• Jillian Lentini

Be Your Own Advocate

When I was 20 years old, I was getting up multiple times a night to pee and sex was at times painful, and generally felt like my bladder and vagina were on fire.

I went to a urologist and they had me see the Physician Assistant who did a quick pee test to make sure I was voiding all the way, and she put me on overactive bladder medicine to help me go less. Well seeing as how that’s now what I had, go figure it didn’t work, so I had to see the Dr. in the practice to do additional testing.

They made me an appointment for me at the hospital to have what’s called a cystoscopy with a bladder distention. They basically stick a hose with a small camera head up your urethra (pee hole) and take a peek at your bladder lining and then fill your bladder up like a balloon as much as they can with liquid. This is the distention part. This was done with zero anesthetic. I was alone in a hospital room with a nurse and the doctor being tortured by a sadistic asshole. I should have known he wasn’t an ethical doctor when even the nurse looked uncomfortable with what he was doing and saying as he seemed annoyed at my discomfort.

After this shit show of a procedure, he sat down with me and my now husband and told me he is pretty sure I have something called Interstitial Cystitis. It’s basically where the bladder lining isn’t quite there and instead of being nice and smooth is full of cracks and fissures. (pretty sure he didn’t actually tell me any of that just the name of what I had) He told me I would feel some discomfort later and to just drink water at home. He sent me home with an anti-depressant which at the time was not the recommended drug used to treat what I had. He then told me not to go looking it up on the internet and that the best thing to do was ignore it.

Sure buddy, you ignore burning every time you piss, or being tired all the time because you wake up 5-6 times every night to pee at 20 years old. Oh and mild discomfort no sir, it was not mild. It felt like I was pissing knives after what he did to me. My only regret was not filing a formal complaint against this unethical hack.

So I take the stupid pills don’t question him because he is the doctor right, he went through all of that schooling so must know best or what he was doing. That must be how it is.

The pills sucked, made me even more tired, and honestly didn’t do shit for the symptoms. He basically gave me sleeping pills so I would get up less. Didn’t get up less, just got up more groggy like in a haze trying to pee at night. Sex was still painful and my bladder was still in pain.

I end up saying fine, and tried to ignore it and accept my reality for well over a year until I couldn’t take it anymore. I decided to get a second opinion. She was wonderful and did additional diagnostic testing. No painful procedures, no lack of explanation, but a doctor who cared and listened.

I then end up getting a third opinion in the same office mostly because she recommended the doctor in her office that specialized in what I had and was up on the latest research and treatments. He recommended another bladder distention. I remember the fear of going through all of that again. However, when I told him how I had one before his eyes got really big and was like no we will take care of you. You will not be awake or uncomfortable and I can’t believe they didn’t do that. Instant relief.

He did the procedure, took pictures, showed them to me, and explained that this should help my symptoms at least for a short time. I left the hospital afraid to pee again because I didn’t want to piss out razors like last time. Oddly, ZERO discomfort. NONE. Actually, it was the opposite. I FINALLY had some relief and at this point probably on year 3.

I stayed with him for a few years and did all the protocols he gave me like directly injecting myself with my medicine and some lidocaine into my bladder with a catheter at home. The only reason I stopped was because I wanted to get pregnant. I didn’t question any of his advice or prescriptions because again, don’t question doctors they know best. Do what they say.

I then had fertility issues. We did the see your OB first route then the fertility cycle route with shots and hormones and direct insemination with a miscarriage in the middle.

During my pregnancy, every time I got sick, I had visible blood in my urine. So after she was born and I had a new normal, back to the urologist I went. Only this time, they said yeah I think this is not your bladder, but your kidneys. Off to the Kidney doc I went.

My first kidney doctor was arrogant and knew everything.

I had the biopsy and it was confirmed. I have IGA Nephropathy. It’s a kidney disease that causes too much protein to spill out damaging the kidney over time. Protein and blood should flow through them not leak out. They are like little filters so when it leaks out, they essentially get clogged. I was now 27 years old and another doctor wants me to take a medicine. A blood pressure medicine for perfect blood pressure to treat my kidneys. And once I start it, I am on it the rest of my life. If I want to have more babies can’t take it, it has complications.

At this point, I started questioning things. Questioning why my body was malfunctioning and around this time, also learn I also have Celiac Disease which means my gut wasn't healthy and absorbing nutrients my body needs to have all my organs functioning optimally.

This was where my health started to turn around and I began to advocate for myself.

I asked him to give me a month and retest me. I told him I had Celiac and he said yeah my wife and daughter have it too but there is no connection. You can go off gluten but it won’t help what you have. Based on my research no causation but there is a correlation.

This was my first push back with a doctor. My gut was off, my numbers weren’t you are in failure and have to do this now. But high enough to respond, low enough to bide some time. I was not comfortable with here take this pill for something you don’t have for the rest of your life. I wasn’t comfortable with treating one system to help another. In this case my cardiovascular system to help my kidneys when cardiovascular was all in optimal range. It just didn’t make sense. My fear was saying take them, my gut and head were screaming no this was wrong.

Something was wrong. So I went off all gluten for a full month and made some additional nutritional and lifestyle changes. I went back and had my numbers retested and my numbers were in all in normal range. He didn’t concede that it was my diet but just oh yeah let’s retest in a year and keep doing what you are doing no need for pills yet.

I no longer see him but am on my third kidney doctor that is wonderful and listens. I push back quite a bit and he is willing to go along with me as long as I am maintaining my health markers which I have been for close to 20 year at this point. It’s a fun exchange and he listens but also advises.

YOU have every right to advocate for yourself and find the doctor that fits and gives you the care you need and deserve. This is not a take no medications at all cost advice. Not at all. Do NOT just stop taking your current medications willy nilly. But you should know what you are taking, why, and why it’s important.

And what is your doctor’s plan to get you off it?

Are they treating what you have? Or the symptoms of what you have? Those are two different things.

Just like all coaches and hairstyles aren’t the same, doctors aren’t any different.

Some are great, you click and will never leave them, and then some leave you with some skunky ass highlights or tiny calves.

Not all doctors suck. Quite the opposite. I know many who are wonderful and amazing and will move mountains to help get their patients healthy. My current kidney doctor is wonderful. But I have advocated for myself and refused to just accept something because someone with letters next to their name told me to.

Be prepared. Write all your questions down before you get there, bring them with you. Make sure they are answered.

Getting blood work done? Ask what your results mean. Cool if they are in range, are they optimal? Can they answer that?

Be your own advocate. Ask questions, push back, and fire the ones that suck and find ones that don’t. Sometimes it takes 2 or more tries to find the right one, but your health care is worth it.

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