I am so sorry you are suffering with this. Although we do not yet have a cure, there are many treatment options that can help manage symptoms. Please discuss your options with a urogynecologist or pelvic pain specialist.
Try cutting out any foods you think might be a problem snd very slowly reintroduce. Make sure you take adequate vitamins. High histamine, nightshades, citrus high sugar etc and high carb can cause the body to attack itself.
Try taking D-Mannose powder as a supplement. I have IC and it works really well for me!! I tried controlling with diet and had no luck but D-Mannose yes. It’s worth a try!
I have IC and my main symptoms are from certain foods as well as sex. What has helped me the most is eliminating sugar/alcohol from my diet and taking amitriptyline. I also go to a physical therapist who specializes in the spine, and she has been having me stretch my (tight and stuck on the left side only) upper back because she believes the nerves are getting blocked from properly sending signal to my bladder (which can be caused by pelvic trauma as well, which mine would be chronic UTIs). She has been able to help relieve my IC symptoms just by working on my upper back. The research is out there and I'm hopeful this will become more common knowledge and help others. Sending up prayers of comfort, peace and understanding to all who suffer from IC and those impacted in their lives. 💖
It's crazy, Anywhere i go, i always try to locate a washroom area. No Uti nor bacteria found in my culture. I will be seeing a urologist in early February i can't wait. I also have +1 blood in my urine. Im very worried, I pray that it's not what we all fear..Love to all you wondetful people. Lets take care of our health🙏💕
I recommend going to a PT for anyone who has this. Mine went from daily, keeling over level of pain to just a tinge once or twice a week for the past month. Have seen a dozen doctors the past two years and so far my pt is the only one that has shown any kind of understanding and care for my pain. She’s helping me regulate my nervous system so I can get out of the fight or flight mode that this chronic pain has put me in and has somehow unblocked some nerves in my spine so that I have normal feeling in my legs, pelvis, and abdomen again. I tried so hard to heal it on my own but it was putting so much stress, guilt, and feeling of failure on me that I see now why none of it was working.
I had what seemed to be interstitial cystitis. It turned out I had a problem with oxalates, a type of plant toxin. A long course of antibiotics had gotten rid of the oxalate-degrading bacteria in my gut. So what happens in that case is the oxalates start to form sharp microscopic crystals that get deposited in tissues and cause pain. It took four months for my gut to fix itself. Four months of pain! Even some people who weren’t on antibiotics can have oxalate issues. It can be a good idea to avoid high-oxalate foods.
@@sleeponbednotclc9023 no testing. The doctors were clueless. What happened to me just matched the symptoms of oxalate crystals. It took me months to get better. Then unfortunately, a doctor prescribed antibiotics for my infected tooth and the symptoms came BACK. That just goes to prove that it was the antibiotic issue. Now, after another two months, I’m recovering again. I think if I can manage to stay off antibiotics, I will build up to the normal level of oxalobacter formigenes (the oxalate-degrading bacteria).
I have this… it’s so hard. I was diagnosed last year and it feels like I was just told I have it then given no tools. Not to mention doctors treated me like I was gross and full of STDS when I had already been tested MULTIPLE times for them all and tested negitive… I still struggle with it all the time. I also have Crohn’s disease. I think they’re related
I too currently have IC and tried everything but recently found a TH-cam video about the connection between this, uti’s and oxalates in fruits, veggies and salads. Going back to Carnivore again as I never had this problem when I just ate meat, fish and real dairy
I was diagnosed with this, and have had the cystoscopy done and now I'm still suffering with this painful bladder issue. Almost feels like period cramps sometimes. Ugh I am gonna try to do the food 🍲 thing and see how that works. I've been to the Urologist, and the medication that they give me usually doesn't help. Even Gabapentin does nothing for me.
Have you noticed any effect with antihistamines? I noticed I had a mostly pain free summer last year and had a theory that it was because I was taking allergy medication, so I started taking them again and sure enough it was working better than ibuprofen and muscles relaxers for pain relief. I think I was allergic to something I was eating and it primarily showed up as inflammation in my bladder for whatever reason.
I hope food elimination has helped you. I found eliminating tea (any kind) helped a lot. I also can't drink alcohol. If I have so much as a small juice glass of beer, the symptoms will drive me crazy for 2-3 days. I've even cut back on the spaghetti sauce I use and I think this also helps prevent symptoms.
I have been drinking celery juice for cystitis, per Medical Medium and I can tell the difference within a week. What a relief! I also take curcumin, cranberry extract, quercetin, propolus, and vitamin C. Hope this helps. Feel free to reply if you have any questions or recommendations. thanks.
I take hydrocodone, amitriptyline and gabapentin. To get to sleep I take ambien or I wouldn't get to sleep because I would just be up peeing for hrs. Also lorazapam to get back to sleep in middle of the night. I just drank some water with baking soda because of a lot of pain today. It seems to cut the acid in bladder. I just had some watermelon and it caused the bladder to react. Sometimes I can eat it and sometimes I can't eat it.
I had a cystoscopy and it showed irritation and a diverticulum. I've tried the d mannose supplement, dietary changes, anti histamines, elavil which I had to stop due to staggering, and bladder installations. My pain has continued to progress and am now on norco. I can't take NSAIDs as i am on coumadin. So, i am at the point of mostly being on the couch with a heating pad, drinking water and able to some activity for about 45 minutes 1x2 times a day. I can't stand all the excitement of my current life.
I've had ic with Hunners Ulcers for years and no treatments have helped me. I've eliminated milk, wheat, soy, oxylates, inflammatory foods and have lost 25 pounds. My weight is dangerously low, Elmiron can cause blindness years after it's stopped, Pelvic floor therapy is useless . I'm allergic to steroids so no instillations for me!. No pain management will treat this. This is NOT something that's ever gotten under control for me. Just diagnosed with Sjogrens.What misery.
Hello all, I was diagnosed with interstitial cystitis for many years. Nothing helped, not the traditional treatment, not the antibiotics. I´ve been on vaginal HRT (hormone replacement therapy, estrogen) for 6 months now and the pain stopped within the first few days. Please note that postmenopause can be the reason for those symptoms.
I hurt sooo bad. Diagnosed in 2008. Living gets more painful every day. Need angels to take me HOME 🥵😭💦😱🥵💔I’m pain exhausted. No life at all. Why am I still here?
Try to find a good urologist, keep trying until you find someone compassionate and that will listen. It is a dreadful condition and the pain is nothing that can be understood by most people.
Girlfriend has suffered for last 6 months with this. Run all the tests. Anti biotics work only for two weeks. Will read all the comments & try some helpful tips from others. If anyone has any other useful comments please do post.
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We need a cure for Interstitial Cystitis. It is a miserable and chronic pain disease that is inhumane to live with.
I am so sorry you are suffering with this. Although we do not yet have a cure, there are many treatment options that can help manage symptoms. Please discuss your options with a urogynecologist or pelvic pain specialist.
I agree. I think I might have it (haven’t been diagnosed yet because I’m scared to go to the doctor).
Try cutting out any foods you think might be a problem snd very slowly reintroduce. Make sure you take adequate vitamins. High histamine, nightshades, citrus high sugar etc and high carb can cause the body to attack itself.
Try taking D-Mannose powder as a supplement. I have IC and it works really well for me!!
I tried controlling with diet and had no luck but D-Mannose yes. It’s worth a try!
I cured my interstitial cystitis.
I have IC and my main symptoms are from certain foods as well as sex. What has helped me the most is eliminating sugar/alcohol from my diet and taking amitriptyline. I also go to a physical therapist who specializes in the spine, and she has been having me stretch my (tight and stuck on the left side only) upper back because she believes the nerves are getting blocked from properly sending signal to my bladder (which can be caused by pelvic trauma as well, which mine would be chronic UTIs). She has been able to help relieve my IC symptoms just by working on my upper back. The research is out there and I'm hopeful this will become more common knowledge and help others.
Sending up prayers of comfort, peace and understanding to all who suffer from IC and those impacted in their lives. 💖
It's crazy, Anywhere i go, i always try to locate a washroom area. No Uti nor bacteria found in my culture. I will be seeing a urologist in early February i can't wait. I also have +1 blood in my urine. Im very worried, I pray that it's not what we all fear..Love to all you wondetful people. Lets take care of our health🙏💕
I recommend going to a PT for anyone who has this. Mine went from daily, keeling over level of pain to just a tinge once or twice a week for the past month. Have seen a dozen doctors the past two years and so far my pt is the only one that has shown any kind of understanding and care for my pain. She’s helping me regulate my nervous system so I can get out of the fight or flight mode that this chronic pain has put me in and has somehow unblocked some nerves in my spine so that I have normal feeling in my legs, pelvis, and abdomen again. I tried so hard to heal it on my own but it was putting so much stress, guilt, and feeling of failure on me that I see now why none of it was working.
What is PT?
@@janajanis9268pelvic therapy. Physical therapy for your pelvic floor.
@@janajanis9268I was confused myself! Maybe it means Physical therapist.
I had what seemed to be interstitial cystitis. It turned out I had a problem with oxalates, a type of plant toxin. A long course of antibiotics had gotten rid of the oxalate-degrading bacteria in my gut. So what happens in that case is the oxalates start to form sharp microscopic crystals that get deposited in tissues and cause pain. It took four months for my gut to fix itself. Four months of pain! Even some people who weren’t on antibiotics can have oxalate issues. It can be a good idea to avoid high-oxalate foods.
How did you figure that out? Microbiome testing?
@@sleeponbednotclc9023 no testing. The doctors were clueless. What happened to me just matched the symptoms of oxalate crystals. It took me months to get better. Then unfortunately, a doctor prescribed antibiotics for my infected tooth and the symptoms came BACK. That just goes to prove that it was the antibiotic issue. Now, after another two months, I’m recovering again. I think if I can manage to stay off antibiotics, I will build up to the normal level of oxalobacter formigenes (the oxalate-degrading bacteria).
there are some other people saying the same thing, i also believe i have the same issue as you hope that it is
Oxalate= he’ll on all bladder and kidney issues.
I have this… it’s so hard. I was diagnosed last year and it feels like I was just told I have it then given no tools. Not to mention doctors treated me like I was gross and full of STDS when I had already been tested MULTIPLE times for them all and tested negitive… I still struggle with it all the time. I also have Crohn’s disease. I think they’re related
It's likely they're related. I have Sjogrens [autoimmune disease] and also have ic.
I too currently have IC and tried everything but recently found a TH-cam video about the connection between this, uti’s and oxalates in fruits, veggies and salads. Going back to Carnivore again as I never had this problem when I just ate meat, fish and real dairy
I was diagnosed with this, and have had the cystoscopy done and now I'm still suffering with this painful bladder issue. Almost feels like period cramps sometimes. Ugh I am gonna try to do the food 🍲 thing and see how that works. I've been to the Urologist, and the medication that they give me usually doesn't help. Even Gabapentin does nothing for me.
Have you noticed any effect with antihistamines? I noticed I had a mostly pain free summer last year and had a theory that it was because I was taking allergy medication, so I started taking them again and sure enough it was working better than ibuprofen and muscles relaxers for pain relief. I think I was allergic to something I was eating and it primarily showed up as inflammation in my bladder for whatever reason.
I hope food elimination has helped you. I found eliminating tea (any kind) helped a lot. I also can't drink alcohol. If I have so much as a small juice glass of beer, the symptoms will drive me crazy for 2-3 days. I've even cut back on the spaghetti sauce I use and I think this also helps prevent symptoms.
I have been drinking celery juice for cystitis, per Medical Medium and I can tell the difference within a week. What a relief! I also take curcumin, cranberry extract, quercetin, propolus, and vitamin C. Hope this helps. Feel free to reply if you have any questions or recommendations. thanks.
Is quercetin effective?
@@mikeevillacruztremor5706 only to an extent. Its not a miracle cure but combined with other things, it seems to help.
What other things mm suggest for ic except celery juice
Celery juice WORKS! Try it. This is the only thing that has worked for me.
So confusing b/c celery is a high oxolate food
Thank you for the information! 💚
I have had it for many years. Probably 50 years. I have had all of the tests etc. It is a miserable. It has made for a difficult life.
What do u take to relieve the pain?
I take hydrocodone, amitriptyline and gabapentin. To get to sleep I take ambien or I wouldn't get to sleep because I would just be up peeing for hrs. Also lorazapam to get back to sleep in middle of the night. I just drank some water with baking soda because of a lot of pain today. It seems to cut the acid in bladder. I just had some watermelon and it caused the bladder to react. Sometimes I can eat it and sometimes I can't eat it.
@@carlasenecal3434do you take hydrocodone daily and in what dose... Does it cause any side effects
the sound clips in-between is very distracting and irritating but am grateful for the pro tips
I had a cystoscopy and it showed irritation and a diverticulum. I've tried the d mannose supplement, dietary changes, anti histamines, elavil which I had to stop due to staggering, and bladder installations. My pain has continued to progress and am now on norco. I can't take NSAIDs as i am on coumadin. So, i am at the point of mostly being on the couch with a heating pad, drinking water and able to some activity for about 45 minutes 1x2 times a day. I can't stand all the excitement of my current life.
T U doctor. I take antihistamine s well. Heating pad sure help.
I've had ic with Hunners Ulcers for years and no treatments have helped me. I've eliminated milk, wheat, soy, oxylates, inflammatory foods and have lost 25 pounds. My weight is dangerously low,
Elmiron can cause blindness years after it's stopped, Pelvic floor therapy is useless . I'm allergic to steroids so no instillations for me!. No pain management will treat this. This is NOT something that's ever gotten under control for me.
Just diagnosed with Sjogrens.What misery.
Try with answer yourself. Where you supres yourself.try with karmic diagnostic and history from your family. BERT HELLINGER book
Hello all, I was diagnosed with interstitial cystitis for many years. Nothing helped, not the traditional treatment, not the antibiotics. I´ve been on vaginal HRT (hormone replacement therapy, estrogen) for 6 months now and the pain stopped within the first few days. Please note that postmenopause can be the reason for those symptoms.
I hurt sooo bad. Diagnosed in 2008. Living gets more painful every day. Need angels to take me HOME 🥵😭💦😱🥵💔I’m pain exhausted. No life at all. Why am I still here?
There’s hope. Read the comments and watch other videos, try what others are trying. Don’t give up, ok?
I want angels to bring me home as well. Im 26 and my life is not worth living anymore
Read the comments and watch other videos, try what others are trying.@@ariannateodora5469
I know how you feel. I read ic is the main cause of suicide in women ages 20-24. Can't believe there is NO pain management for this,
BLADDER is the house of peace,look into yourself in whtch part of yourself is great stres or sorrow
Is urogesic blue ok to take long term?
Why are you referring to only women? I'm a male with thus condition.
I'm male and I suffer from it badly.
Try to find a good urologist, keep trying until you find someone compassionate and that will listen. It is a dreadful condition and the pain is nothing that can be understood by most people.
It's ruined my life
ITS DESTROYED MY LIFE 8 MONTHS OF NONSTOP PAIN
Girlfriend has suffered for last 6 months with this. Run all the tests. Anti biotics work only for two weeks. Will read all the comments & try some helpful tips from others. If anyone has any other useful comments please do post.
There's no support where I live
You are so right, Same here.
How about estrogen?Before my menstruatiol cycle I feel much better for 2 days,when there's hormone change,and after that everything goes back
Sea moss
A doctor told me oral estrogen makes ic worse. I use vaginal estrogen and don't think that helps me all that much.
@@vivavita3769 so then,what really helps
I stopped eating sugar & drinking too many liquiids & my issues have gone away.
Can men get IC??
Martinez Barbara Hernandez Christopher Miller Helen
Don’t forget men