All you want to know surrounding this debilitating diagnosis and how it’s affected me and what Im doing about it now.
There’s a version we all have of ourselves that existed before pain became a daily language. A version of us all that moved freely, trusted easily, and didn’t have to calculate every step, every outing, every moment around what our body’s might or might not allow.
Theres also this current version of me the one writing this, who has been rebuilt from the inside out literally. While I never asked for this life, I’ve learned how to live it with a strength I didn’t know was possible.
“When Its Not Just Cycle Pain”
Endometriosis is often misunderstood. For many, it’s reduced to bad periods or typical responses from a doctor who cares more about easy answers and easy results. But bowel and bladder endometriosis?
That’s a different level entirely, when endometrial like tissue grows outside the uterus and attaches to organs like the bowel, bladder, ovaries’s even causing them to tether together. This is called adhesions, but many of us describe it more honestly like “Organs glued together”. Imagine your insides not being able to move the way they’re meant to. Every shift, every digestion, every full bladder the pulling, stretching, burning.
That’s daily life for me and many woman out there with Endometriosis of the bladder and bowel.
What does it actually feel like? Let’s talk about the symptoms people don’t always see, understand or talk about enough when we live with Endometriosis of the bladder and bowel.
Bowel pain that stops you in your tracks some examples of how I feel and maybe relatable for many is harsh knife like sharp pain that lingers or come on out of nowhere literally it catches you off guard, deep cramping, sometimes like your insides are twisting or spasming uncontrollably.
Pain with bowel movements, not just discomfort, but fear of going because of the intensity along with vagus nerve response (dizzy and lightheaded), nausea, bladder urgency and difficulty/painful urinating/voiding needing to go as nature intends but struggling to start or fully empty.
Burning, pressure, deep pelvic pain and a constant presence that can flare without warning daily.
Pain that radiates into the hips, lower back, legs and the rectum.
Bloating and inflammation the kind that makes you feel like your body is fighting something constantly like a literal disease or your usual outfit feels tighter out of the blue or pain from inflammation.
Fatigue not just tired, but bone-deep exhaustion from living in chronic pain.
Adhesion pain like a pulling/stuck sensation that makes your body feel restricted and tight it can feel mixed in with all of the above.
Then there’s that emotional side we all feel with Diagnosed Pelvic Pain.
The anxiety before going out
The mental load of planning around pain
The fear of not being believed or proving yourself.
The grief of losing the “old you” to this growing endometriosis inside you messing with your bladder, bowel, nerves, muscles, urethra the lost goes on and on. Its not simple its complex.
When You’ve Already Been Through Major Endometriosis Excision Surgery… And It Comes Back
For some of us this is the first but for some woman its there second or third (plus) surgery. This will be my fourth (but my second surgery for Endometriosis).
One of the hardest parts of my journey is this:
I’ve already had major excision surgery’s. It started with diagnostic laparoscopic surgery in 2021 seven months after having my third natural child birth, where they removed my fallopian tubes which where in terrible shape (inflamed and swollen), I signed the wavier before surgery about having them removed if needed. I already had, had three healthy boys (loves of my life) and three tragic miscarriage’s while trying to conceive, I was done my body was physically and emotionally done it was becoming to painful and I was high risk with all my babys and had to endure alot past 20/25 weeks gestation.
They diagnosed my painful Adenomyosis and removed it a year later in 2022 by hysterectomy (ovaries left), something I hoped would give me relief, space, a break to heal and relief from the constant pain I was in.
But my ovaries were left, which means my body still cycles monthly. I still experience hormonal shifts, PMS, and the rise and fall that comes with it.
And with that… the pain never truly left.
I then faced a diagnosis of Endometriosis only seven months after my hysterectomy, internally around the vault/cuff where my cervix used to be which caused chronic pain, so late 2023 I had major surgery to remove that endometriosis.
I now have diagnosed reoccurring endometriosis mid 2025 Bladder and Bowel Endometriosis, my organs are glued together from my bladder dome to my sigmod colon.
What I have also had as a means of the diagnosis process of elimination and maintenance.
Many Pudendal nerve blocks every six months.
Many Myofascial Nerve Blocks every six months.
Many Epidural Nerve Blocks every six months.
A Colonoscopy
A Colorectal Bowel Surgery
A Cystoscope Bladder Surgery
In many ways with Endometriosis of the bladder and bowel, it feels more concentrated, a-lot more intense and chronically the pelvic/bladder/bowel pain is horrific and the symptoms that come with it, the cross over of nerves and bladder/bowel normal functions are anything but normal.
Because endometriosis is growing there at a fast rate it took over a year for this development of bladder and bowel endometriosis, since my last endometriosis removal.
It has come back and its affecting my bowel and bladder glueing my organs together and crossing over my other diagnosed conditions Pudendal Neuralgia and Myofascial Pelvic Pain Syndrome which has increased inflammation, nerve interaction and increased chronic pelvic pain ten fold and I am now waiting for major excision surgery 2026. Im in talks mid April 2026 for this surgery.
There’s a different kind of emotional weight that comes with this to be honest it intimidates me incredibly…
Knowing what surgery involves, Knowing recovery isn’t easy its so painful for me, Hoping for relief, but fearing disappointment. Carrying the exhaustion of starting again and recovering again and the strain on my family and life that comes with it.
And then there’s the cycle itself.
Even without a uterus (removed because of Adenomyosis), my body still responds hormonally and during that time, everything flares.
Cycle Symptoms continued…
The inflammation increases.
The pain deepens and sharpens.
The bowel and bladder symptoms intensify.
Boobs still get large and sore
The fatigue hits harder.
The emotional load feels heavier, brain fog and mood changes become more obvious – I don’t feel like myself at all sometimes.
It’s not “just a cycle.”
It’s a full-body flare that can take everything out of you (I know this because I live through it too)
The Long Road to Diagnosis
For many of us, diagnosis doesn’t come quickly.
We’re told:
It’s normal, It’s just your cycle, Try to relax, You’re overreacting, wait… Blaaa blaaa – no way, heck no!
Meanwhile while symptoms worsen.
Bowel and bladder endometriosis can be particularly difficult to detect. Standard scans don’t always pick it up. You can look “fine” on paper while your body is anything but, it took me begging the GYNO for an MRI he didn’t think I needed to show this form of Endometriosis, trust your gut instincts they will never disappoint you like an average medical doctor.
I knew I had it, I said I have it, my intuition and gut instincts all pointed to Endometriosis at first I thought on my bowel until I started having trouble with my bladder it was painful to void and even harder to void the past six months.
The gold standard for diagnosis is laparoscopic surgery. Where specialists can actually see and remove the disease. But getting there often takes years of advocating for yourself, multiple doctors, Being dismissed, doubted, misunderstood, and pushing through when you’re already exhausted. That takes strength most people will never fully understand.
When Organs Stick Together
Adhesions change everything.
Your bowel can attach to your bladder. Your ovaries can become stuck.
Your bladder can be pulled out of its natural position.
This can cause:
Difficulty with bowel movements or they change
Urinary retention or urgency trouble voiding (you’ll notice this a-lot and maybe think it’s a UTI but its bladder endometriosis.
Severe pain with urinating or having a bowel movement from internal pressure, inflammation and nerves.
A feeling of your body being “locked” or restricted
It’s not just pain, it’s dysfunction.
And yet, so many women are expected to carry on like everything is normal. Its not normal to live with these symptoms.
The Invisible Battle
Here’s the truth:
You can look okay and still be fighting a battle every single day.
You can show up for your kids, your partner, your work and still be in unbearable pain.
Flare up from doing some normal mundane activity’s like everyday stuff people consider normal without pain.
Cleaning the house – pain/flare
Driving around doing that to do list – pain and flare up…
You can smile just “pleasing others for the sake of normalising normal behaviour” and still be struggling feeling guilty.
Living with endometriosis teaches you how to survive in ways most people never have to learn.
But survival isn’t weakness.
It’s resilience and can be an abundance of teaching, lessons and knowing what “a hard day” really is with chronic pain.
Learning Your Body, Reclaiming Your Voice
At some point, something shifts.
You stop waiting for your pain to be taken seriously. You start Tracking your symptoms, Understanding your triggers, Advocating harder at appointments, Asking better questions
Setting boundaries around your energy, finding appropriate specialists and doctors who are on your side.
You are the expert of your body a good specialist and doctor would know this.
Not the system that dismissed you, Not the medical system or people that minimised you.
You Are Not Broken
Endometriosis can take a lot.
It can take comfort, ease, spontaneity, parts of your identity.
But it does not take your worth.
You are not weak for needing rest.
You are not dramatic for feeling pain.
You are not difficult for asking for help.
You are navigating something incredibly complex — physically, emotionally, and mentally.
And you are still here.
Rebuilt, Not Ruined
Living with bowel and bladder endometriosis through surgeries, setbacks, and the uncertainty of what comes next changes you.
There’s no denying that.
But here’s what it also does:
It builds resilience, It deepens empathy, It sharpens intuition and It strengthens your voice. You become someone who knows how to endure and more importantly, how to keep going.
To the Woman Reading This
If you see yourself in these words, I want you to hear this clearly:
You are not alone community and support is out there you are never alone in this battle.
You are not imagining it what you feel is real and isn’t imaginary, always follow your intuition and your gut feeling. 9 times out of 10 mine has always been right!
Your pain is real, as real as you are. Never let anyone minimise your pain they don’t live with it you do advocate to be heard!
If you’ve had surgery and endo has made a come back, I see you, Im there with you in the same place as you don’t give up queen.
If you’re waiting for answers, I see you, please feel free to read my blog you may find some answers you need to help.
If your body still cycles and flares even after everything you’ve been through, I see you, I can relate I live this way too.
Keep pushing for answers.
Keep advocating for your body.
Keep trusting yourself, even when it’s hard.
Because you deserve proper care.
You deserve to be heard.
You deserve a life that is not defined by suffering or being silenced this is non negotiable!
And One Day…
One day, the strength you’ve built in survival mode, will become the foundation for something more expanding and deepening yourself and understanding of what works and what doesn’t.
Whether that’s healing, helping others, sharing your story, or simply creating moments of peace again.
This journey is not easy medically its extremely tough it wont be handed to you on a plate, your words matter and your diagnosis/documented conditions matter.
But it is shaping you into a woman who is capable and powerful.
Not in spite of what you’ve been through but because of it.
And that version of you?
She’s still up and coming, she’s unstoppable.
Cassie xox
Welcome Beautiful 