r/eds•
No_Worldliness_4346

Just want an answer / closure.

Venting

I am 35 years old. And like many of us can relate, I should not be able to say that I was born with a dislocated hip... diagnosed with degenerative disc disease and stenosis at 19 requiring spinal fusion... hiatal hernia at 23... retinal microaneurysms.. diverticulosis... and now at 35, stage 2 to 3 multi compartment pelvic organ prolapse requiring hysterectomy and repair with mesh and urethral sling to fix my severe urge and stress incontinence, rectocele, and uterine prolapse. I shouldn't have to manually splint to defecate at 35. I shouldn't have the degree of urinary retention I have.

I have searched and searched for an answer. I was fortunate enough that my doctors took me seriously and finding a legitimate institution to order genetic testing was not an issue. But I wanted a firm answer, I wanted closure. And so I wasn't particularly surprised when my initial reaction to learning that my invitae panel was negative was not relief, but frustration. Though that reaction did make me feel like I was faking this all somehow.

I am 35 years old. I should have complete control of my bowel and bladder. I should not have to fear getting stuck in traffic with nowhere to go to the bathroom. I should not have to fear my bladder completely letting go from under me. Something I never want to relieve.

I am 35 years old. You might technically be able to call me a geriatric pregnancy, but I should still have my fucking uterus.

I turned 35 last week, and spent my birthday prepping for a colonoscopy in advance of my POP surgery... and learned that I have diverticulosis. I also learned that my spinal issues have apparently progressed all the way up to C5 C6, which I guess could explain pins and needles I have had on the palms of my hands and the soles of my feet... why I've noticed that it has been difficult to hold my phone recently... why I have been hesitating tying my daughters shoes and buttoning her shirts, because I realized I have been finding it very difficult to actually do so. I could try to get more imaging studies to make sure I don't have stenosis in the cervical spine, but at this point, I am just too exhausted for additional work up.

I am 35 years old. I want fucking closure. I fell into a diagnosis of exclusion, and it does not feel like closure. It feels like I'm faking it, it feels like I have no way to protect myself from this happening again.

I did not expect to grieve at all after learning that I needed a hysterectomy. But I am certainly grieving now, and it has manifested unpredictably and in many different ways. One of which is coming to terms with the fact that I have been masking the amount of daily pain I am in, and I didn't even realize it. I am in fucking pain.

I am the type of person who always needs to keep moving, someone who loves to work. But I am no longer able to fully do my job. And that is also something I am trying to cope with... not going well.

I will have a good deal of time off as I recover. I have tried every which way to find an answer and have come up with nothing. So I am open to any and all recommendations as to what I can read, watch, or where I could go as I sit at home for the next several weeks or months, ruminating about why I am 35 and undergoing yet another major surgery for something only old people deal with, yet again with no real explanation, no answer.

Forgive me, but I want a fucking answer. I want closure.

If anyone has any recommendations ... literature, studies, websites, anything. I need an outlet. I want to feel productive. Even if it's false hope

Posted Sep 29, 2026, 2:24 AM UTC

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