you.
    Maybe this will give you some hope: I used to live with constant pain, but since following many many lifestyle changes I hardly have pain anymore, only rarely.
    There are some other things that I do suffer from now that I didn’t suffer from before, but I think pain is one of the worst things one can suffer from.
    If there was any advice I could give to my younger me, I would say: follow those really sad diets, the strict 8 hours sleep, no alcohol, no coffee etc. It is somewhat depressing at times, and I often feel deprived of life, but I also usually feel much better than I used to and that’s worth it.
    I am wishing you strength. You are not alone on this.
    x

  • Fela M’tima Dunfee moderator author
    1 day ago

    Thank you for responding! I appreciate your advice and am so glad you’ve found some relief. Diet does really make a difference, especially with bowel or bladder endo. It’s always such a rollercoaster with feeling better or not. Wish you well! 🙂

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