Could It Be Interstitial Cystitis?
I have pain during sex and I have stop to go pee at least twice. I also have to urinate up to twenty times a day and as soon as my bladder begins to fill, it feels like someone is pressing down on it. My bladder hurts at night and keeps me awake and it also hurts in the morning. The pain is always worse in the lead up to my period and can sometimes feel like endo pain by the time my period arrives.
Does that sound familiar to you? If it does, it might not just be endometriosis that’s to blame.
Endo & the bladder
After my endometriosis diagnosis, I believed that the issues I was having with my bladder was down to endo. The pain around my period had gone, but my bladder still hurt. It felt extremely sore inside and after I went to the toilet, I could almost still feel the outline of where it had stretched to – it was as if there was an echo of pain surrounding my bladder, telling me I stretched it too far, even if I went to the toilet as soon as I felt the need to.
Some nights, I couldn’t sleep because of the pain, or it’d wake me up and keep me awake for hours at a time. The pain wasn’t excruciating, but it was strong and persistent, like a burning flame inside me instead of a bladder. I had no pain on passing urine, it didn’t burn or sting and it wasn’t like the usual cystitis feeling – but something wasn’t right.
There was also the issue of how much I needed to urinate. It was and still is, endless. I can’t truly go even an hour without my bladder feeling full and my nights are often disrupted by toilet trips – even sex is a trigger! I thought that when my second surgery came round, I’d have answers. I was convinced I had endo on the bladder, but it was endo-free. So, what was going on?
The answer came to me months later, when I was interviewing Heather Crosby, about how she healed the pelvic pain she experienced, caused by a chronic condition called interstitial cystitis or painful bladder syndrome. As she spoke, my symptoms clicked into place, one after another – they were exactly the same.
I’d done some research prior to the interview and had also discovered that the medical community dubbed IC as "the evil twin of endometriosis"1 and that it was 4.4 more likely to develop in those with endometriosis2.
What is IC?
Interstitial cystitis is characterized by bladder pain or pressure, frequent urination and sudden urges, worsening pain in the lead up to menstruation, and heightened pain after specific foods. It’s still a misunderstood disease, much like endometriosis, and they’re not 100% sure what causes it. Theories range from blisters lining the bladder wall, allergic reaction, and attack from the immune system. From my experience of the pain, my money’s on the blisters.
Since being diagnosed, I’ve been able to somewhat reduce my symptoms. I still have issues with bladder pressure and frequency, but the pain has lessened. I eliminated some of the key triggers, including oranges, tomatoes, and coffee. These three seemed to be my main culprits, but I do sometimes get mystery pain I’m yet to account for. There is a specific diet for interstitial cystitis, but it’s quite a long list and requires trial and error and elimination to know for sure.
If this sounds like you, I really urge you to seek support. You don’t have to suffer in silence.
Do you know what your endometriosis phenotype is?