personal and possibly triggering!

In July, I went to City MD because I knew I had a UTI. Was given antibiotics and sent home.

Here we are in December. I am still feeling like I have a horribly painful, debilitating UTI.

I have been to five doctors now. All of them said my UTI was gone based on their tests. They threw lots of possibilities at me, but the one that came up most was interstitial cystitis.

Never heard of it? Neither had I. I researched, finding footnotes on urology journals and many online support groups. It is a diagnosis of exclusion, where women have severe UTI symptoms but no infection. There is no cure, only treatments aimed at reducing symptoms, which the options are ineffective and un-researched. The bladder is essentially on fire, 24/7. “Exercise” like climbing stairs and standing too long makes it worse. So does stress. There is a strict diet, cutting out caffeine, alcohol, citrus fruits, anything processed, spices, salt, pepper, soy, and more. The pain is piercing, deadening, shocking. Many of these women cannot work, move easily or function day to day. There is a high risk of suicide and suicide attempts among these patients.

I cannot describe the intense fear this caused me. That this was an incurable, horrifying condition I would live with for the rest of my life, and there was no cure, and no treatment that had even a mildly good probability of working.

Many doctors didn’t think I had this. They said I was too young. But none of them could offer up any conceivable diagnosis for me otherwise. I told them it hurt to exercise, it hurt the day after drinking coffee and alcohol, it hurt to do anything at all. 

Essentially, the response was a shrug. “Well, you’re healthy, so maybe go to yoga,” one of them told me. 

They confirmed there wasn’t much to do if I had IC. There are several medications that sometimes reduce symptoms, one of which is being investigated as it might cause blindness. Bladder removal is an option.

Since I couldn’t get answers from my doctors, I continued looking. I talked with women on various IC support groups, trying to convince myself this isn’t what I had. But all of them had begun with similar stories. They thought they had a UTI. They were told they didn’t. It got worse and worse. Many are housebound. Doctors are unsympathetic. Families often don’t believe them. Many had their partners leave them. “I wish this disease was fatal,” one of the posts said. “At least then people would know I was telling the truth.”

My mental health deteriorated. I couldn’t think of anything else but the future that was dead to me. I isolated myself from friends. When you are told by a doctor you have a condition in which you will always be in pain and always in discomfort, barring you from the future you’ve always wanted to have, life does not seem worth it. 

But I know exactly what kept me moving, and not giving into the physical and mental pain. It wasn’t any mental resilience. It had nothing to do with inner strength. I was just horribly unlucky to know exactly what it meant if that mental debilitation broke me down. I went through it, in January of this year. I saw exactly how it shattered my family. I knew if I kept losing my mind the way I was, what it would do to my mom, to my dad, to my brother. To everyone.

And I was lucky to have parents who would tell me every day that we would go to the ends of this earth and beyond to find something that helped me. I was lucky to have a boyfriend who supported me every step of the way, even when the pain made me lose my mind and act not at all like myself. 

And... I’d like to believe I had an angel or two looking out for me. Specifically one with a Batman shirt. 

So I kept looking, I kept researching. And I found something hidden in the middle of an online support group. It was a woman from Vancouver who said that her “IC” had turned out to be a deeply embedded UTI that was coming up negative on cultures. She went from being in a wheelchair, to being 80% healed on long-term antibiotics.

Armed with something, I kept looking for similar stories, and found a professor in London who had a 80% success rate healing people with UTI symptoms. It turns out that 50% of negative UTI tests are actually incorrect. 50% of women are being told that they don’t have a UTI, but they do.

The reason, beyond the simple ineffectiveness and flaws of this test, is partly because bacteria is learning, and beginning to hide in the walls of the bladder when someone is prescribed an incorrect type of antibiotic or a round of antibiotic that is too short. Then the antibiotics won’t touch them. They become embedded. But you, the patient, still feel wildly uncomfortable and in pain, despite the negative tests. 

This professor in London, as well as his growing community, doesn’t look at these tests. Instead, he just listens to the patient. “Treat the patient, not the dipstick,” he is known to insist. He double checks by looking directly at the sample immediately after its provided, looking for white blood cells, which show the body is fighting infection. Almost always, people who have been previously diagnosed with interstitial cystitis, are shown to have high white blood cell counts, proving definitely that yes, they’re sick, and they need help. 80% of his patients have found relief with his treatment. Hundreds followed him on Twitter, constantly thanking him for giving them their lives back. 

So... I went to London. 

Fearing the worst, and feeling like an insane person to fly to another country to figure out what was wrong with me, I barely told anyone what I was doing. But my mom insisted if I was going, she was coming. And I had the support of my entire family behind me. “Whatever happens,” my parents kept saying, “we will figure it out.”

I just got saw a doctor at the professor’s clinic. The answer is yes, I have a UTI. 

I started crying as soon as she said it. The months and months of pain, of doctors saying conflicting diagnoses, on one hand that I was completely healthy, and on the other that I might have this condition that would cause me debilitating pain for the rest of my life... and it turns out I was right from the start. The infection never left.

This is going to be a long road to recovery. I will have to be on antibiotics for several months, and I know that I will not immediately start to feel better - I might actually start to feel worse while initially on the medication. But I compare the way I feel right now, armed with hope and a treatment plan, to the days I spent curled up in bed with a heating pad, crying into the pillow, and wow do I feel great. 

There are millions of women who have been diagnosed with an incurable condition that dictates they will live in pain forever. I am firmly under the belief that this condition has been created simply because “woman in pain” is simply not an issue to the medical community. The fact that millions of women get UTIs every day and bacteria is becoming resistant to antibiotics is not a public health epidemic, but rather an interesting factoid on the back of the New York Times. The fact that the dipsticks and cultures used for UTI tests are proven to be clinically ineffective, and yet doctors continue to diagnose patients with IC without firmly ruling out infection, is a horror I cannot understand. 

In the end, it was not the doctors who helped me. I helped myself, and I was helped along by the incredible women I have met the past few months who have also taken their treatment into their own hands when doctors were dismissive, patronizing, and downright hostile as their patients cried with pain in their offices. And of course, helped along by the incredible support system I have. Not every parent would drop everything, or have the means to do so, to help their daughter get to London for a doctor’s appointment. I am extraordinarily lucky.

Look up interstitial cystitis. Try to imagine that a doctor told you that’s what you have, or that your sister has it, or your girlfriend. Feel that gut-wrench? That moment your heart stops? That feeling of no, no, no. 

Remember that feeling. Understand that millions of women are living with it every day, without access to help. Look up Professor James Malone-Lee. Follow him on Twitter. Retweet him. Spread the word. He has the answer, and people aren’t listening. 

I promised myself, if I figured this out, I wouldn’t shut up about it. I would spread the knowledge far and wide, and never fall back into that black hole ever again. So this is me, doing just that.