Endo in my endo

I’ve had a rough few days with intense aches, pain and nausea.

My symptoms got so bad this weekend that by Sunday night, I was struggling to walk. I had chills, night sweats and excruciating abdominal pain. I couldn’t breathe it was so bad. My belly button also looked weird – to me. Anxiety kicked into overdrive.

On Monday when my pain didn’t subside even with painkillers (and became worse), I frantically called my doctor. The nurse asked that I go in immediately.

They made me pee in a cup. My two doctors also did a physical examination.

It was then when they decided to share the lab results from the laparoscopic surgery with me. They had done an extensive endometriosis resection and removed endo from my ureters, pelvic walls, rectum, right ovary and underneath my uterus. I had no crazy adhesions from the previous surgery and no endo on my diaphragm or lungs (woot!).

They also told me that they had diagnosed me with adenomyosis on top of the endometriosis, which I’ve learned is not uncommon for women with endo.

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My uterus, according to my doctor, is enlarged (swollen), which is one sign of adenomyosis. It’s kind of like endometriosis inside my uterus (or endo inside my endo…geezus). I have a thick uterus lining, another symptom.

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My belly button was looking great, they said.

They said my new pain that started on Thursday could be a uterine infection or soreness from my operation. Or it could be something as simple as a UTI, which I’ve had before and know the symptoms. I won’t know whether it’s a UTI until tomorrow but as a precaution, they prescribed meds for that and not meds for a uterine infection. It’s been 24 hours and to be honest, I can’t tell whether they are doing anything. We’ll have to wait and see, I suppose.

The doctors disagreed whether inserting an IUD would help alleviate the adeno symptoms. One doctor said that my swollen uterus wouldn’t support the insertion at this time and the other doctor said it could help. I didn’t get it inserted.

A few years ago, I was diagnosed with tuberculosis and was given a 6-month treatment of antibiotics to heal from it. I’m not a doctor (obviously) but the symptoms I present sound like uterine tuberculosis as well.

Let’s just hope it’s not uterine cancer or something insane, right?

3 thoughts on “Endo in my endo

  1. Aw, you poor thing! 😕 If it makes you feel any better, I had a UTI after my first endo surgery. Based on the bug that grew, it was definitely from the catheter they put into my bladder during the surgery. Clearly someone didn’t quite clean me properly beforehand…😠 I remember for the antibiotics I was on, I didn’t feel better until after I’d taken my last pill on the 3rd day, so it may take some time. Hopefully it’s a UTI you have and not anything more serious!
    I likely have adenomyosis as well; my surgeon said my uterus was “soft and boggy.” Those symptoms have been getting worse over the past two years, ugg.

    1. The adenomyosis diagnosis wasn’t a surprise but it was still a hard thing to hear, especially after the doctor said there was a cure but it would mean losing the uterus. It’s not like endo where getting a hysterectomy does nothing. I have to decided whether I want children in like the next five years– if that’s even possible. I haven’t been able to. I hope you get relief soon. Thanks for your comment and I hope it’s a UTI too.

      1. Yes, dealing with adenomyosis is tough. I received my diagnosis when I was 28 and I’m 32 now, still without children. But I’ve had multiple other health problems get in the way of that, including a brain tumor that was affecting my fertility! 🤦🏼‍♀️ We’re still trying for children, but it’s tough when the clock is ticking. Hugs to you!

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