When youâve been living with pelvic pain for months-or years-and every doctor tells you itâs just stress, or a UTI, or something youâll grow out of, you start to wonder if itâs all in your head. Itâs not. For millions of women, chronic pelvic pain isnât a one-off issue. Itâs two overlapping conditions hiding in plain sight: endometriosis and interstitial cystitis. Theyâre often called the âevil twinsâ of pelvic pain because they look so similar, feel so similar, and get misdiagnosed so often.
What Exactly Is Endometriosis?
Endometriosis happens when tissue that looks and acts like the lining of your uterus-called endometrium-grows outside the womb. It can cling to your ovaries, fallopian tubes, bowel, bladder, or even your diaphragm. This tissue still responds to your monthly hormones. It thickens, breaks down, and bleeds⌠but it has no way out. That trapped blood causes inflammation, scar tissue, and severe pain.Itâs not just bad cramps. About 92% of women with endometriosis feel pain that gets worse during their period. Some describe it as sharp, stabbing, or like being cut open from the inside. Pain during sex, bowel movements, or even urination is common. And itâs not rare: 1 in 10 women of reproductive age have it-thatâs about 190 million women worldwide.
The only way to definitively diagnose endometriosis is through surgery. A laparoscopy. A small camera is inserted into your abdomen, and if they see lesions, they take a biopsy. Thatâs the gold standard. But hereâs the problem: most doctors wonât recommend this unless youâve already tried everything else. And even then, many surgeons arenât trained in deep excision-the technique that actually removes all the tissue, not just the surface. Only about 15% of OB/GYNs in the U.S. have that level of training.
What Is Interstitial Cystitis?
Interstitial cystitis (IC), also called painful bladder syndrome, is a chronic condition where your bladder becomes inflamed and overly sensitive. Thereâs no infection. No cancer. No clear cause. But the pain? Very real. You feel pressure, burning, or stabbing in your pelvis, especially as your bladder fills. You need to pee constantly-sometimes 10, 15, even 20 times a day. And when you do, it hurts.Unlike endometriosis, IC doesnât show up on scans or blood tests. Doctors have to rule everything else out first: UTIs, kidney stones, bladder cancer, sexually transmitted infections. Only after all those are excluded can they consider IC. The diagnosis often relies on a test called the Potassium Sensitivity Test (PST), which checks how your bladder reacts to a potassium solution. About 80% of people with IC react strongly-but 20% donât. That means you could still have it even if the test is negative.
Bladder capacity is another clue. A healthy bladder holds 400-600 mL. Women with IC often max out at 300-400 mL, and they feel pain long before that. A questionnaire called the PUF scale (Pelvic Pain and Urgency/Frequency) helps doctors judge severity. A score of 8 or higher strongly suggests IC.
Why Do These Two Conditions Get Mixed Up?
Because their symptoms are nearly identical. Both cause:- Chronic pelvic pain
- Painful urination
- Frequent urination
- Urinary urgency
- Pain during sex
But hereâs the key difference: endometriosis pain follows your cycle. It spikes before and during your period. IC pain? Itâs more constant. Sure, some women with IC feel worse around their period-about 45% do-but it doesnât follow the same rhythm as endometriosis.
Another clue: blood in the urine. If you see even a little pink or red when you pee, itâs more likely to be endometriosis affecting your bladder-about 20-30% of bladder endometriosis cases show this. In pure IC, blood in the urine is rare-under 5%.
And hereâs the most shocking part: a 2011 study of 178 women with chronic pelvic pain found that 65% had both conditions at the same time. That means if youâre diagnosed with one, you should be tested for the other. Yet most doctors still treat them as separate, unrelated problems.
Why Diagnosis Takes So Long
On average, women wait 7 to 10 years to get a correct endometriosis diagnosis. For IC, itâs 3 to 5 years. Why so long?First, doctors donât always know what to look for. A 2022 survey found only 25% of primary care doctors routinely screen for pelvic floor dysfunction-a problem present in 92% of women with either condition. Second, insurance often denies the tests. Cystoscopy and laparoscopy are expensive. In the U.S., a laparoscopy can cost $5,000 to $15,000. Many insurers make you jump through hoops before approving them.
Third, thereâs still a lot of medical gaslighting. A 2023 survey of 850 IC patients found 76% were told their pain was âall in their head.â One Reddit user, u/PelvicPainWarrior, waited nine years before her laparoscopy revealed stage IV endometriosis. Sheâd been diagnosed with IC, treated for UTIs five times, and prescribed antidepressants for âanxiety.â
And itâs worse for women of color. Black women wait an average of 11.7 years for an endometriosis diagnosis-four years longer than white women.
What Happens When You Get the Right Diagnosis?
Getting the right diagnosis changes everything. A 2022 review of 342 women with both conditions showed that 63% saw major improvement when they got treatment for both-not just one.For endometriosis, deep excision surgery is the most effective treatment. It removes all visible lesions, not just the surface ones. Many women report their pain drops by 70-90% after surgery. If endometriosis is on the bladder, removing it often fixes the urinary symptoms too. One user on Reddit, u/BladderWarrior, said after her third surgery found bladder endometriosis, her urinary pain dropped by 80%.
For IC, treatment is more about managing symptoms. Dietary changes (cutting out caffeine, alcohol, spicy foods, citrus), pelvic floor physical therapy, bladder instillations (medication put directly into the bladder), and medications like pentosan polysulfate sodium (Elmiron) are common. But Elmiron has risks-long-term use can damage the retina. The FDA has warned about this, and lawsuits have followed.
The best approach? Treat both conditions at once. If you have IC symptoms, get a laparoscopy. If you have endometriosis, get your bladder checked during surgery. Thatâs the new standard recommended by the International Pelvic Pain Society since 2023.
Where Do You Go From Here?
If youâre struggling with pelvic pain, hereâs what to do:- Keep a symptom diary for at least 2 weeks. Note when pain happens, how bad it is, what triggers it, and your urination patterns.
- Ask your doctor for a pelvic floor exam. Tight, painful pelvic muscles are common in both conditions.
- Request a urine test to rule out infection.
- If symptoms persist, ask for a referral to a urogynecologist or endometriosis specialist-not just a general OB/GYN.
- Insist on a laparoscopy if you suspect endometriosis, even if youâve been told you have IC.
- Join a support group. The Endometriosis Foundation and Interstitial Cystitis Network have active communities where women share real experiences and doctor recommendations.
This isnât about being dramatic. Itâs about being heard. Your pain is real. And you donât have to live with it for another decade. The tools to fix this exist. You just need to find the right doctor-and ask the right questions.
Whatâs Changing in 2025?
New research is shifting how we see pelvic pain. The NIH just awarded $4.2 million to the University of Michigan to find biomarkers that can tell endometriosis and IC apart without surgery. In January 2024, the Endometriosis Foundation updated its surgical guidelines to require bladder evaluation during every endometriosis operation.By 2030, experts predict multidisciplinary pelvic pain centers will be the norm-where gynecologists, urologists, physical therapists, and pain specialists work together. Thatâs the future. And itâs coming faster than most people realize.
Can endometriosis cause bladder symptoms?
Yes. Endometriosis can grow on or into the bladder wall, affecting 1-12% of people with the condition. When it does, it causes frequent urination, pain when the bladder fills, blood in urine, and urgency-symptoms that mimic interstitial cystitis. During surgery, surgeons now check the bladder as part of routine endometriosis excision.
Is interstitial cystitis just a UTI that wonât go away?
No. While IC symptoms feel like a chronic UTI, tests never show bacteria. Antibiotics donât help. IC is a chronic inflammation of the bladder lining with no known infection. Itâs often misdiagnosed as recurrent UTIs-63% of IC patients are told they have UTIs before getting the right diagnosis.
Why do so many women get misdiagnosed with IC instead of endometriosis?
Because IC is easier to test for-on paper. Itâs a diagnosis of exclusion, meaning doctors check off other conditions first. But laparoscopy for endometriosis requires surgery, which is expensive and often denied by insurers. Many doctors default to IC because itâs less invasive to diagnose-even though studies show up to 80% of IC diagnoses are actually undiagnosed endometriosis.
Does pelvic floor therapy help with both conditions?
Yes. Pelvic floor dysfunction is present in 92% of women with either endometriosis or IC. Tight, overactive pelvic muscles can worsen pain, urgency, and sexual discomfort. Physical therapy that teaches relaxation and release techniques can reduce pain significantly-even when the underlying condition remains.
Should I get a laparoscopy if Iâve already been diagnosed with IC?
Yes, if your symptoms donât improve with IC treatment or if you have cyclical pain tied to your period. Studies show a large number of women with IC have hidden endometriosis. A laparoscopy can reveal lesions that were missed, and removing them often resolves urinary symptoms entirely. Donât accept a diagnosis without ruling out endometriosis.
Fern Marder
This is so real đ I waited 8 years and got told I was âanxiousâ until I found a surgeon who actually listened. Now Iâm pain-free. Donât let them gaslight you.
John Biesecker
man i just found out my sister has both and sheâs been through hell. they gave her antidepressants for 3 years before even looking at her pelvis. the system is broken. đ¤Śââď¸
Elizabeth Farrell
Iâve been doing pelvic floor PT for 14 months now. It didnât cure my endometriosis, but it cut my daily pain by 60%. I didnât believe it at first - thought it was just âstretchingâ - but the muscle release work? Game changer. If youâre in pain, find a certified womenâs health PT. No joke.
Also, track your food. I cut out citrus and caffeine and my bladder stopped screaming. Itâs not magic, itâs physiology. Your bladder has nerves, not a personality.
And yes, laparoscopy should be routine if you have IC symptoms. Why are we still pretending this is a âguessing gameâ? We have tools. Use them.
I used to think I was weak because I cried during sex. Turns out, I had lesions on my uterosacral ligaments. Thatâs not âstressâ. Thatâs anatomy.
My doctor didnât even know what âdeep excisionâ meant. I had to bring him a paper from the Endometriosis Foundation. Thatâs not my fault.
Women are not âdramaticâ. Weâre just tired of being told to take a warm bath and breathe.
My mom said âall women have crampsâ. Iâm 34. Iâve had pain since I was 15. Thatâs not normal. Thatâs not âpart of being a womanâ. Thatâs a disease.
Iâm not asking for pity. Iâm asking for action. The data is here. The expertise is here. The will? Not so much.
But weâre changing it. One laparoscopy at a time.
If youâre reading this and youâre in pain - youâre not alone. And youâre not crazy. Keep pushing. Find your person. Your surgeon. Your PT. Your tribe.
Iâm still healing. But now Iâm healing with tools. Not just hope.
ruiqing Jane
Thank you for writing this with such precision. The 2023 ISPP guidelines are finally being adopted in some academic centers, but community hospitals? Still stuck in 2005. Iâve trained 12 residents this year alone on bladder mapping during excision. Itâs slow, but itâs happening.
Allan maniero
Iâm a guy, and honestly, I didnât understand any of this until my wife went through it. I thought pelvic pain was just âbad periodsâ. Turns out, itâs a whole other level of suffering that no one talks about. Iâve read every study, joined every forum, and now Iâm basically a mini-expert. If youâre a woman reading this and you feel dismissed - I believe you. And Iâm sorry it took this long for anyone to listen.
Also, the part about Black women waiting longer? Thatâs systemic. And itâs not just about access - itâs about bias. Iâve seen it in the ERs here in London. Pain scales are ignored if youâre not white. Itâs disgusting.
But the fact that weâre finally talking about biomarkers and multidisciplinary centers? Thatâs the future. And itâs beautiful.