My IC Story (IVF, Endometriosis, flares, and what’s helped me)

Hello hello everyone :) — I thought I’d finally share my story after being a very active reader of r/interstitialcystitis and reading other people’s posts has helped so much

In May 2025, I went through unsuccessful IVF treatment. After that, I developed significant bladder issues and pelvic pain that escalated quickly including multiple hospital stays.

For most of 2025, I wasn’t able to work because the pain was so severe. I went through ultrasounds, MRI scans, and a colonoscopy and eventually, I was diagnosed with Interstitial Cystitis by the urogynaecology team. Alongside this, they also found Endometriosis, Ovarian cysts, Hypermobility in my hips and unrelated (or is it?!) I have an ADHD diagnosis

In November, I had endometriosis removed privately. Even though not much tissue was removed, I felt hugely better almost immediately.

I went through a period of much reduced bladder pain. I stopped taking the Hiprex and 3 weeks I’m currently in the middle of a horrendous flare. This flare has been going on for over two weeks possibly triggered not only by stopping Hiprex, reducing antidepressants but also going on a holiday that included a 9‑hour flight and a lot of swimming...

Things that have helped me

- Diclofenac suppositories — the only pain relief that truly touched the pain

- Heavy microwave heat pads

- Massages to glutes / piriformis

- Medications that seem to help:

- Mirabegron

- Hiprex

- Laxatives (constipation makes everything dramatically worse)

Things that didn’t work for me

- Electric heated blankets (not hot enough)

- Anything that causes constipation — codeine was bad bad bad for me

- TENS machine (I accidentally shocked myself and never trusted it again)

- Amitriptyline — made me drowsy and didn’t help nearly as much as Mirabegron

Things I’m trying right now (mid‑flare)

- Pregnancy pillow to keep hips supported

- Electrolyte drinks — I feel constantly dehydrated and dizzy and can’t stop weeing

- Chinese medicine acupuncture (starting tomorrow)

- Increasing anxiety medication

- Douching

- Tai Chi videos

I’ve also noticed my allergies have gone haywire recently — I’ve switched from cetirizine to desloratadine — and I’ve had intense thirst and extremely dry lips, which feels oddly connected to everything else.

I’m currently reading The Interstitial Cystitis Solution as well.

My symptoms (beyond “classic” IC)

- Pain is usually okay in the morning until my first wee, then the cramps start

- Dizziness / lightheadedness, feeling spaced out

- Cramping in one groin that radiates down my leg

- Started after hormone treatment, gets worse during Ovulation

- Pain in pelvis around Ovulation actually started 7 years ago after Ectopic pregnancy resulting in ruptured fallopian rube

Thanks? X.