Pelvic Pain in Women: Understanding Endometriosis and Interstitial Cystitis

Finnegan O'Sullivan Nov 14 0

For many women, pelvic pain isn’t just a bad day-it’s a daily reality. It shows up when you’re trying to sleep, during sex, while peeing, or even sitting at your desk. And too often, doctors tell you it’s "all in your head." If you’ve been told you have interstitial cystitis (IC) or endometriosis, but nothing seems to help, you’re not alone. In fact, these two conditions are so often mixed up-or missed entirely-that many women wait years just to get the right diagnosis. The truth? You might have both.

What You’re Really Feeling

Pelvic pain from endometriosis and interstitial cystitis doesn’t feel the same for everyone, but the overlap is terrifyingly common. Both cause pain in the lower belly, pressure in the bladder, frequent urination, and pain during sex. The big difference? Timing.

Endometriosis pain usually spikes around your period. If your pain gets worse right before or during menstruation, that’s a strong clue. You might also notice pain during bowel movements or when you’re ovulating. Some women even bleed from their bladder during their period-that’s bladder endometriosis, and it happens in up to 12% of cases.

Interstitial cystitis, on the other hand, doesn’t follow your cycle. The pain is constant, but it can flare up after eating spicy food, drinking coffee, or being stressed. Your bladder might feel like it’s on fire, even when it’s not full. You might go to the bathroom 10 times a day and still feel like you need to go. And no, it’s not a UTI. Antibiotics won’t help.

Why It’s So Hard to Diagnose

There’s no blood test for endometriosis. No scan, no X-ray, no urine sample that says "yes, you have it." The only way to confirm it is through surgery-laparoscopy-where a surgeon cuts into your abdomen, looks for lesions, and removes them for testing. It’s invasive. It’s expensive. And it’s not always covered by insurance.

Interstitial cystitis is even trickier. There’s no single test for it. Doctors have to rule out everything else first: infections, bladder cancer, sexually transmitted diseases, even kidney stones. They might do a cystoscopy, where a camera goes into your bladder, or a potassium sensitivity test, which checks how your bladder reacts to certain solutions. But even then, the test misses up to 20% of cases.

And here’s the kicker: if you have endometriosis, you’re four times more likely to also have IC. A 2011 study of 178 women with chronic pelvic pain found that 65% had both. Yet, most doctors still treat them as separate problems. That’s why so many women get misdiagnosed. One woman on Reddit spent nine years being treated for IC before surgery revealed stage IV endometriosis on her bladder wall. Her urinary symptoms? They dropped by 80% after the lesions were removed.

The Real Culprit: Pelvic Floor Dysfunction

Here’s something most people don’t talk about: pelvic floor muscles. In 92% of women with either condition, those muscles are tight, painful, and stuck in constant contraction. It’s not just a side effect-it’s part of the problem. When your bladder or uterus is inflamed, your body protects itself by clenching the surrounding muscles. Over time, those muscles become hypersensitive. They start hurting even when there’s no active disease.

That’s why physical therapy can be life-changing. A pelvic floor therapist doesn’t just stretch-you learn to relax muscles that have been screaming for years. Many women report feeling relief after just a few sessions, even before any surgery or medication. But finding a good therapist? That’s another hurdle. There are only about 350 board-certified urogynecological physical therapists in the entire U.S.

What Treatment Actually Works

There’s no magic pill. But there are real strategies that help.

For endometriosis, excision surgery-where the lesions are cut out, not burned-is the gold standard. Ablation (burning) leaves tissue behind and leads to recurrence. Only about 15% of OB/GYNs in the U.S. are trained in excision. If your doctor doesn’t mention it, ask. And insist on a biopsy. Don’t let them say "it looks like endometriosis"-you need proof.

For IC, the FDA-approved drug Elmiron used to be the main option. But recent studies show it can cause serious eye damage in up to 23% of long-term users. Many doctors now avoid it. Instead, they use bladder instillations-medication dripped directly into the bladder-or dietary changes. Cutting out acidic foods, caffeine, alcohol, and artificial sweeteners helps up to 70% of patients.

But here’s what really works: combining treatments. A 2022 review of 342 patients with both conditions found that 63% saw major improvement when they got surgery for endometriosis and pelvic floor therapy for IC. One woman in Sydney, after five years of pain, had laparoscopic surgery, started physical therapy, and eliminated gluten and sugar. Within six months, her pain dropped from an 8/10 to a 2/10.

How to Get Proper Care

Start with a voiding diary. Write down every time you pee, how much, and how much pain you feel. Note what you ate, your period dates, and stress levels. Bring it to your doctor. It’s the best tool you have.

Demand a referral to a specialist. Look for a gynecologist who does deep excision surgery. Find a urologist or urogynecologist who treats IC. You can search through the Endometriosis Foundation or the Interstitial Cystitis Association-they have directories.

If your insurance denies cystoscopy or laparoscopy, appeal. A 2023 survey found 44% of women had initial denials. But with the right documentation-your diary, your symptoms, your history-many get approved on the second try.

And if someone tells you it’s "just stress" or "you’re anxious"? Walk out. You’re not imagining this. The science is clear: these are real, physical conditions with real biological markers.

What’s Changing

The medical world is finally waking up. In February 2024, the NIH gave $4.2 million to research biomarkers that can tell endometriosis and IC apart without surgery. The Endometriosis Foundation now requires bladder checks during every excision surgery. And in 2023, the International Pelvic Pain Society launched a new protocol: every woman with chronic pelvic pain gets evaluated by both a gynecologist and a urologist at the same time.

By 2030, experts predict multidisciplinary pelvic pain centers will be the norm-not the exception. That means fewer years lost to misdiagnosis, fewer women told they’re crazy, and more women getting real relief.

What You Can Do Today

- Write down your symptoms for one week. Include timing, triggers, and intensity.

- Ask your doctor: "Could I have both endometriosis and interstitial cystitis?"

- Request a referral to a pelvic floor physical therapist.

- If you’re being treated for IC and nothing works, ask about laparoscopy.

- Join a support group. The Endometriosis Foundation and Interstitial Cystitis Network have active communities.

- Don’t accept "we don’t know" as an answer. You deserve answers.

This isn’t about being strong. It’s about being heard. And you’re not alone.