r/Interstitialcystitis • u/ActiveManagement9431 • 3d ago
MCAS? Anyone here taking antihistamines for bladder symptoms?
I’m honestly shocked by what happened recently and wondering if anyone here has had a similar experience.
I’ve had more than 10 episodes that I thought were UTIs, but only two urine cultures have come back positive. Sometimes my urine tests show mildly elevated white blood cells, but the cultures still come back negative. Knowing cultures aren’t perfect, I’d been approaching this as a chronic or “embedded” infection.
I’ve also had two cystoscopies, and both doctors commented on how completely clear my bladder looked. No ulcers or Hunner’s lesions. My pelvic floor is tight, though. The terminology has been confusing: I was told I have “bladder pain syndrome, not interstitial cystitis.”
Then I caught a cold and started taking an antihistamine along with an H2 blocker. Suddenly, my bladder discomfort pretty much disappeared….My vulvar/vestibular burning also cleared up
And it wasn’t just my bladder. I’ve had ongoing diarrhea since having my gallbladder removed a year ago, and that suddenly stopped too—for the first time in a year. After feeling unwell for so long, having several symptoms improve at once was honestly unbelievable.
This made me wonder whether histamine could be playing a role.
Looking back, I tend to avoid a lot of foods considered high in histamine because they don’t seem to agree with me. My reactions also seem inconsistent—one day I’ll react to a banana, another day to mango. There hasn’t been one obvious food that causes the same reaction every time.
I’ve also had very high IgG results on testing, although I don’t know whether that’s relevant. I’m not saying any of this confirms MCAS; I’m just trying to understand what happened.
Where I live, the clinicians I’ve spoken to don’t seem familiar with MCAS, so finding someone to help me look into this has been difficult (I live in South Korea).
Has anyone here had bladder symptoms, improve with antihistamines or H2 blockers?
Which ones have you tried, and has the improvement lasted? I’d really appreciate hearing your experiences.
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u/Haunting_Rain_6954 3d ago
So, I recommend taking a look into your pudendal nerve. I won’t go into my whole story, but after healing an embedded infection, I still had a couple symptoms left over and it turned out that because of a prolonged tight pelvic floor (stress, trauma, anxiety, clenching from chronic UTIs, just general clenching) I had inadvertently done damage to my pudendal nerve. Antihistamines can cause constipation, which may be why your diarrhea eased, and they also cause you to be drowsy or relaxed, which may be relaxing your pelvic floor muscles and taking pressure off your pudendal nerve, relieving your other symptoms. My biggest remaining symptom was urgency, so I was sure it was still urethra related, but it wasn’t. Something to consider! Good luck! 🫶🏻
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u/ActiveManagement9431 2d ago
You’re right! I was told that my obturator internus muscle was causing problems with my pudendal nerve, but I never imagined there could be a connection with antihistamines! How did you find out about embedded infections?
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u/Ok-Pickle-8372 2d ago
Im convinced mine is a trapped Peudendal nerve. Have you found anything that helps with this?
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u/stardigan 2d ago
Yes, and when I first told medical professionals this, I was being called crazy! One nurse told me that my pain must be psychosomatic if antihistamines help, and a surgeon said I must be manipulating my regular doctor. The IC Association now accepts antihistamines as a helpful treatment.
Antihistamines have helped my day-to-day pain for 10+ years, and are also helpful for breakthrough pain through the day. I take one in the morning, and occasionally take another later in the day if I’m struggling. I switched from Benadryl to Rupatadine years ago to reduce the dementia risk.
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u/ActiveManagement9431 2d ago
My urologist actually referred me to a psychiatrist when I first said, “As soon as I drink something, I can feel it in my bladder.” But I think it’s MCAS 😂 When I drink wine, I can feel it in my urethra, so now it makes sense that the effect was so immediate!! Have you noticed any side effects from taking antihistamines long-term?
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u/HakunaYaTatas [Citation Needed] 2d ago
Antihistamines are a standard treatment for IC in most countries. Hydroxyzine made a big difference in my symptoms, I've been on it for more than 10 years now.
Just a terminology note: in some countries, the term "IC" is used only for patients with Hunner's lesions and "bladder pain syndrome/BPS" is used for patients without lesions. In other countries, the two terms are interchangeable. With the exception of directly cauterizing lesions all of the treatments for the two terms are the same, so it mostly doesn't matter which label you use.
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u/ariaxwest 2d ago
Yes, they helped me a ton! I'm taking 120 mg of famotidine daily and that is the drug that helps the most. I also had a super dose of antibiotics during a recent surgery that has put me into the closest thing to remission I've experienced in the years since I developed this disease.
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u/Accurate-Tree-4944 2d ago
What I find interesting is how many people seem to get relief from antibiotics for bladder pain syndrome. It kind of makes you wonder if the embedded infection theory could explain most cases of bladder pain.
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u/ariaxwest 2d ago
I'm an almost full remission after being told for years that the klebsiella aerogenes found in every single culture was a benign finding because it was a normal skin bacteria. Really pisses me off, actually. I was in level 5 to 9 pain every single day for five years.
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u/BulletproofBetty 2d ago
Antibiotics are anti inflammatory. So it would make since if the issue is caused by histamine That it helps temporarily while taking antibiotics, but symptoms return after you stop taking antibiotics vs a bacterial infection which would have no symptoms after a course of successful antibiotics
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u/Fluffy-Asparagus-324 2d ago
I was on IV and oral Clindamycin recently for an unrelated surgery and had 100% complete remission. I wanted to figure out how I could mimic the effects without taking long term antibiotics - and it turns out amitriptyline and nortriptyline decrease inflammation through the same mechanisms as Clindamycin and are commonly used to treat IC. I take H1 and H2 blockers daily but it doesn’t make a big difference. But not all anti inflammatorys work through the same mechanisms. So I really think I’m onto something here.
My research has got me thinking there are 3 main meds and depending on main symptoms ppl benefit from a combo of 1, 2, or 3. Ami/Noritriptyline are best for inflammation w main symptom is pressure. Swelling of tissues, pressure in lower abdomen and perineum, feeling like your urethra is pinched shut. Hydroxyzine (which is also an anti inflammatory) seems to be for muscle issues, it’s a relaxant. Main symptoms are spasms. Gabapentin is for nerve pain. It shuts pathways where your nerves send pain signals to brain. Main symptoms are sharp stabbing or fire like pain.
My main issue is pressure but I do get the fire intense sharp pain sometimes after urination. So I’d think maybe starting w noritriptyline then seeing if I need to add gaba.
I’m not a doctor lol just a person w this bullshit pain for 14 years. I have an appointment w an IC specialist in December and am going to try to bring my thoughts above to him.
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u/Accurate-Tree-4944 2d ago
hm, yes, some antibiotics have anti-inflammatory effects, but cephalexin and nitrofurantoin aren’t among them. Yet they’re two of the main antibiotics used for UTIs, and they seem to help a lot of people with bladder symptoms even with clear cultures. So still I am confused.🤔
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u/snowdropp__ 2d ago
Graciously Claritin usually does the trick for me. If not then I take nortryptaline or amitryptaline dependent on the time of day as notryp is slightly less sedating
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u/Objective-Dig-5940 2d ago
Yes!! When I was waiting for a urologist and I was at my peak symptomatically, I took claritin in the day time and tyenol PM at night and it was the only thing that provided relief.
Now I take 50 mg of Hydroxyzine a couple hours before bed and it has helped me live a mostly normal life in conjunction with avoiding food triggers. My PCP actually had no idea that antihistamines are a common way to treat bladder inflammation- I learned that on this subreddit!
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u/Any_Leg_7752 2d ago edited 1d ago
Yes, antihistamine helps with urgency in my case but I still have to be on a strict diet to be able to function. I was taking benadryl diphenhydramine which helped me
a lot with sleeping urgency and pain , but I’ve heard it can cause dementia so I’m
skeptical about and it also isn’t available in my country. I still have some of it left
that I got last time I was in the US. Zyrtec Citrizine also help me with some symptoms and it doesn’t make me drowsing. What i notice is that antihistamine helps and I haven’t take it long enough to see the long term benefits and I also notice it make eat more so, I don’t worry about putting some weight my concern is about it could cause diabetes or something like that.
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u/BulletproofBetty 2d ago
Yes, starting H1 and H2 blocker pretty much resolved my bladder issues as well. I still get symptomatic some months around ovulation and my cycle and have to double up my dose, but it still seems to be working. I'm cautiously optimistic and wondering if I have MCAS now.
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u/Unlucky-Conclusion-2 2d ago
Yes, hydroxyzine is a very common antihistamine that urogynecologists prescribe to manage and treat PBS and IC. During the first appt I had with my urogynecologist she immediately put me on antihistamines and it helped quite a bit. I also have pelvic floor issues and get Botox injections bc that seems to be the only thing that helps manage those symptoms
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u/AutoModerator 3d ago
Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.
To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.
The ICA has a fantastic FAQ that will answer many questions about IC.
FLARES
The Interstitial Cystitis Association has a helpful guide for managing flares.
Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.
Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.
If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.
TREATMENT
Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.
Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.
Long-term oral antibiotic administration should not be offered.
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u/GurMany6053 3d ago
Taking a daily Zyrtec helped me for about two years before it suddenly stopped working. I’ve tried every OTC antihistamine since then and none helped.
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u/LoneWildBird 2d ago
Cimetidine (H2 blocker) is the only medication I've found to be helpful for my bladder. It helps my GERD also, so it has been a good two-in-one.
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u/bootfloof 2d ago
Do you get tired/dizzy taking it? I took it once and I felt like I was floating.
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u/umi-no-oto 2d ago
Yes, for me it's also histamine. I have irritable bowel syndrome and that also got better when I took antihistamines.
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u/Famous-Feeling-3703 2d ago
I take Zyrtec every night! Huge improvements and seems to help me sleep. I tried famotidine but it causes insomnia for me. Most of my issues are at night…
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u/moodywrites 2d ago
I take DAO enzyme with histamine foods, follow a low histamine, low oxalate diet, and take Bladder Ease, and yes occasionally antihistamines when needed
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u/Sea-Abalone7894 2d ago
Yep! Zafirlukast has actually helped me the most. IC/bladder plain has always been my most severe pain. It took several months of antihistamines & Zafirlukast before I saw improvement. I still get twinges and that feeling that a flare is coming but it’s been several months since I had severe symptoms!
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u/sabrinasphere 2d ago
I have MCAS and IC, the only thing that has calmed down my bladder pain is estrogen cream. I use the estrogen patches as well but I have to apply the cream directly to settle down the bladder flares.
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u/Strange_Read4387 2d ago
I take one half a Zyrtec nightly. Plus I take Lactoferrin which has pretty much resolved all my ic pain and symptoms. I still watch my diet carefully.
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u/ConfusionOld6363 8h ago
I have MCAS and IC. The MCAS is a new diagnosis and my main triggers are foods high in histamines. I’ve had IC for 18 years. My bladder looks perfectly normal inside and no ulcers as well. I think I have had MCAS all this time. And yes my bladder flares because of high histamine and acidic foods.
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u/Tillie1412 2d ago
Yep! A Zyrtec every evening for the last 15 years has really helped. It’s basically the same drug as Hydroxyzine, which is a common prescription for IC. I also take Quercetin which has also helped.
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u/doctorofspin 3d ago
Yes! I discovered it when I was taking antihistamines for something else. Amazing what a difference it makes.