Dear Diary,
I’m thinking a lot today about the things people don't say out loud.
When you tell people you have Stage 4 Endometriosis, they often say, "Can't you just have a hysterectomy?" They think it’s like taking out a faulty part in a car. I wish it were that simple.
For me, the damage is so extensive that it’s connected everything. It’s in my bowel, it’s wrapped around my pelvis, and it radiates through my back until I can’t tell where the CP pain ends and the Endo begins.
My doctors and I have had the hard conversations. Because the Endo has caused so much tethering, surgery is a massive risk. We aren't just talking about a recovery period; we are talking about the fact that I could wake up with a stoma because the organs are so fused together.
It’s a choice between the "devil and the deep blue sea." Do I live with the daily pain and the bowel issues, or do I risk a surgery that could change my life in a way I’m not ready for?
Living with Stage 4 means managing a "frozen" reality. It’s not just "bad periods." It’s a full-body management job every single day.
I’m staying in the recliner today. My back is screaming, my bowel is playing up, and I'm just trying to keep the "Manager" in me from feeling overwhelmed by it all.
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Support Groups
• Endometriosis UK: Leading charity in the UK. Helpline: 0808 808 2227.
• The Endometriosis Network (UK): Specialised support for complex decisions.
• Scope & CP Sport (UK): Advice on managing disability and health.
Note to international readers: Please look for support groups in your own countries. I can’t be certain of every single one, but you don't have to manage this alone.
