What No One Told Us: The Endometriosis Surgery Prep Guide We Wish We Had. Lessons From Co-design

Author: Joanna Morris, Pelvic Health Physiotherapist and Matilda Co-founder

1. You Will Have to Be Your Own Advocate

Many participants in our co-design sessions reported feeling dismissed, rushed, or pressured into making decisions without enough information. The medical system can sometimes leave gaps in communication, meaning you may have to advocate for yourself to ensure you receive the care you need.

What to Do:

• Ask detailed questions about the surgeon’s experience with endometriosis surgery, for example excision surgery versus ablation surgery, recovery timelines, and pain management strategies- this may even mean the option to see a pain specialist before your surgery!
• Request a clear plan for post-surgery follow-up—when will you see your doctor again? How will complications be handled?
• Take someone with you to consultations if possible. Having an extra set of ears, or someone to write notes, can help you understand the information later.

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2. Prehabilitation Matters: Prepare Your Body & Mind Before Surgery

Many patients shared that they weren’t aware of the benefits of “prehabilitation” (prehab)—preparing your body before surgery to optimise recovery.

What to Do:

• Nutrition: Reduce inflammatory foods and focus on whole, nutrient-dense meals leading up to surgery.
• Pelvic Physiotherapy: Working with a pelvic health physiotherapist beforehand can help manage muscle tension and support early post-op mobility.
• Strength & Movement: Gentle movement before helps to prepare the body and mind for after.
• Mental Preparation: Consider mindfulness techniques, journaling, or engaging with a psychologist, to help manage anxiety leading up to surgery.

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3. The Reality of Post-Op Pain & Gas Pain

Pain after surgery is expected, but what many weren’t warned about was the severity of gas pain from laparoscopic procedures. The gas used to inflate the abdomen during surgery can become trapped, causing shoulder, neck, and rib pain.

What to Do:

• Move as soon as you can (gently). Short, slow walks can be helpful.
• Use heat packs on your shoulders and back to ease discomfort.
• Drink peppermint tea or take gas-relief supplement.
• Ask your surgeon if they can minimise retained gas by removing as much as possible during the procedure.

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4. “You’ll Be Fine in Two Weeks” Is a Myth

Many participants were told they would recover in 1-2 weeks—only to realise it took much longer. Some struggled to return to work too soon, leading to disappointment, and confusion.

What to Do:

• Expect at least 4-6 weeks of gradual recovery, depending on the extent of the surgery. Remember, this surgery is variable, some people have a little work done, whilst others have a lot.
• Plan time off work accordingly. Some participants had to navigate taking sick leave—check what kind of leave you are entitled too, and have the challenging conversations with work colleagues earlier to avoid any confusion.
• Avoid heavy lifting and intense exercise for at least 4-6 weeks. Your body needs time to heal internally, even if external scars seem fine.

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5. You May Feel Emotional & Vulnerable Post-Surgery

Patients often expect physical pain but aren’t prepared for the emotional aftermath of surgery. Many reported feeling overwhelmed, anxious, or even experiencing post-surgical blues.

What to Do:

• Acknowledge that emotions may fluctuate. Surgery is a big deal—your body and mind need time to adjust.
• Have a support system—whether it’s friends, family, or online support groups, staying connected can help.
• Practice self-compassion. Healing isn’t linear, and it’s okay if recovery takes longer than expected. Remember, everyone is different, and every surgery is different.

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6. Be Ready for Digestive Disruptions & Constipation

Pain medications, anaesthesia, and surgery itself can slow down digestion, causing constipation, bloating, and discomfort. Many weren’t warned about this and wished they had been better prepared.

What to Do:

• Start stool softeners before surgery (with your doctor or nurses guidance)
• Stay hydrated—drink plenty of water!
• Eat fiber-rich foods gradually to prevent bloating while keeping digestion moving. Sometimes a liquid, such as a smoothie, may be an easier way to get some fibre in.
• Try gentle belly massage or movement to stimulate digestion.

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7. Knowing What to Pack for Surgery Can Make All the Difference

Many arrived at the hospital unprepared, only to realise they needed certain comfort items to make the stay easier.

What to Bring:

• Loose, high-waisted clothes—bloating and stitches make tight clothing uncomfortable.
• A heat pack for cramps and gas pain.
• Pre-prepared meals at home—you may not feel up to cooking once you are discharged. Keep some of your favourite meals in the fridge, making dinner time an easy heat and eat!
• Pillows for the ride home—placing a pillow over your abdomen can help reduce pain from seatbelt pressure.

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8. The First Post-Op Bowel Movement Can Be a Nightmare

One of the most common but least discussed challenges was the fear and discomfort of the first bowel movement after surgery. Many were not warned that straining could be painful, and for those with rectal involvement, it could be overwhelming.

What to Do:

• Take stool softeners early (before constipation becomes an issue).
• Use a footstool to get into an optimal  position- think knees higher than hips, belly and shoulders relaxed.
• Breathe deeply and relax—don’t force it.

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9. You May Have to Push for Post-Surgery Support

Some participants didn’t saw their surgeon after surgery or had delayed follow-ups, leaving them without clear guidance on what to expect.

What to Do:

• Schedule your follow-up appointments before surgery to avoid delays and to manage expectations.
• Track your symptoms—if something feels wrong, don’t ignore it. Tracking how you are feeling makes it easy to explain to your surgeon, GP, or nurse, what is going on.
• Remember your GP is always there if you have any extra questions.

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10. Your Relationship with Your Body May Change

Surgery, scars, and recovery can alter how you see and experience your body. Some reported feeling disconnected or frustrated with their body’s healing process. Remember this can be a form of grief, and many people with pelvic pain, and/or endometriosis, report a feeling of disappointment or distrust with their body.

What to Do:

• Give yourself grace—your body is healing (in its own time) and doing its best.
• Talk to a pelvic physiotherapist if movement feels different post-surgery.
• Seek support if needed—reach out to a psychologist to work through some of the emotions you are feeling.

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Final Thoughts: Knowledge is Power!

The biggest takeaway from our co-design sessions was clear: people need more information before surgery to make informed choices and feel more in control. While every person’s experience is different, knowing what to expect can make the journey smoother. This is just like a marathon- no one turns up to to the race, not knowing where the start line is, how far the race is, or never having been for a run before! Preparation is key- both mentally and physically.

At Matilda, we believe endometriosis care should be patient-centered, holistic, and empowering. If you’re preparing for surgery, we hope this guide helps you feel more confident and supported in your journey.