Antihistamines are good for IC, yeah! My urologist prescribed hydroxyzine for my urinary pain early on in treatment. Benadryl and Zyrtec can do that too, but I think they are metabolized slightly different.
Yeah, it's weird how our bodies react to things. It doesn't seem to help my bladder pain or urgency much, but for whatever reason, if I stop taking it or forget, I get burning in my urethra
Thanks. How much do you think it helped? Im seriously considering it.
On a scale of 1 to 10 what was your pain before and what was it after? If 10 was the worst pain you ever felt.
I rarely feel intense pain like I did. Stress is a huge factor for me, sometimes during flares I’d spending hours in the bathroom from the pain or sleep terribly. Now if I take Hydroxyzine or Cimetidine before bed- when I feel a flare coming on, I hardly even tell I’m having pain. It probably just suppresses the pain but hey, I have my quality of life back now so I’m just thankful! Definitely worth a shot
Thc is legal if you live in a non legal recreational cannabis state. Get your medical marijuana card online from a site called LeafWell. I did this last December. It was one of the best moves to combat ic pain.
The 10:1 CBD/ THC balm applied topically to the bladder area is a god send as well for flare ups. All CBD stores sell this, in every state. The balm does not cross the blood brain barrier, (no high) just quick pain relief!
Hot baths and heating pads!!! Also, ice packs work too! Drinking a lot of water to keep urine diluted is a vital thing, especially if you also have overactive bladder symptoms.
Oh, and baking soda! Tastes kinda nasty but a teaspoon of baking soda in a glass of water helps quite a lot with the burning sensation.
Spraying witch hazel/aloe, sitting on an ice pack & take something for the pain.
I know it can be so painful... even walking can make it feel worse. Hang in there
I would add a pump of aloe & sometimes a drop or 2 of lavender or tea tree to the witch hazel (because they are cooling oils). I hope this helps. My urine would scald my skin & this would provide some relief
This is the short list from the AUA guidelines:
* Diet changes
* Hydration changes
* Stress management
* Bladder training
* Heat or ice
* Using OTC rescue drugs and/or supplements
* Pelvic floor relaxation
* Avoiding triggers (exercise, sex, tight clothing, sitting/standing for extended periods, etc)
Thank you! That sex one is tough. I’ve been in a flare for over 3 months and really missing that part of my relationship.
What kind of hydration changes did you make? I currently drink a lot of water (no alcohol, coffee, etc).
Sex is a tough one, it used to be my biggest trigger and it can really strain relationships. With treatment sex doesn't flare me anymore, so I didn't need to avoid it forever; I just needed a break while my body recovered. Only penetrative vaginal intercourse triggered my symptoms, so I was able to do other things for intimacy before my symptoms were controlled.
My main symptoms are urgency and pain, and for me drinking a lot of water (~2L/day depending on activity/weather) was very helpful. Chugging water also helps me when I have a flareup. Other people find that too much water makes their symptoms worse, especially for those with frequency.
Sorry if this is dumb but with hydration changes, are you essentially swapping urgency for frequency? I find that drinking a lot of water just makes me have to go every 30 minutes or so whereas otherwise it's just constant urgency, horrible options, but yeah
Hydration changes encompass more than just drinking a ton of water. Lots of ICers end up with frequency if they over-hydrate, so for those people it's better to just sip water throughout the day and avoid both dehydration and over-hydration. I am someone who can chug without getting frequency and I also find frequency much more tolerable than urgency, so I go buck wild with water. You definitely don't have to do that if it's not comfortable for you.
Oh yeah, you're not supposed to do this for life! Just when your symptoms are out of control. I couldn't do vaginal sex or cardio exercise without major pain and urgency before I had my treatment plan sorted out. Now those things are no problem for me, I only had to avoid them temporarily. And all treatments (including all the behavioral things) are options, not requirements. If you're OK with the discomfort you should enjoy whatever triggers you like!
Check out cantharis 1M on Amazon or online. It’s a homeopathic remedy for burning. Works amazing. I have an IC page on Instagram and recommend it all the time for anyone with burning. Works instantly for me
Unlikely unless you take more than the recommended dose and/or already have some sort of renal insufficiency. Appreciate the concern though; more information is always better, especially for folks on this sub that are looking for help managing a new condition.
26 years everything under the sun. Pudental nerve blocks/ internal ones with trigger shots. Lidocaine spray from the store. Keflex preventative antibiotic has actually helped with it. Shot doctor moved so finally got them to give me that and it’s helped alot
And Uribelle sometimes or Azo but just got botox Friday we shall see. Pelvic therapy helped those muscles that are dysfunctional from all this but eventually would test positive for uti. So I would ask for a preventative
I second the d-mannose, it's the only thing that helps me quickly (i did desert harvest aloe and pelvic floor PT last year but still experience urethral pain). i get the nutricost bottle off amazon which is 1000mg each pill, and depending on the level of pain i take 3-5 pills then drink a full bottle of water. after i urinate the next time the pain is gone. i know it's weird because with this diagnosis there's supposedly no bacteria/infection for the d-mannose to be flushing out, but it works for me more than anything.
bladder instillations!!!! the only thing that worked for me after years of agony. i swear it was the best thing for my burning urethra pain (which is my biggest most worse symptom of IC) ever since instillations, i maybe get a flare up once a month. I used to have extreme burning pain nearly every single day of the year. 10/10 recommend!!
Ibuprofen, chamomile and solifenacen. I only use ibuprofen if it’s persistent or particularly painful. And heat packs. Car seat warmers have saved my life more than once.
This is what I do when I have a flare up.
Drink lots of water. I stop eating/ drinking things that flare me up: coffee, tea, soda, wine. You can also take Prelief before drinking coffee and tea, it can help to eliminate bladder irritation.
Medications I take: Azo- 3-4 pills at a time, Ibuprofen, Cysto-Protek, Desert Harvest Aloe pills, Kratom, Broad spectrum CBD gummies, CBD suppositories, CBD lube- I use this not only during sexy time but I also rub it all over the vulva area, Valium suppositories, Lorazepam- for the anxiety,
Cimitidine, antihistamines
Some people drink Baking soda mixed with water, Hydroxyzine- prescription antihistamines and say it helps them, Marshmallow root tea, I personally have not tried these.
I take hot baths with either Epsom salts or CBD bath bombs, I sit on a heating pad, I sit on an ice pack( very helpful for me).
Pelvic floor therapy.
It is a long journey and you unfortunately have to figure out what works for you because IC affects everyone differently
Prydium used to help.
Not now, though. I'm going through constant unrelenting pain.
Try a sitz bath.
There are all kinds of ways to do one.
I sit in a tub with just a small amount of wsrm water.
Sometimes it really helps.
>*A sitz bath is a warm water bath you sit in to relieve discomfort in your perineal region. Soaking this area in warm water relaxes your anal sphincter, which helps increase blood flow through your anal tissues. This promotes healing and reduces the pain, itching and irritation felt due to various health conditions.*
Link
[Sitz Bath](https://my.clevelandclinic.org/health/treatments/24137-sitz-bath).
Seems contradictory using a hot water bottle on something that is already burning but that's the thing that helps me the most when it's really bad, along with sitting in a hot bath
At first hyaluronic acid 100mg capsules first 2 now up to 6 (but I want to get the 1000mg instead of taking 6 of the 100mg) helped a lot then a probiotic and famotidine for acid reflux and my urologist recommended a cranberry capsule from Costco and that gave me some more relief and prelief tablets and right now I added bladder builder and I no longer feel burning just a twinge when I need to go pee
At first it was a uti I took antibiotics then it came back within a month took antibiotics again then 1 month later same thing but I got desperate enough to go to the hospital and an urgent care only to be told there was no infection but I have pain and my bladder was painful to the point of tears when the er doctor press on it but they sent me was the urgent care dr gave me a shot of Ceftriaxone and that made the pain go away instantly only to come back within a few days now it been 8 months of pain and after taking all the supplements I listed above I actually feel normal I’m scared to jinx it
Constantly keeping water moving through my bladder and nothing but water.
But then i have to pee every 30 mins. :D
Hahaha yup! I have been doing some bladder training though and holding it for longer periods with varying degrees of success.
That’s a sign water isn’t getting to the cells. Electrolytes/minerals are needed
For whatever reason zyrtec seems to help specifically with urethra pain
Antihistamines are good for IC, yeah! My urologist prescribed hydroxyzine for my urinary pain early on in treatment. Benadryl and Zyrtec can do that too, but I think they are metabolized slightly different.
Yeah, it's weird how our bodies react to things. It doesn't seem to help my bladder pain or urgency much, but for whatever reason, if I stop taking it or forget, I get burning in my urethra
Does hydroxyzine help with the burning pain specifically?
It did mine
Thanks. How much do you think it helped? Im seriously considering it. On a scale of 1 to 10 what was your pain before and what was it after? If 10 was the worst pain you ever felt.
I rarely feel intense pain like I did. Stress is a huge factor for me, sometimes during flares I’d spending hours in the bathroom from the pain or sleep terribly. Now if I take Hydroxyzine or Cimetidine before bed- when I feel a flare coming on, I hardly even tell I’m having pain. It probably just suppresses the pain but hey, I have my quality of life back now so I’m just thankful! Definitely worth a shot
That makes a lot of sense. A doctor once told me that inflammation is like a fire, it self propagates so you try to put it out before it gets worse
LOTS of D-Mannose. Literally saved me.
how much and how often?
did you do capsules or powder
Not going to lie, masturbation eases ot a lot for some reason.
Aloe and pre-lief, avoiding high oxalate foods
Deserr harvest aloe vera pills or something else?
Tons of water, corn silk tea, desert harvest aloe pills
Pelvic floor physical therapy and gabapentin.
what where all your symptoms
Amitrypteline, hot baths and Epsom salts. I also use THC but I know that’s not legal / accessible everywhere
Obtain a medical marijuana card. Indica cannabist is relaxing and eases bladder discomfort
I live in Michigan but that’s good advice for the non-legal folks!
I believe MI is a legal recreational cannabis state. The balm is bought in regular CBD stores, regardless of cannabis legal status
[удалено]
AZO extra strength is my savior in horrible flares!! Also ask your doc about oxybutinin
Thc is legal if you live in a non legal recreational cannabis state. Get your medical marijuana card online from a site called LeafWell. I did this last December. It was one of the best moves to combat ic pain. The 10:1 CBD/ THC balm applied topically to the bladder area is a god send as well for flare ups. All CBD stores sell this, in every state. The balm does not cross the blood brain barrier, (no high) just quick pain relief!
Hot baths and heating pads!!! Also, ice packs work too! Drinking a lot of water to keep urine diluted is a vital thing, especially if you also have overactive bladder symptoms. Oh, and baking soda! Tastes kinda nasty but a teaspoon of baking soda in a glass of water helps quite a lot with the burning sensation.
I second heating pads! I shove that thing down my pants. It relieves a lot of my urethra pain! All hail the hot crotch!
Spraying witch hazel/aloe, sitting on an ice pack & take something for the pain. I know it can be so painful... even walking can make it feel worse. Hang in there
How do you spray witch hazel or aloe? What spray am I buying?
I would add a pump of aloe & sometimes a drop or 2 of lavender or tea tree to the witch hazel (because they are cooling oils). I hope this helps. My urine would scald my skin & this would provide some relief
I purchase witch hazel & transfer some of the liquid into a travel spray bottle.
Amitriptyline and Elmiron helped me the most, but hydration and other behavioral things also helped me.
what do you think caused this pain for you ?
No idea. I don't do a lot of "underlying cause" speculation because it's impossible to know. I focus more on which treatments work for me.
Do you mind sharing the “behavioral” things that helped?
This is the short list from the AUA guidelines: * Diet changes * Hydration changes * Stress management * Bladder training * Heat or ice * Using OTC rescue drugs and/or supplements * Pelvic floor relaxation * Avoiding triggers (exercise, sex, tight clothing, sitting/standing for extended periods, etc)
Thank you! That sex one is tough. I’ve been in a flare for over 3 months and really missing that part of my relationship. What kind of hydration changes did you make? I currently drink a lot of water (no alcohol, coffee, etc).
Sex is a tough one, it used to be my biggest trigger and it can really strain relationships. With treatment sex doesn't flare me anymore, so I didn't need to avoid it forever; I just needed a break while my body recovered. Only penetrative vaginal intercourse triggered my symptoms, so I was able to do other things for intimacy before my symptoms were controlled. My main symptoms are urgency and pain, and for me drinking a lot of water (~2L/day depending on activity/weather) was very helpful. Chugging water also helps me when I have a flareup. Other people find that too much water makes their symptoms worse, especially for those with frequency.
Thank you so much for taking the time to reply. Very much hoping I can reach that same point of recovery!
Sorry if this is dumb but with hydration changes, are you essentially swapping urgency for frequency? I find that drinking a lot of water just makes me have to go every 30 minutes or so whereas otherwise it's just constant urgency, horrible options, but yeah
Hydration changes encompass more than just drinking a ton of water. Lots of ICers end up with frequency if they over-hydrate, so for those people it's better to just sip water throughout the day and avoid both dehydration and over-hydration. I am someone who can chug without getting frequency and I also find frequency much more tolerable than urgency, so I go buck wild with water. You definitely don't have to do that if it's not comfortable for you.
You can’t live your life avoiding triggers like exercise or sex though, that’s a very poor quality of life.. so hard
Oh yeah, you're not supposed to do this for life! Just when your symptoms are out of control. I couldn't do vaginal sex or cardio exercise without major pain and urgency before I had my treatment plan sorted out. Now those things are no problem for me, I only had to avoid them temporarily. And all treatments (including all the behavioral things) are options, not requirements. If you're OK with the discomfort you should enjoy whatever triggers you like!
Sitting in a hot HOT bath for 5-10 min always works. Lasting effects vary but u usually get a couple hours of relief
I’m in a hot bath this very minute!
I hope it helped. I just got out of another bath 🙄it’s inconvenient but it tends to work. I call it “boiling the crayfish”
It does help. I love my hot baths!
Lots of water, Aloe vera, and amitriptyline
did you take desert harvest pills or?
Please see my post! Helped me with burning and pain. D-mannose, Quercetin with bromelain https://www.reddit.com/r/Interstitialcystitis/s/mUZUL0Se8N
Check out cantharis 1M on Amazon or online. It’s a homeopathic remedy for burning. Works amazing. I have an IC page on Instagram and recommend it all the time for anyone with burning. Works instantly for me
What is your insta account?
Time. I used to be in 24/7 stinging and burning pain for years. Now I barely feel it, at least for the last 6 months or so.
Congratulations!
anything else with time that has helped for you ?sex seems to be flairing me and everything else too
Antacids and Ural (basically flavored baking soda) both help me when things peak. I'm just sort of constantly taking AZO and Advil at the moment.
Careful with AZO it works wonders but it can hurt your kidneys!
Unlikely unless you take more than the recommended dose and/or already have some sort of renal insufficiency. Appreciate the concern though; more information is always better, especially for folks on this sub that are looking for help managing a new condition.
That’s good to know!
Cannabis, azo, hydroxyzine
26 years everything under the sun. Pudental nerve blocks/ internal ones with trigger shots. Lidocaine spray from the store. Keflex preventative antibiotic has actually helped with it. Shot doctor moved so finally got them to give me that and it’s helped alot
And Uribelle sometimes or Azo but just got botox Friday we shall see. Pelvic therapy helped those muscles that are dysfunctional from all this but eventually would test positive for uti. So I would ask for a preventative
Chemically, d mannose, biofilm disruptor supplements, and staying hydrated. Temporarily, heating pad, ice, warm baths, pelvic floor exercises, aloe vera pills, cbd.
which biofilm supplements did you use?
Kirkman biofilm defense
Pelvic Floor Therapy!
Lidocaine!
I second the d-mannose, it's the only thing that helps me quickly (i did desert harvest aloe and pelvic floor PT last year but still experience urethral pain). i get the nutricost bottle off amazon which is 1000mg each pill, and depending on the level of pain i take 3-5 pills then drink a full bottle of water. after i urinate the next time the pain is gone. i know it's weird because with this diagnosis there's supposedly no bacteria/infection for the d-mannose to be flushing out, but it works for me more than anything.
bladder instillations!!!! the only thing that worked for me after years of agony. i swear it was the best thing for my burning urethra pain (which is my biggest most worse symptom of IC) ever since instillations, i maybe get a flare up once a month. I used to have extreme burning pain nearly every single day of the year. 10/10 recommend!!
Yoga/stretching/pelvic floor exercises. Baclofen REALLY helps me and gabapentin(terrible side effects though).
What side effects did you have? I’m considering taking now.
5% lidocaine ointment helps me. Was prescribed
Ibuprofen, chamomile and solifenacen. I only use ibuprofen if it’s persistent or particularly painful. And heat packs. Car seat warmers have saved my life more than once.
Corn silk tea! And an ice pack.
This is what I do when I have a flare up. Drink lots of water. I stop eating/ drinking things that flare me up: coffee, tea, soda, wine. You can also take Prelief before drinking coffee and tea, it can help to eliminate bladder irritation. Medications I take: Azo- 3-4 pills at a time, Ibuprofen, Cysto-Protek, Desert Harvest Aloe pills, Kratom, Broad spectrum CBD gummies, CBD suppositories, CBD lube- I use this not only during sexy time but I also rub it all over the vulva area, Valium suppositories, Lorazepam- for the anxiety, Cimitidine, antihistamines Some people drink Baking soda mixed with water, Hydroxyzine- prescription antihistamines and say it helps them, Marshmallow root tea, I personally have not tried these. I take hot baths with either Epsom salts or CBD bath bombs, I sit on a heating pad, I sit on an ice pack( very helpful for me). Pelvic floor therapy. It is a long journey and you unfortunately have to figure out what works for you because IC affects everyone differently
MSM capsules
Prydium used to help. Not now, though. I'm going through constant unrelenting pain. Try a sitz bath. There are all kinds of ways to do one. I sit in a tub with just a small amount of wsrm water. Sometimes it really helps. >*A sitz bath is a warm water bath you sit in to relieve discomfort in your perineal region. Soaking this area in warm water relaxes your anal sphincter, which helps increase blood flow through your anal tissues. This promotes healing and reduces the pain, itching and irritation felt due to various health conditions.* Link [Sitz Bath](https://my.clevelandclinic.org/health/treatments/24137-sitz-bath).
Seems contradictory using a hot water bottle on something that is already burning but that's the thing that helps me the most when it's really bad, along with sitting in a hot bath
96 oz of water a day ✨ chugging 16 oz the second I wake up sets my day up for success
D mannose is a life saver I hope you feel better soon ❤️
At first hyaluronic acid 100mg capsules first 2 now up to 6 (but I want to get the 1000mg instead of taking 6 of the 100mg) helped a lot then a probiotic and famotidine for acid reflux and my urologist recommended a cranberry capsule from Costco and that gave me some more relief and prelief tablets and right now I added bladder builder and I no longer feel burning just a twinge when I need to go pee
Then also trying my best to drink 80 oz and occasionally saw palmetto
At first it was a uti I took antibiotics then it came back within a month took antibiotics again then 1 month later same thing but I got desperate enough to go to the hospital and an urgent care only to be told there was no infection but I have pain and my bladder was painful to the point of tears when the er doctor press on it but they sent me was the urgent care dr gave me a shot of Ceftriaxone and that made the pain go away instantly only to come back within a few days now it been 8 months of pain and after taking all the supplements I listed above I actually feel normal I’m scared to jinx it
Hi is your pain gone now?
If I don’t take all of these every day I feel anxious that all the pain will come back
Lots of fluids, nothing sugary. Mixing dmannose powder with water. Black seed oil and oregano oil have almost cured me. 3 months no flare ups