This week I received MRI results that confirmed something I’ve been quietly bracing myself for: my endometriosis has returned and this time, it’s affecting both my bladder and bowel.
The scan showed a lesion on the dome of my bladder, attached by an adhesion, and evidence of endometriosis or adhesions involving the sigmoid colon. Anyone who lives with endo knows it’s not just a “finding” on a report; it’s validation of the pain you’ve been carrying and a reminder of how relentless this disease can be.
I’ve had a hysterectomy. I’ve had major laparoscopic surgeries and general surgery’s. I’ve been through procedures, injections, and long stretches of recovery. And still, here it is again: reoccurring endometriosis.
Why Can Endometriosis Come Back?
One of the hardest parts of this disease is that there isn’t always a clear reason why it returns. Even after surgery, even in the hands of excellent surgeons, endo can come back or previously microscopic implants can grow over time.
Some of the reasons include:
• Microscopic disease left behind – Endo not visible at the time of surgery can later develop into painful lesions.
• Adhesions forming – Surgery itself can lead to scar tissue that traps organs against each other, causing pain that mimics or worsens endo symptoms.
• Deep infiltrating endo (DIE) – This type can burrow into organs and be difficult to fully remove, especially around the bladder, bowel, and ureters.
• Endo behaving unpredictably, Some people’s endometriosis is aggressive for reasons no one can fully explain. Hormones, inflammation, immune response all might play a part, but there’s no single cause.
The truth is: sometimes recurrence has a reason, and sometimes it doesn’t. And that uncertainty can be just as painful as the symptoms themselves.
Living With Bladder and Bowel Endo
When endometriosis affects the bladder or bowel, everyday tasks can become exhausting. It’s not “normal” pelvic pain. It’s:
• Burning or spasming in the bladder
• Feeling like you can’t empty fully
• Constant pressure or aching low in the pelvis
• Sharp bowel pain, particularly during movements
• Cramping that radiates into the back and hips
• Nausea, bloating, and cycling digestive changes
These symptoms get written off far too easily as UTIs or IBS, but bladder and bowel endo need specialist care.
Why I’m Seeing a Urologist
A urologist plays a crucial role when endo is found on or near the bladder. Their job is to:
• Assess whether the endo is affecting bladder function
• Look for involvement of the ureters (the tubes that drain the kidneys)
• Interpret the MRI from a urinary-tract perspective
• Plan safe surgical removal of endo on the bladder wall if needed
• Protect the bladder and ureters during any joint surgery with a gynae surgeon
When the bladder or ureters are involved, surgery becomes more complex. A urologist ensures that if the lesion needs to be shaved, excised, or if the bladder wall needs to be repaired, it’s done safely by someone trained specifically in urinary anatomy.
This isn’t something you trust to a general gynaecologist. This is specialist territory.
Why I’m Seeing a Surgical Gynaecologist
A surgical gynaecologist, especially one experienced in deep infiltrating endometriosis, is absolutely essential. Their role includes:
• Assessing the full extent of pelvic involvement
• Deciding whether a multi-disciplinary surgery with a urologist and/or colorectal surgeon is needed
• Excising (cutting out) endometriosis safely
• Managing adhesions that are pulling organs together
• Restoring normal pelvic anatomy as much as possible
• Reducing the risk of further complications or worsening symptoms
These specialists know the patterns endo follows. They know how it hides in tissue planes, how it wraps around the bowel, how it sticks organs together like glue. They know exactly what to look for in a complex pelvis.
When endo involves both the bladder and bowel, you need a surgeon who doesn’t just operate—but strategises, coordinates, and plans each step to reduce your risk and maximise your quality of life.
Why Specialist Care Matters
I’ve had general doctors minimise my pain and misinterpret my symptoms. I’ve been dismissed, mislabelled, and left to manage pain that should have been taken seriously from day one.
So this time, I’m stepping into this next chapter with a team that actually understands what they’re looking at and what I’m living with. And yes it’s daunting. It’s exhausting to start again. But it’s necessary.
Why I’m Sharing This Journey
I write about this publicly because so many women are living with bladder and bowel symptoms with no answers. Too many think it’s “just IBS,” or that peeing 20 times a day is normal, or that period pain should make them vomit.
It shouldn’t.
And we deserve better.
If my story helps someone push for an MRI, or ask for a second opinion, or request a referral to a urologist or a surgical gynaecologist—then sharing this is worth it.
Moving Forward
I’m tired. I’m in pain. And I’m frustrated that I’m dealing with recurrence after everything I’ve already been through. But I’m also determined. I’m lining up the right specialists. I’m advocating for myself. And I’m reminding myself that my symptoms aren’t “in my head”they’re on my scan, they’re in my body, and they deserve proper treatment.
This is endometriosis.
Complex. Chronic. Recurring.
But so is my resilience.
Cassie x
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