Episode 125: What Is Interstitial Cystitis?
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Interstitial cystitis and bladder pain syndrome are often misunderstood by doctors, leading to frustration and inadequate treatment for a lot of women.
I’m joined by Dr. Theoharis Theoharides, a renowned expert in clinical immunology. Dr. Theoharides brings his extensive knowledge and experience to our discussion on how women can manage these conditions for better health.
Together, we explore the symptoms and diagnostic challenges of interstitial cystitis and bladder pain syndrome, including the role of mast cell activation and the impact of stress.
Dr. Theoharides shares his expertise and gives us practical advice on supporting and enhancing the health of those dealing with these challenging conditions.
Tune in to the Fast Metabolism Matters Podcast – What Is Interstitial Cystitis?
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Dr. Theoharis C. Theoharides is a prominent professor at Nova Southeastern University (NSU) and previously at Tufts School of Medicine. His research focuses on neuroinflammation, particularly the role of mast cells in conditions like autism spectrum disorder, chronic fatigue syndrome, and Long-COVID syndrome. With numerous awards, over 486 publications, and 37 patents, Dr. Theoharides is a leading expert in his field. He has also developed unique supplements containing flavonoids to promote health and wellness.
LinkedIn: https://www.linkedin.com/in/theoharis-theoharides-ms-phd-md-faaaai-67123735
Transcript Below:
Haylie Pomroy: I'm Haylie Pomroy, #1 New York Times bestselling author of the Fast Metabolism Diet. Today, we're going to talk about a very interesting subject, and one that a lot of my women friends comment on, question about, and deal with. We're going to talk about both interstitial cystitis and bladder pain syndrome, and a couple of other co-morbidities or things that go on along with it. Of course, I'm very thrilled to have a very dear colleague of mine, Dr. Theoharides. Dr. Theoharides is the Professor and Vice-Chair of Clinical Immunology and the Director of the Institute for Neuro-Immune Medicine in Clearwater. He's trained in allergy and clinical immunology from Yale University and the internal medicine at New England Medical Center. Dr. Harris, thank you so much for being here with me today. I can't tell you how many of my women friends and colleagues are excited that we're having this conversation.
Dr. Theoharides: It's a real pleasure. We will be talking about medical…
Haylie Pomroy: We have to do this, though, because we need solutions and answers and ideas. I want to start first with, can you help me define, because there's a lot of misinformation out there about interstitial cystitis and what a lot of people call bladder pain syndrome.
Dr. Theoharides: The term interstitial cystitis is really almost not the word because it doesn't really describe something specific, but it stuck over the years. Most of the patients are primarily women, do have also bladder pain or lower pelvic pain. This is why sometimes we call it interstitial cystitis/ bladder pain syndrome. We'll get into these in a second. But unfortunately, the symptoms are confusing, they coexist with symptoms that involve other organs. I'm sorry to say, many of our colleagues just don't believe that this is a real problem. And we already know similar approaches have unfortunately happened from chronic fatigue, fibromyalgia, etc.
Haylie Pomroy: A lot of women in our community talk about feeling medically gaslit over this issue. They feel like they go in and they talk to their practitioner about, pelvic pain. In our community, they talk about almost like a bladder on fire urgency, pressure with urination. They're tested for a UTI and they’re told everything's fine, go away, and go home. And it's frustrating. How can someone get an adequate diagnosis with this? I have a million questions to ask you and I'm gonna try and break it down into bite size. First, how would they get diagnosed?
Dr. Theoharides: The clinical appearance is pretty much what you said. It feels like I heard your doctor's touch. You go to your urologist and they’ll do a urine culture and you turn out to be negative. Many urologists will say, we'll give you some antibiotics. They’ll give you antibiotics for 2 weeks and nothing happens. You go back, we’ll give you other antibiotics for another couple of weeks, and nothing happens. The clinical diagnosis is pain frequency. It lasts about 2 to 3 months with no documented urinary bacteria growing or any other microbe growing.
Haylie Pomroy: Can they see anything if they ultrasound the bladder? Is it anatomically different?
Dr. Theoharides: No, they cannot. For many years, the National Institute of Health had supported very vigorously both basic science as well as clinical studies. And while I was at Tufts University, I was actually funded 3 times by the National Institute of Health and I participated in two very large clinical trials as well. Most urologists will actually do a cystoscopy in the old days.
Haylie Pomroy: What's that?
Dr. Theoharides: They put basically a tube inside the bladder and they look. Most of the time nothing is seen… This is why the National Institute of Health for Clinical and Basic Studies had requested that cystoscopy be done under general spinal anesthesia during which time the bladder is extended by putting in normal sailing. And the reason being is that if the bladder was extended, there were small hemorrhages showing up on the lining of the bladder. And that will be a telltale sign of interstitial cystitis. However, most urologists don’t know how to do that and it is also very expensive if you have to go under anesthesia. By the same token, by doing the simple cystoscopy in the old days, it turns out to be negative.
Haylie Pomroy: There are a lot of theories about this, and that's why I was excited to grab you and ask you for some true science around it. A lot of times, individuals that have a tendency to have a lot of allergies or food allergies or environmental exposures, this is a common symptom profile that we see in these patients. Why? What's the correlation?
Dr. Theoharides: I've called this and I've published almost 40 papers on this topic over the years. I've literally called this “an allergy of the bladder.”
Haylie Pomroy: Yes! An allergy of the bladder. But women that deal with this, they get told it's your eyes and the broken capillaries in your eyes, but you feel it in your pelvis.
Dr. Theoharides: But as we discussed in other episodes, the immune cells called the mast cells that are involved in allergens can also be triggered by substances that we’re not allergic to. That's why I try to avoid the word “Allergy of the bladder” I'd rather call it “Mast cell activation of the bladder” Having said that, we've published numerous times. In fact, the mast cells in the bladder are activated in this patient and in fact, the urologist in Europe do a biopsy of the bladder wall, it’s called the detrusor muscle. And if they see more than 30 mast cells per high power field, they do call it mastocytosis of the bladder. But they consider that a subcategory of your overall interstitial cystitis. That's fine. But this is one of the problems that my colleagues have been facing. What do we call mastocytosis? Because so far as we've discussed in other episodes, mastocytosis is considered only if it shows up on the skin or your bone marrow. What happens if it’s in your gut? Definitely gastrointestinal mastocytosis. Same idea, if it’s in the bladder, it’s bladder mastocytosis. But still, we cannot really biopsy in the United States. They will have to say that the muscles are…
Haylie Pomroy: If the mass cells are activated, that means that there's a lot of histamine in the tissues or histamine in the area?
Dr. Theoharides: Absolutely, yes. Not only histamine but many other mediators that sensitize nerve endings and that's why you get the sensation of pain. Which not actually publishing in this area until a few years ago because some of my colleagues had retired. It seems that other colleagues very recently have revisited the issue and now they say, yes, mast cell activation is very important in there.
Haylie Pomroy: We see it a lot and I think I understand the correlation, but I'd love your help in this. We see it a lot in women that are pre-menopausal and menopausal. And there is a significant change in hormones during that time. The class of hormones, prostaglandins change and the prostaglandins help to regulate inflammation also. Is it the hormone shift, or the lower estrogen? What's happening during that time period why do we see this so often?
Dr. Theoharides: Let me address this in different ways because especially the prostaglandins do not actually regulate. Let's keep that aside.
Haylie Pomroy: Correct me I love that because I sit around and wonder, I don't I have no idea. That's why I pull you in.
Dr. Theoharides: Prostaglandins actually are associated with good and bad things. We call it good prostaglandins and bad prostaglandins. Prostaglandin E, for instance, can be the good guys. They open up the bronchi and they protect the lining of the stomach so we don't get ulcers. Prostaglandin D and the Prostaglandin F are the bad guys. That's why in general, when I see your supplements being sold or, other podcasts, they just use general terms that really confuse everybody because they’re a little more complicated. Now let's talk about the fact that many patients do show up with what we call otherwise comorbidities. They might have allergies interest in general. They might have fatigue, not necessarily chronic fatigue, might have fibromyalgia, so they show up basically to the urologist because that's the most presenting symptom. And then they mention all the other symptoms. At the end of the day, they say you're crazy.
Haylie Pomroy: It's not necessarily just a bladder disorder. It's a systemic disorder that's manifesting in the bladder tissue?
Dr. Theoharides: Not quite. What we call interstitial cystitis is actually in the bladder or pelvis. It turns out so many other things seem to be happening at the same time. Then one wonders if the pathogenesis is actually broader than that. I agree with you from that point of view. But I wouldn't say they’re necessarily interstitial cystitis is a systemic. There are a few things that we absolutely have to make sure we do before we move forward. There are no objective markers, there's nothing you can measure in the blood so far that can tell you got actual interstitial cystitis. In fact, we're very interested in doing that. But since we know the allergic-like problem, so activation of the mast cells does participate, then addressing those would only do, actually good to the patient because we will be addressing those problems and indirectly potentially reducing the symptoms of interstitial cystitis. In addition, we know that stress is a major trigger, not the allergens. We’ve known it for chronic fatigue, and fibromyalgia. And it shows that the first hormone released under stress, though we thought it was released only in the brain. It is actually in the bladder. We've measured it.
Haylie Pomroy: What is it?
Dr. Theoharides: it's called Corticotrophin-releasing hormone (CRH). Unfortunately, it is not measured in clinical. We and other colleagues have measured in the bladder and shown that correlation actually was severe symptoms. Reducing stress however we can do that is really an absolute must. Now for that reason, because it's such a complicated problem. Last year just about this time, and as you actually sponsored the conference in Clearwater, where we had three of the best-known urologists. And I participated in it, we had about 90 or so participants. And what was amazing to me is that we sent out 500 emails and I could just by regular mail, every urologist in Florida invited them. It was actually free. Only one urologist actually joined. That tells us that to this day, still, urologist don't believe this is real.
Haylie Pomroy: Do you think that this is one of the, I don't know if we call it a syndrome or a disorder? This is one of the issues in our bodies that there's not great treatment for it. There's the medication, that is if you're diagnosed with it, the medication options from a pharmacological perspective has a ton of side effects. I wonder sometimes if it's like, we don't know how to solve the problem. We don't know what to script for for the problem. Then let's just kind of bury our heads in the sand and pretend like it's not a problem. It's much easier to tell a woman that, give her a macro bid, she doesn't have a UTI, do more Kegels. Read the chat rooms about this disorder. What women have been told is just so heartbreaking. But do you think some of it is because there's not a good drug that someone can just prescribe for it?
Dr. Theoharides: Absolutely, yes. Almost 20 years ago, a drug was approved with a very bad study by the name of El Miron. Subsequent studies cannot actually show that it worked, each day there's an approved drug in the United States. At about that time when I was really involved in scanning this problem. What is it that we are trying to uprise? If the bladder lining is being destroyed, can we help it? Fix it, so to speak.
Haylie Pomroy: Can I ask you about those broken capillaries that they see when they distend the bladder under anesthesia? Can that be why we lose, female incontinence, why there's leakage, why we have an urgency? Is that is it the irritation or is it is it the damage to the tissue?
Dr. Theoharides: The irritation and the damage will certainly contribute to the pain that people feel.
Haylie Pomroy: Got it.
Dr. Theoharides: The actual micro bleach probably do not contribute directly to the frequency. The nocturia drink that night, get up and. We used to say keep on drinking. Clear all whatever toxins. But you’re basically compounding the problem? Because now you're drinking a lot. You're going to be going even more so, which doesn't make sense. The first thing that we actually show is what the bladder lining is made of? It's made of primary molecules that stick out from the wall and keep the urine away from whatever damage might have happened. And those are chondroitin and Hyaluronate. Two natural molecules.
Haylie Pomroy: Say that again. They're what?
Dr. Theoharides: They’re two natural molecules that make up the protective lining of the latter. One is chondroitin and the other is called Hyaluronate. These are similar molecules that we have in our joints.
Haylie Pomroy: Chondroitin and is it like hyaluronic acid or hyaluronic?
Dr. Theoharides: I try to avoid saying hyaluronic acid because the word acid is known as a bladder… Let's assume that the bladder lining got destroyed in various parts. Therefore, those two molecules are gone. And now we have inflammation on top of it that causes the problems. What I thought is why don’t we just take hyaluronic acid and chondroitin sulfate and take a natural molecule that emits inflammation, we had chosen quercetin at the time which is a flavonoid. Put it up together and give them to the patient and see what happens. 20 years ago we created this supplement called Cystoprotek, which was made by the company algonot.com out of Florida. And two clinical studies and numerous publications have shown that it does wonders to help with this condition. I've had super duper patients in terms of being physicians, nurses, and others, they've given up their careers. They got back to doing what they love to do.
Haylie Pomroy: And so it's a natural therapy, right?
Dr. Theoharides: It is not a therapy, it's a natural approach to basically correcting the problem until we find out if in fact there is something more that we don't understand as of yet, that destroys basically the bladder lining. But in order to catch as many possibilities, since we know that allergies are involved to some extent, we always combine it with an antihistamine for the reason that histamine is being released, and we know it irritates nerve endings. The typical fear would be to ask someone to take any one that they could tolerate. Some of the antihistamines are a little pain-relieving as well. One is called hydroxyzine sold by the name Atarax. It's a very good antihistamine. It puts you in a deeper sleep at night. You don't get up in the middle of the night. Yet studies have shown that it has actually been producing properties as well. There’s a drug called Doxepin. It's a very old antidepressant, but it's very small dosage, 10 milligrams. You can actually use it as an antihistamine and it has pain-reducing properties as well, so it's important to combine Cystoprotek with something else.
Haylie Pomroy: Just talk to me a little bit more about the micronutrients. We're trying to feed the bladder lining. Or is the quercetin help lower the histamine level? Talk to me. Can we dissect those nutrients just a little bit?
Dr. Theoharides: From the point of allergy. Any substances that contain a lot of histamines are the ones that we try to avoid also in patients that get migraine headaches, it will be the same par die in this condition as well. You try to avoid wine, cheese, spinach, sardines, avocado, and tomatoes. All of those are loaded with histamine, reduce that. The quercetin would reduce the release of histamine and other inflammatory molecules from the mast cells and other immune cells that accumulate in the bladder because of the problem.
Haylie Pomroy: And so that's the quercetin? That's the bio flavonoid?
Dr. Theoharides: Correct.
Haylie Pomroy: Where does quercetin come from in this?
Dr. Theoharides: In this case, it comes from sapporo gland if that's what you're asking.
Haylie Pomroy: Yes.
Dr. Theoharides: All of the ingredients are mixed with olive oil because we're taking it by mouth. That increases the absorption from the gut into the bloodstream about five times.
Haylie Pomroy: Tell me again the quercetin comes from where?
Dr. Theoharides: It’s called “ sapporo gland” It's a natural plant.
Haylie Pomroy: It's a plant flavonoid.
Dr. Theoharides: Depending on the symptoms, this approach may be helpful, but not necessarily to all patients. Because when you look into the blood routed distension, in many cases, 30% of the cases there might be ulcers, hunner's ulcer. If you do have hunner's ulcer, you literally urologists have to burn the ulcers. Otherwise, it's gonna be throwing a cup of water on the roaring fire truck. Taking what I just discussed so far would be fine, but it might not be sufficient, depending on what it is. That's why it’s important for some to look at that. And there's one more co-morbidity that we did not mention, and that is endometriosis. And as you know it’s so common in women. And because it's excruciating pain most of the time, a surgeon has to go in and remove those areas that are involved. We and my colleagues have published a couple of papers where my colleagues biopsied both the endometrial lesion and the bladder lesion in patients who had both conditions and the findings were identical. It showed there was muscle activation and the hormone CRH was very high. My hope is that by addressing the problem the way we discussed, we might be able to get both endometriosis and interstitial cystitis at the same time to some extent.
Haylie Pomroy: And supporting the body and making the body stronger and more resilient and more healthy, is always the best approach if we can and whether some other intervention happens down the road, a healthier patient is going to be a more responsive patient.
Dr. Theoharides: The typical treat, I call it treatment because I'm not really treatment, especially by my urologists would be to dilate the bladder. And they think that if you dilate the bladder, eventually it won't take a few months for problems to reoccur. You're going to have a period of a few months. You might be okay. It's a horrible approach because it hurts a lot. A company out of Canada that literally copied Cystoprotek. They made a, I’m not sure urologists can put in the bladder, that contains hydraulic acid and convert it. The same idea that if I put it in the bladder directly might have a better effect. It's fine. It costs a lot of money, it does not have quercetin that is anti-inflammatory.
Haylie Pomroy: Right.
Dr. Theoharides: The you have to accrue has been described earlier on that I mentioned earlier. It's been on the market for a long time, even though the span has not supported it. However, what has happened over the last few years and a number publications have shown that if you're taking for more than a few months, about 30% of the people can turn blind.
Haylie Pomroy: I've seen that. Like I said, so many in the chat rooms, they talk about this is the only medication and El Moron is the one that I've seen. And then we see all the side effects that I go, oh my goodness. I love that we're talking about this. I know that a lot of people that deal with chronic illnesses, whether it's viral reactivation, right now we're seeing it in Long Covid, we're seeing it in ME/CFS. A lot of women are talking about it just as they're going through the transition of menopause where they're having these symptoms and they're getting turned away and told that they have just a nondetectable UTI. I just really been saying, partner with a practitioner that believes your truth, that is an advocate for your truth. If you're feeling this way and someone tells you, it's it's all in your head, remind them that that's not what hurts. But also, go to the next until you get looked at appropriately. And in the meantime, it's always good to see if you can utilize, food and micronutrients to help nourish a body that's struggling to see if you give it the right nutrients if it can right itself, or if it can use those micronutrients to rebalance the inflammatory processes or mast cell secretion. You do a much better way of describing that. I'm a huge advocate and I love hyaluronic acid or hyaluronic, I love chondroitin, quercetin was a big bioflavonoid in me, overcoming my own autoimmune disorder and creating balance and homeostasis. I'm really glad that you're talking to us about this first giving us validation that this is a real thing that goes on in so many women and that it is oftentimes seen when there are other imbalances in the body.
Dr. Theoharides: There are at least two other natural molecules one can use to help along. One is the molecule D-Mannose. Because D-Mannose knows it's more helpful to one who has actually UTI. But it acts as a decoy bacteria bind to it that can be removed from the body. Who knows if someone also might have what we call a subclinical infection because we usually call it an infection if we see a hundred thousand microorganisms in the microscope. But what if I want you 2000, but you're so sensitive it will still cause problems. And the other is Aloe vera is actually quite useful.
Haylie Pomroy: What is it? Say that again and what is formed is that come in?
Dr. Theoharides: It comes as a powder for instance and you can mix it up with food, juice, or whatever. It’s sort of coverage or or it is, it covers the bladder wall along with everything else. I’ve always found it useful. And we recommend both of those.
Haylie Pomroy: And what's nice is if you try it and it works, that's great. And if you try it, it doesn't work, that's okay too. I'm a big proponent of nurturing the body that's struggling. We're always striving for homeostasis. And if we just stop for a minute and think about how amazing it is that when we get a paper cut, we start the healing process immediately and that that's absolutely nutrient-dependent and not drug-dependent. The healing process is a nutrient-dependent process, and the more you're struggling, the more your nutrient demand is present. The more we need to nourish and support our body. I just want to ask you one other question. Do you ever see any correlation with children and bedwetting?
Dr. Theoharides: First, I never had experience with children, either directly or indirectly with a problem, so I don't know. And the very few, if any reports of interstitial cystitis started in children, even though there are some reports about adolescents. However, they do know that both allergies and stress can actually cause bedwetting. That's why I'm a very great proponent of giving Anarax or hydroxyzine, both are antihistamines, it put you to deep sleep and all first-generation or the older antihistamines are also anticholinergics, that it is a subtle quality, the neurotransmitter, that basically constricts that a twitch or muscle and open up the sphincter and makes you go. By giving that anticholinergic, you’re reducing the urge as well, which one can do fairly well. However, in certain cases, you have to worry about other things if you just watch its frequency and there's no pain and no other thing which. Because there’s what we call neurogenic bladder or one can have frequency without necessarily pathology in the bladder. There's also maybe one in 20 or 30 individuals that urinate a lot because they lock in antidiuretic hormone (ADH). Before I go crazy, I would always ask for an ADH level charge to make sure. At the same time, I will also ask the patient do you have any headaches, migraines aches, vision double. Because all of the symptoms are together, I suspect a benign adenoma in the pituitary gland. Because the pituitary gland is in two parts. The anterior part releases all the sex hormones, growth hormones, etc. The posterior part releases the antidiuretic hormone as well as oxytocin, which is a hormone that prepares the mother for breastfeeding.
Haylie Pomroy: We call it the love hormone. I'm fascinated.
Dr. Theoharides: It can be pressing on the part of the posterior pituitary and we call that Diabetes insipidus because you're liking it APH. The good thing is that APH is in the market you can give it. It's called this desmopressin. If you are lacking ADH and you can give ADH, that’s the end of that.
Haylie Pomroy: It’s ADH? That's great because I think so many times again, we're just turned away with symptoms. I love a negative lab. I love to rule things out just as much as to rule things in. I appreciate that. I love when I ask you a question and it leads to more knowledge for our listeners. Thank you.
Dr. Theoharides: The good thing about the institute is that even though someone might not come to my colleagues for interstitial cystitis if they come for something else, I am sure that we will ask enough questions to potentially uncover if there is a problem including interstitial cystitis and since the original treatment approach is something that not even a physician could do since you don't need a prescription for pretty much everything I said, that we can actually try to address those as well.
Haylie Pomroy: And it's that shift from siloed medicine. I feel very spoiled being part of the institute because I see how it should happen, where we look at the body as a whole. I don't know how we can address complex illnesses without complex solutions, complex diagnostics, and very complex research. That needs to be the model going forward if we're going to shift the trajectory of people's health. There's no reductionistic way out of where we find ourselves today.
Dr. Theoharides: Absolutely true.
Haylie Pomroy: I'm so glad we had this conversation. Dr. Harris, where can people find Cystoprotek? Where do people find that?
Dr. Theoharides: They’ll find it on Amazon. And they can find it on algonot.com, which is a company that's been making it for years.
Haylie Pomroy: That's great. Thank you so much and thank you for giving us permission to advocate for ourselves. I want to say one last thing. We had a really cool conversation about finding practitioners. And when you talked about urologists not showing up to this conversation, a lot of patients or a lot of us out there are told, you’re doctor shopping until you get what you need. And I said, I'm absolutely doctor shopping until I get what I need because I need to be well and in order to be well my story and my truth have to be heard. We had someone that said, that that's a bad thing. And I actually say, go find somebody that could help you on your wellness journey. As we go through these struggles with chronic disease and chronic inflammation, it's not that we're trying to collect practitioners, but I'm all for collecting practitioners if you're going in the right direction. I'd love you to have 40 of them or one of them, as long as you're going in the right direction. Dr. Harris, I can't thank you enough. Our community just absolutely adores you. You're always such an advocate for each and every one of us. I love to have natural opportunity, to give my body what it needs to ride itself. Thank you. I really appreciate it. Please come back. Everybody loves you and we will talk soon.
Dr. Theoharides: Thank you very much. Bye.
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Interstitial cystitis and bladder pain syndrome are often misunderstood by doctors, leading to frustration and inadequate treatment for a lot of women.
I’m joined by Dr. Theoharis Theoharides, a renowned expert in clinical immunology. Dr. Theoharides brings his extensive knowledge and experience to our discussion on how women can manage these conditions for better health.
Together, we explore the symptoms and diagnostic challenges of interstitial cystitis and bladder pain syndrome, including the role of mast cell activation and the impact of stress.
Dr. Theoharides shares his expertise and gives us practical advice on supporting and enhancing the health of those dealing with these challenging conditions.
Tune in to the Fast Metabolism Matters Podcast – What Is Interstitial Cystitis?
Enjoy this episode? Subscribe to Fast Metabolism Matters on Apple Podcasts and leave a 5-star review.
https://podcasts.apple.com/us/podcast/fast-metabolism-matters-with-haylie-pomroy/id1548802705
Get my nutrition and supplement programs for the best results.
PLUS Get 20% off when you buy from my shop!
https://hayliepomroy.com/podcast
Sign up for the 10-Day Cleanse Challenge here!
https://hayliepomroy.com/cleanse
Get a FREE hard copy of the Fast Metabolism Diet book!
https://hayliepomroy.com/freebook
Become a certified Fast Metabolism Health Coach NOW!
Dr. Theoharis C. Theoharides is a prominent professor at Nova Southeastern University (NSU) and previously at Tufts School of Medicine. His research focuses on neuroinflammation, particularly the role of mast cells in conditions like autism spectrum disorder, chronic fatigue syndrome, and Long-COVID syndrome. With numerous awards, over 486 publications, and 37 patents, Dr. Theoharides is a leading expert in his field. He has also developed unique supplements containing flavonoids to promote health and wellness.
LinkedIn: https://www.linkedin.com/in/theoharis-theoharides-ms-phd-md-faaaai-67123735
Transcript Below:
Haylie Pomroy: I'm Haylie Pomroy, #1 New York Times bestselling author of the Fast Metabolism Diet. Today, we're going to talk about a very interesting subject, and one that a lot of my women friends comment on, question about, and deal with. We're going to talk about both interstitial cystitis and bladder pain syndrome, and a couple of other co-morbidities or things that go on along with it. Of course, I'm very thrilled to have a very dear colleague of mine, Dr. Theoharides. Dr. Theoharides is the Professor and Vice-Chair of Clinical Immunology and the Director of the Institute for Neuro-Immune Medicine in Clearwater. He's trained in allergy and clinical immunology from Yale University and the internal medicine at New England Medical Center. Dr. Harris, thank you so much for being here with me today. I can't tell you how many of my women friends and colleagues are excited that we're having this conversation.
Dr. Theoharides: It's a real pleasure. We will be talking about medical…
Haylie Pomroy: We have to do this, though, because we need solutions and answers and ideas. I want to start first with, can you help me define, because there's a lot of misinformation out there about interstitial cystitis and what a lot of people call bladder pain syndrome.
Dr. Theoharides: The term interstitial cystitis is really almost not the word because it doesn't really describe something specific, but it stuck over the years. Most of the patients are primarily women, do have also bladder pain or lower pelvic pain. This is why sometimes we call it interstitial cystitis/ bladder pain syndrome. We'll get into these in a second. But unfortunately, the symptoms are confusing, they coexist with symptoms that involve other organs. I'm sorry to say, many of our colleagues just don't believe that this is a real problem. And we already know similar approaches have unfortunately happened from chronic fatigue, fibromyalgia, etc.
Haylie Pomroy: A lot of women in our community talk about feeling medically gaslit over this issue. They feel like they go in and they talk to their practitioner about, pelvic pain. In our community, they talk about almost like a bladder on fire urgency, pressure with urination. They're tested for a UTI and they’re told everything's fine, go away, and go home. And it's frustrating. How can someone get an adequate diagnosis with this? I have a million questions to ask you and I'm gonna try and break it down into bite size. First, how would they get diagnosed?
Dr. Theoharides: The clinical appearance is pretty much what you said. It feels like I heard your doctor's touch. You go to your urologist and they’ll do a urine culture and you turn out to be negative. Many urologists will say, we'll give you some antibiotics. They’ll give you antibiotics for 2 weeks and nothing happens. You go back, we’ll give you other antibiotics for another couple of weeks, and nothing happens. The clinical diagnosis is pain frequency. It lasts about 2 to 3 months with no documented urinary bacteria growing or any other microbe growing.
Haylie Pomroy: Can they see anything if they ultrasound the bladder? Is it anatomically different?
Dr. Theoharides: No, they cannot. For many years, the National Institute of Health had supported very vigorously both basic science as well as clinical studies. And while I was at Tufts University, I was actually funded 3 times by the National Institute of Health and I participated in two very large clinical trials as well. Most urologists will actually do a cystoscopy in the old days.
Haylie Pomroy: What's that?
Dr. Theoharides: They put basically a tube inside the bladder and they look. Most of the time nothing is seen… This is why the National Institute of Health for Clinical and Basic Studies had requested that cystoscopy be done under general spinal anesthesia during which time the bladder is extended by putting in normal sailing. And the reason being is that if the bladder was extended, there were small hemorrhages showing up on the lining of the bladder. And that will be a telltale sign of interstitial cystitis. However, most urologists don’t know how to do that and it is also very expensive if you have to go under anesthesia. By the same token, by doing the simple cystoscopy in the old days, it turns out to be negative.
Haylie Pomroy: There are a lot of theories about this, and that's why I was excited to grab you and ask you for some true science around it. A lot of times, individuals that have a tendency to have a lot of allergies or food allergies or environmental exposures, this is a common symptom profile that we see in these patients. Why? What's the correlation?
Dr. Theoharides: I've called this and I've published almost 40 papers on this topic over the years. I've literally called this “an allergy of the bladder.”
Haylie Pomroy: Yes! An allergy of the bladder. But women that deal with this, they get told it's your eyes and the broken capillaries in your eyes, but you feel it in your pelvis.
Dr. Theoharides: But as we discussed in other episodes, the immune cells called the mast cells that are involved in allergens can also be triggered by substances that we’re not allergic to. That's why I try to avoid the word “Allergy of the bladder” I'd rather call it “Mast cell activation of the bladder” Having said that, we've published numerous times. In fact, the mast cells in the bladder are activated in this patient and in fact, the urologist in Europe do a biopsy of the bladder wall, it’s called the detrusor muscle. And if they see more than 30 mast cells per high power field, they do call it mastocytosis of the bladder. But they consider that a subcategory of your overall interstitial cystitis. That's fine. But this is one of the problems that my colleagues have been facing. What do we call mastocytosis? Because so far as we've discussed in other episodes, mastocytosis is considered only if it shows up on the skin or your bone marrow. What happens if it’s in your gut? Definitely gastrointestinal mastocytosis. Same idea, if it’s in the bladder, it’s bladder mastocytosis. But still, we cannot really biopsy in the United States. They will have to say that the muscles are…
Haylie Pomroy: If the mass cells are activated, that means that there's a lot of histamine in the tissues or histamine in the area?
Dr. Theoharides: Absolutely, yes. Not only histamine but many other mediators that sensitize nerve endings and that's why you get the sensation of pain. Which not actually publishing in this area until a few years ago because some of my colleagues had retired. It seems that other colleagues very recently have revisited the issue and now they say, yes, mast cell activation is very important in there.
Haylie Pomroy: We see it a lot and I think I understand the correlation, but I'd love your help in this. We see it a lot in women that are pre-menopausal and menopausal. And there is a significant change in hormones during that time. The class of hormones, prostaglandins change and the prostaglandins help to regulate inflammation also. Is it the hormone shift, or the lower estrogen? What's happening during that time period why do we see this so often?
Dr. Theoharides: Let me address this in different ways because especially the prostaglandins do not actually regulate. Let's keep that aside.
Haylie Pomroy: Correct me I love that because I sit around and wonder, I don't I have no idea. That's why I pull you in.
Dr. Theoharides: Prostaglandins actually are associated with good and bad things. We call it good prostaglandins and bad prostaglandins. Prostaglandin E, for instance, can be the good guys. They open up the bronchi and they protect the lining of the stomach so we don't get ulcers. Prostaglandin D and the Prostaglandin F are the bad guys. That's why in general, when I see your supplements being sold or, other podcasts, they just use general terms that really confuse everybody because they’re a little more complicated. Now let's talk about the fact that many patients do show up with what we call otherwise comorbidities. They might have allergies interest in general. They might have fatigue, not necessarily chronic fatigue, might have fibromyalgia, so they show up basically to the urologist because that's the most presenting symptom. And then they mention all the other symptoms. At the end of the day, they say you're crazy.
Haylie Pomroy: It's not necessarily just a bladder disorder. It's a systemic disorder that's manifesting in the bladder tissue?
Dr. Theoharides: Not quite. What we call interstitial cystitis is actually in the bladder or pelvis. It turns out so many other things seem to be happening at the same time. Then one wonders if the pathogenesis is actually broader than that. I agree with you from that point of view. But I wouldn't say they’re necessarily interstitial cystitis is a systemic. There are a few things that we absolutely have to make sure we do before we move forward. There are no objective markers, there's nothing you can measure in the blood so far that can tell you got actual interstitial cystitis. In fact, we're very interested in doing that. But since we know the allergic-like problem, so activation of the mast cells does participate, then addressing those would only do, actually good to the patient because we will be addressing those problems and indirectly potentially reducing the symptoms of interstitial cystitis. In addition, we know that stress is a major trigger, not the allergens. We’ve known it for chronic fatigue, and fibromyalgia. And it shows that the first hormone released under stress, though we thought it was released only in the brain. It is actually in the bladder. We've measured it.
Haylie Pomroy: What is it?
Dr. Theoharides: it's called Corticotrophin-releasing hormone (CRH). Unfortunately, it is not measured in clinical. We and other colleagues have measured in the bladder and shown that correlation actually was severe symptoms. Reducing stress however we can do that is really an absolute must. Now for that reason, because it's such a complicated problem. Last year just about this time, and as you actually sponsored the conference in Clearwater, where we had three of the best-known urologists. And I participated in it, we had about 90 or so participants. And what was amazing to me is that we sent out 500 emails and I could just by regular mail, every urologist in Florida invited them. It was actually free. Only one urologist actually joined. That tells us that to this day, still, urologist don't believe this is real.
Haylie Pomroy: Do you think that this is one of the, I don't know if we call it a syndrome or a disorder? This is one of the issues in our bodies that there's not great treatment for it. There's the medication, that is if you're diagnosed with it, the medication options from a pharmacological perspective has a ton of side effects. I wonder sometimes if it's like, we don't know how to solve the problem. We don't know what to script for for the problem. Then let's just kind of bury our heads in the sand and pretend like it's not a problem. It's much easier to tell a woman that, give her a macro bid, she doesn't have a UTI, do more Kegels. Read the chat rooms about this disorder. What women have been told is just so heartbreaking. But do you think some of it is because there's not a good drug that someone can just prescribe for it?
Dr. Theoharides: Absolutely, yes. Almost 20 years ago, a drug was approved with a very bad study by the name of El Miron. Subsequent studies cannot actually show that it worked, each day there's an approved drug in the United States. At about that time when I was really involved in scanning this problem. What is it that we are trying to uprise? If the bladder lining is being destroyed, can we help it? Fix it, so to speak.
Haylie Pomroy: Can I ask you about those broken capillaries that they see when they distend the bladder under anesthesia? Can that be why we lose, female incontinence, why there's leakage, why we have an urgency? Is that is it the irritation or is it is it the damage to the tissue?
Dr. Theoharides: The irritation and the damage will certainly contribute to the pain that people feel.
Haylie Pomroy: Got it.
Dr. Theoharides: The actual micro bleach probably do not contribute directly to the frequency. The nocturia drink that night, get up and. We used to say keep on drinking. Clear all whatever toxins. But you’re basically compounding the problem? Because now you're drinking a lot. You're going to be going even more so, which doesn't make sense. The first thing that we actually show is what the bladder lining is made of? It's made of primary molecules that stick out from the wall and keep the urine away from whatever damage might have happened. And those are chondroitin and Hyaluronate. Two natural molecules.
Haylie Pomroy: Say that again. They're what?
Dr. Theoharides: They’re two natural molecules that make up the protective lining of the latter. One is chondroitin and the other is called Hyaluronate. These are similar molecules that we have in our joints.
Haylie Pomroy: Chondroitin and is it like hyaluronic acid or hyaluronic?
Dr. Theoharides: I try to avoid saying hyaluronic acid because the word acid is known as a bladder… Let's assume that the bladder lining got destroyed in various parts. Therefore, those two molecules are gone. And now we have inflammation on top of it that causes the problems. What I thought is why don’t we just take hyaluronic acid and chondroitin sulfate and take a natural molecule that emits inflammation, we had chosen quercetin at the time which is a flavonoid. Put it up together and give them to the patient and see what happens. 20 years ago we created this supplement called Cystoprotek, which was made by the company algonot.com out of Florida. And two clinical studies and numerous publications have shown that it does wonders to help with this condition. I've had super duper patients in terms of being physicians, nurses, and others, they've given up their careers. They got back to doing what they love to do.
Haylie Pomroy: And so it's a natural therapy, right?
Dr. Theoharides: It is not a therapy, it's a natural approach to basically correcting the problem until we find out if in fact there is something more that we don't understand as of yet, that destroys basically the bladder lining. But in order to catch as many possibilities, since we know that allergies are involved to some extent, we always combine it with an antihistamine for the reason that histamine is being released, and we know it irritates nerve endings. The typical fear would be to ask someone to take any one that they could tolerate. Some of the antihistamines are a little pain-relieving as well. One is called hydroxyzine sold by the name Atarax. It's a very good antihistamine. It puts you in a deeper sleep at night. You don't get up in the middle of the night. Yet studies have shown that it has actually been producing properties as well. There’s a drug called Doxepin. It's a very old antidepressant, but it's very small dosage, 10 milligrams. You can actually use it as an antihistamine and it has pain-reducing properties as well, so it's important to combine Cystoprotek with something else.
Haylie Pomroy: Just talk to me a little bit more about the micronutrients. We're trying to feed the bladder lining. Or is the quercetin help lower the histamine level? Talk to me. Can we dissect those nutrients just a little bit?
Dr. Theoharides: From the point of allergy. Any substances that contain a lot of histamines are the ones that we try to avoid also in patients that get migraine headaches, it will be the same par die in this condition as well. You try to avoid wine, cheese, spinach, sardines, avocado, and tomatoes. All of those are loaded with histamine, reduce that. The quercetin would reduce the release of histamine and other inflammatory molecules from the mast cells and other immune cells that accumulate in the bladder because of the problem.
Haylie Pomroy: And so that's the quercetin? That's the bio flavonoid?
Dr. Theoharides: Correct.
Haylie Pomroy: Where does quercetin come from in this?
Dr. Theoharides: In this case, it comes from sapporo gland if that's what you're asking.
Haylie Pomroy: Yes.
Dr. Theoharides: All of the ingredients are mixed with olive oil because we're taking it by mouth. That increases the absorption from the gut into the bloodstream about five times.
Haylie Pomroy: Tell me again the quercetin comes from where?
Dr. Theoharides: It’s called “ sapporo gland” It's a natural plant.
Haylie Pomroy: It's a plant flavonoid.
Dr. Theoharides: Depending on the symptoms, this approach may be helpful, but not necessarily to all patients. Because when you look into the blood routed distension, in many cases, 30% of the cases there might be ulcers, hunner's ulcer. If you do have hunner's ulcer, you literally urologists have to burn the ulcers. Otherwise, it's gonna be throwing a cup of water on the roaring fire truck. Taking what I just discussed so far would be fine, but it might not be sufficient, depending on what it is. That's why it’s important for some to look at that. And there's one more co-morbidity that we did not mention, and that is endometriosis. And as you know it’s so common in women. And because it's excruciating pain most of the time, a surgeon has to go in and remove those areas that are involved. We and my colleagues have published a couple of papers where my colleagues biopsied both the endometrial lesion and the bladder lesion in patients who had both conditions and the findings were identical. It showed there was muscle activation and the hormone CRH was very high. My hope is that by addressing the problem the way we discussed, we might be able to get both endometriosis and interstitial cystitis at the same time to some extent.
Haylie Pomroy: And supporting the body and making the body stronger and more resilient and more healthy, is always the best approach if we can and whether some other intervention happens down the road, a healthier patient is going to be a more responsive patient.
Dr. Theoharides: The typical treat, I call it treatment because I'm not really treatment, especially by my urologists would be to dilate the bladder. And they think that if you dilate the bladder, eventually it won't take a few months for problems to reoccur. You're going to have a period of a few months. You might be okay. It's a horrible approach because it hurts a lot. A company out of Canada that literally copied Cystoprotek. They made a, I’m not sure urologists can put in the bladder, that contains hydraulic acid and convert it. The same idea that if I put it in the bladder directly might have a better effect. It's fine. It costs a lot of money, it does not have quercetin that is anti-inflammatory.
Haylie Pomroy: Right.
Dr. Theoharides: The you have to accrue has been described earlier on that I mentioned earlier. It's been on the market for a long time, even though the span has not supported it. However, what has happened over the last few years and a number publications have shown that if you're taking for more than a few months, about 30% of the people can turn blind.
Haylie Pomroy: I've seen that. Like I said, so many in the chat rooms, they talk about this is the only medication and El Moron is the one that I've seen. And then we see all the side effects that I go, oh my goodness. I love that we're talking about this. I know that a lot of people that deal with chronic illnesses, whether it's viral reactivation, right now we're seeing it in Long Covid, we're seeing it in ME/CFS. A lot of women are talking about it just as they're going through the transition of menopause where they're having these symptoms and they're getting turned away and told that they have just a nondetectable UTI. I just really been saying, partner with a practitioner that believes your truth, that is an advocate for your truth. If you're feeling this way and someone tells you, it's it's all in your head, remind them that that's not what hurts. But also, go to the next until you get looked at appropriately. And in the meantime, it's always good to see if you can utilize, food and micronutrients to help nourish a body that's struggling to see if you give it the right nutrients if it can right itself, or if it can use those micronutrients to rebalance the inflammatory processes or mast cell secretion. You do a much better way of describing that. I'm a huge advocate and I love hyaluronic acid or hyaluronic, I love chondroitin, quercetin was a big bioflavonoid in me, overcoming my own autoimmune disorder and creating balance and homeostasis. I'm really glad that you're talking to us about this first giving us validation that this is a real thing that goes on in so many women and that it is oftentimes seen when there are other imbalances in the body.
Dr. Theoharides: There are at least two other natural molecules one can use to help along. One is the molecule D-Mannose. Because D-Mannose knows it's more helpful to one who has actually UTI. But it acts as a decoy bacteria bind to it that can be removed from the body. Who knows if someone also might have what we call a subclinical infection because we usually call it an infection if we see a hundred thousand microorganisms in the microscope. But what if I want you 2000, but you're so sensitive it will still cause problems. And the other is Aloe vera is actually quite useful.
Haylie Pomroy: What is it? Say that again and what is formed is that come in?
Dr. Theoharides: It comes as a powder for instance and you can mix it up with food, juice, or whatever. It’s sort of coverage or or it is, it covers the bladder wall along with everything else. I’ve always found it useful. And we recommend both of those.
Haylie Pomroy: And what's nice is if you try it and it works, that's great. And if you try it, it doesn't work, that's okay too. I'm a big proponent of nurturing the body that's struggling. We're always striving for homeostasis. And if we just stop for a minute and think about how amazing it is that when we get a paper cut, we start the healing process immediately and that that's absolutely nutrient-dependent and not drug-dependent. The healing process is a nutrient-dependent process, and the more you're struggling, the more your nutrient demand is present. The more we need to nourish and support our body. I just want to ask you one other question. Do you ever see any correlation with children and bedwetting?
Dr. Theoharides: First, I never had experience with children, either directly or indirectly with a problem, so I don't know. And the very few, if any reports of interstitial cystitis started in children, even though there are some reports about adolescents. However, they do know that both allergies and stress can actually cause bedwetting. That's why I'm a very great proponent of giving Anarax or hydroxyzine, both are antihistamines, it put you to deep sleep and all first-generation or the older antihistamines are also anticholinergics, that it is a subtle quality, the neurotransmitter, that basically constricts that a twitch or muscle and open up the sphincter and makes you go. By giving that anticholinergic, you’re reducing the urge as well, which one can do fairly well. However, in certain cases, you have to worry about other things if you just watch its frequency and there's no pain and no other thing which. Because there’s what we call neurogenic bladder or one can have frequency without necessarily pathology in the bladder. There's also maybe one in 20 or 30 individuals that urinate a lot because they lock in antidiuretic hormone (ADH). Before I go crazy, I would always ask for an ADH level charge to make sure. At the same time, I will also ask the patient do you have any headaches, migraines aches, vision double. Because all of the symptoms are together, I suspect a benign adenoma in the pituitary gland. Because the pituitary gland is in two parts. The anterior part releases all the sex hormones, growth hormones, etc. The posterior part releases the antidiuretic hormone as well as oxytocin, which is a hormone that prepares the mother for breastfeeding.
Haylie Pomroy: We call it the love hormone. I'm fascinated.
Dr. Theoharides: It can be pressing on the part of the posterior pituitary and we call that Diabetes insipidus because you're liking it APH. The good thing is that APH is in the market you can give it. It's called this desmopressin. If you are lacking ADH and you can give ADH, that’s the end of that.
Haylie Pomroy: It’s ADH? That's great because I think so many times again, we're just turned away with symptoms. I love a negative lab. I love to rule things out just as much as to rule things in. I appreciate that. I love when I ask you a question and it leads to more knowledge for our listeners. Thank you.
Dr. Theoharides: The good thing about the institute is that even though someone might not come to my colleagues for interstitial cystitis if they come for something else, I am sure that we will ask enough questions to potentially uncover if there is a problem including interstitial cystitis and since the original treatment approach is something that not even a physician could do since you don't need a prescription for pretty much everything I said, that we can actually try to address those as well.
Haylie Pomroy: And it's that shift from siloed medicine. I feel very spoiled being part of the institute because I see how it should happen, where we look at the body as a whole. I don't know how we can address complex illnesses without complex solutions, complex diagnostics, and very complex research. That needs to be the model going forward if we're going to shift the trajectory of people's health. There's no reductionistic way out of where we find ourselves today.
Dr. Theoharides: Absolutely true.
Haylie Pomroy: I'm so glad we had this conversation. Dr. Harris, where can people find Cystoprotek? Where do people find that?
Dr. Theoharides: They’ll find it on Amazon. And they can find it on algonot.com, which is a company that's been making it for years.
Haylie Pomroy: That's great. Thank you so much and thank you for giving us permission to advocate for ourselves. I want to say one last thing. We had a really cool conversation about finding practitioners. And when you talked about urologists not showing up to this conversation, a lot of patients or a lot of us out there are told, you’re doctor shopping until you get what you need. And I said, I'm absolutely doctor shopping until I get what I need because I need to be well and in order to be well my story and my truth have to be heard. We had someone that said, that that's a bad thing. And I actually say, go find somebody that could help you on your wellness journey. As we go through these struggles with chronic disease and chronic inflammation, it's not that we're trying to collect practitioners, but I'm all for collecting practitioners if you're going in the right direction. I'd love you to have 40 of them or one of them, as long as you're going in the right direction. Dr. Harris, I can't thank you enough. Our community just absolutely adores you. You're always such an advocate for each and every one of us. I love to have natural opportunity, to give my body what it needs to ride itself. Thank you. I really appreciate it. Please come back. Everybody loves you and we will talk soon.
Dr. Theoharides: Thank you very much. Bye.
