Managing Interstitial Cystitis Flares (Interstitial Cystitis Network)
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- Опубліковано 8 чер 2009
- Are you newly diagnosed and confused about what IC flares are? ICN President Jill Osborne talks about the two most common types of flares, how to recognize them, manage them and, hopefully, prevent future flares.
Thank you if it wasnt for you I would be suffering. You all have calmed my anxiety knowing there are things you can do to help it. I been afriad to even eat right now.
Me too. I am afraid to eat anything. This vlog is very helpful. I took 2 AZO from Amazon. It help the pain very fast but you can’t take it longer than 48 hours. I am also trying aloe Vera for bladder repair. I am going to drop B1 and see. I have spent a fortune in vitamins and supplements. I am going to try Prelief and tums this week.
I had pelvic floor surgery 5 weeks ago but also 5 severe attacks of this after surgery. I think it is my bladder irritation or a nerve problem.
Its so sad. I've been accused of having STDs. Last year when I had a flare up and went to the ER a doctor told me he thought it was an STD and said I needed to accept the fact my husband was cheating on me. I was sad because he never even considered it being bladder related. People who suffer from this have trouble getting help because doctors always think its some type of infection.
That is so obnoxious! So rather than try to fix the issue he's focused on your husband "cheating." And I'm sure the doctor was a male. I'm sorry you went through that.
The same thing happened to me a few years back when this first started for me! It’s very humiliating!
I love you, Jill Osborne. I feel like you are a dear friend. Thank you, thank you, thank you for your service to IC sufferers...specifically me! I have watched most all your videos. They are so helpful. Brings tears to my eyes when you describe the exact experiences I have had for the last five years. Bless you.
Same here! I’m so very thankful for Jill!!
Thank you so much! I was diagnosed in 1992 and I am also in the Many faces of IC and believe it or not, I really didn't know there were two types of FLARES! I guess I knew in a way..but I had not heard it explained this way. Thank you alot. Holly
I'm a male with this condition. I've run into the same information barriers that you have, and I'm working to break down every single one of them. We are not alone either.
Health Connection Me too! I also tell everyone I can about it. More research is needed, and without more awareness little will be done.
Yea we definitely need more awareness!
Me too, especially at the opening. I would love to talk to more people with this issue specifically.
I believe the root of my IC is a nerve problem. I heard you mention in another video that IC may be caused my trauma. My IC started after a cervix swab procedure I had done. The fact that the flares can be both in the pelvic floor muscles and the bladder wall tells me there is a connection between these two areas.
It feels like a nerve issue and maybe the inflammation, injuries to the bladder wall and loss of bladder lining are due to changed nerve "messages" to the bladder or lack thereof.
Pudendal nerve. Check into it.
It's amazing to even see this topic being discussed, because when I was first diagnosed with IC over 23 yearsago, after suffering with symptoms seven years before that, NOBODY had even heard of it. Anyways, I have a horrible case of IC that does wax & wane, but about 5 years ago, I started noticing it getting worse than ever & finally requested another bladder installation. They discovered I had dozens of patches of ACTUAL cystitis that were NOT testing positive in my urine cultures, because th
How do you know that it wax and wanes?
Thanks to all your advice, People like me who got this problems needs people like you. I really appreciate you.
Desert Harvest aloe vera capsules have helped me so much. They work like d mannose. I am so glad I ordered them not pain or burning. But you have to consistently take them
Thank you Jill!!
My uro suggested I take desert harvest aloe vera capsules, and I also take a colostrum supplement which has been the ONLY thing that has cut my pain down by about 50% after 8 years of suffering. Diet is a huge part, I cut out everything that has word "acid" in it and anything with "nitrate" even thiamine mononitrate (B1) and it def helps, I read every label and it has been to my benefit.
@gumpishelf Yes, 78 hours isn't nearly long enough. You've got to be on the diet for atleast three months to really see a difference. The bladder heals very slowly!
Yes, IBS and IC symptoms often interact. So, that "constant sensation of urgency" even when your bladder is empty is a typical sign of a very very irritated bladder wall. Straining is never good because it messes with your normal muscle tone and tension. Also, if you can't start your urine stream and your bladder is full, that's also a sign of pelvic floor tension. I think you need to call your doc ASAP, ask for a pelvic floor assessment too!
Pain before urination is usually bladder wall pain. Pain after urination is usually muscle or bladder spasms.. and is characterized by a "burning sensation" because the muscles are working hard and building up lactic acid.. which creates that burning sensation.. usually in the vagina!
So burning inside the vagina is a symptom of ic ? I have bladder pressure and burning in vagina
And, in the meantime, if it's your bladder wall.. or perhaps ulcers... you've got to be on that diet. 9 times out of 10, when someone calls our office sobbing in pain, they admit that they are still drinking coffee, soda, vitamins, etc. etc. Diet is critical here. Are you following the diet?
Hi Jill. Your video was very informative--thank you. One suggestion: your strategies, description, and comments seemed to be specific to women. Even the IC has a higher prevalence among women; it would be helpful to expand your comments so they are more relevant to male sufferers as well. Thanks for your consideration.
We have a flare resource guide on our website.. check that out! Back pain can happen to IC patients for sure.
@kessevil Yes it can but usually it's microscopic blood. Visible blood in the urine is much less frequent unless the patient has Hunner's Ulcers. Most doctors would agree that visible blood should always be reported to your doctor, especially if you are peeing clots or bright red blood.
Ooooh.... thank you!!! I hope you're feeling better!!!
How can I get a doc to prescribe an opiate for flares again at this point in time? This is a terrifying thought to me (to have no pain management bc nobody will accept me for ic, and dismiss my other condition which is idiopathic) because I also have neuropathy, that is SO unbearable during flares. So not just my undercarriage burns like that but many other parts of my body. The new "opiate crisis" has screwed me and alot of people over. I'm so scared for what my quality of life will turn into again. You should make a video about what we should be doing about that/ the ignorance of most healthcare professionals NOT to recognize my body is in crisis. I do what I can to advocate but all my doctors refuse to carry on with the treatment I've had for the past 6 years (which I use *with* vaginal valium) and I've not upped the dose except once in 6 years and don't abuse it!
And side note - I was on gabapentin but had to stop it because it impaired my cognition and memory SO MUCH that now I'm in speech therapy.
I'm at a total loss about what to do with these comorbid conditions that seem to feed off one another. I can't think straight from the pain and that's why gabapentin was my choice at first,I couldn't handle the pain I was stuck in bed. Pain medication that is one time use works because it affects my cognition less because I take it less. Yet, drs and the whole system is brushing me, and so many others LIKE ME off.
If your heart feels for any part of my story please respond with any advice and I'll be so grateful!
Thank you here it is 3 am I'm in terrible pain
JILL! I just wanted to take a brief moment to smile and say, "I LOVE YOU!"
Okay, now back to writhing in pain...
Does anyone ever have constant pain in their right lower abdomen?Mine will be constant pain there for a few days to a week.Even radiating to my back or down my my right leg.Right now I've been having pain there and in tears when my bladder is full or when I pee.My Dr. is on vacation and I'll go to ER if it does not stop.I even take percocet 10 5x a day.
Hello Jill, can you please tell us what is best for severe frequency? Ty
@icnjill Yup been following the diet for years now. Still have soda and chocolate on and off but see no connection with that and my pain. I'll drink soda and be fine the next day but I'll drink water and feel horrible afterwards..just an example. That's why I dont think the diet makes a difference, at least not in my case. I've had this frequency/urgency feeling for over a year and a half. Longest break was 3 weeks a couple of times but NEVER have I felt like this for only hours or 2 days. :(
Visible blood in the urine is much more rare in IC patients... however microscopic blood in our urine (not visible to the naked eye) is fairly common. However, in patients which abuse ketamine, for example... hematuria (i.e. blood in the urine) can be profuse.
@supervixen404 definitely not. My first year was horrible! It takes time and you have to try to figure out what could be irritating your bladder so badly?? Are you following the diet??
i'm alone. undiagnosed..tired of hopping from one doctor to another..tired..in pain
Arosle1 same here my friend ! Would love to know how you are doing now?
You are amazing thanks for the information :)
You are definitely not alone Aro. You have millions of IC sisters who are sharing your struggle. Have you seen our website?? We have a database of doctors that you can check to try to find a doctor who is truly interested in treating IC. We also have a flare management guide, pain tips and much more!
Ive problem with Uti bladder and kindeys - internal pains for two year- lately this 6 month i ve been in ER few time - end having 9 different antibodies ,two anti fungal yeast infection ...last doctor visit internal result were clear and puzzled ..called another spec list keep put off one month waiting ...Just cant go back to Er nothing they can do for me ...
Any advice is appreciated. Can a flare cause back - pain?. This almost makes me suspect a kidney infection, But my doctor suspects that I have IC, Because urine tests are always negative. So, Do you think my back - pain is IC related?. Or I actually do have a UTI this time?.
Sadly, some doctors just don't believe that IC is real despite plentiful research and more than $100 million dollars invested into research about IC by the National Institutes of Health. If your doctor was disrespectful, absolutely look for someone else. Please come visit our website to learn more about IC. Diet can play a huge role in triggering pain and discomfort. Come our website!
There's a difference between pushing and urgency. If you feel like something is falling out of you, or something is being pushed back up inside you or like you are carrying something heavy in your pelvis, that is usually pelvic floor dysfunction. On the otherhand, if you feel pain as your bladder fills up with urine that is slightly relieved, perhaps even slightly, by urination, that is bladder wall pain. 9x out of 10, severe pain is directly related to food. Are you following the IC diet?
Hi Jill. I’m a male living with IC nearly two years now. Do you have videos that lean more towards the males? Or is it just the same triggers of flare ups but different body parts. I practice the whim hof method, yoga stretches etc to manage my flare ups. Stress and diet triggers it intensely.
Can I buy these Products in the uk ? I'm sick of pain have been getting depressed with it now don't help my bladder that I'm pregnant my bladder now is in excruciating pain :( yesterday I was in so much pain
Thank god I have found you . I've had IC for the last 4 years I've had a 4 month pain free due to been prescribed pregabalin .any one else on this medication? I am now in the grip of a flair up and feel that utter doom that the IC is back to ruin my life .i feel drugged up and it's affecting my life . Thanks for reading
Had to go off it because of side affects which affected my cognition.
To the point that my memory got so impaired I'm now in speech therapy.
I constantly have a dull pain in my suprapubic area. I also have swollen lymph nodes in my groin, hematuria together with extra pain during my period, andddd alcohol KILLSS me. I had to stop drinking altogether. Sometimes even a single glass of wine aggrevates my bladder.
But I don't have burning when peeing. However, I feel the need to pee alot more, and I haven't changed the amount of liquids I consume.. I'm pretty sure I have this. How serious can this get?
I've lived with this dreaded disease for almost 3 years now and am going to attempt a gluten-free diet since I've heard it's helped many people. I notice that if I'm eating a lot of stuff with wheat in it, sometimes it depends, but it can give me awful flares and within a day or two I feel much better if I don't eat so many gluten products. Has anyone else tried this approach? Also, are there any other men out there suffering with this? It seems a lot of the info I find is more geared to women.
Am I the only one who's been in an INCREDIBLY HORRIBLE FREQUENCY/URGENCY FLARE FOR OVER A YEAR?????I'm guessing yes.
You can ask tons of questions about IC and meet others in the IC Network support forum. You need to visit our website to do that... and, unfortunately, I can't put the address here in this reply area. Just google Interstitial Cystitis Network ... and you'll find a link right at the top of the page. We also offer coaching services that you can sign up for!
My urologists refused to prescribe me any pain meds after I tried antidepressant medication that did nothing for me. They told me to work on my diet. I did and it did not subside the pain (it would get worse if I ate triggering foods, but does not stop the pain afterwards). Its been 2 weeks of pain. My hands shaking, I feel like vomiting. I can't afford 911. The only thing that was a hit and miss was hot baths with himalayan salt. I finally turned to smoking some weed n felt better. It will do until my 3 week waiting for gynecology appointment doctor. I can't afford urology, especially the fact that they didn't help
Hello Jill in your experience what is the worse when you get older can happen with IC diagnosis? I did Botox last year and it was last for eight months, now Ic came back. I start installation again, it does not help me. I don’t take any medication and I don’t like medication because it is a lot of side effects. Is any natural cure you can suggest. Please help🙏🏻
I was diagnosed with IC about 2 years ago and I'm still not finding any relief. I kind of think my IBS and Ehlers-Danlos Syndrome are affecting my bladder. I've had a very high SED rate for 6 years now. I'm not able to take any anti-imflammitories because of the heart issues I have that go with my EDS. I was on Elmeron for about 4 month but my doctor took me off of it because it wasn't helping me. I drink tons of water and I was already following the diet because it's relatively the same as the IBS diet. My urologist wants me to think about a bladder pacemaker but I have trouble healing because of my EDS. I still have open wounds that won't close from my appendix surgery 4 years ago. I really don't want it to come down to surgery and I don't know if I will even find relief from the surgery. I'm just sick of being sick!
I have EDs as well how are your Symptoms today?
I hate ic its hard holding on to a job hard gping out to be 21 cuz I feel like im so limited due to my diet. I was wondering does anybody else feel so much extreme,pain u feel like pushing?
Been dealing with this for about a year. Diagnosed with IC. Have had many flare ups but this week, 3 good days so far! Diet is huge. Drinking little sips of water vs the whole bottle will help per Jill's suggestion. I wish I new about Tylenol w/ codeine for pain. I could have used this relief many times. Urologist just gave me Elavil but this is an antideppresant. Any thoughts on this? I work on my feet 8 hours so you can imagine how hard it is on my pelvic muscles. Thanks.
I agree with what you said becauce I almost every other time found with blood in my urine and my doctor says its because of my ic.
@kessevil Wow, I really disagree with your doctor. Visible blood implies that a fairly large vessel has been opened such as what we would expect in a Hunner's Ulcer. It's so profound that in a hydrodistention it's called a "waterfall" effect The smaller glomerulations rarely produce enough blood to be visible in the toilet bowl. I don't know what else to say except that every doctor that I've worked with always advises patients with visible blood to seek medical attention immediately.
someone help me pls
@supervixen404 hi,apparently not.i have been having the same problem for nearly a year now.
Hi Jill. I just want to say that I appreciate so much what you are trying to do, which is to inform people about this awful chronic disease. I was wondering, with a flare up, (I just found out I have IC three days ago and have been on a very strict diet since then) can the flare up still last even though I am currently eating and drinking the right things for over 78 hours?
Thank you for bringing this up I am in the same very stupid diet and still have pain. Even installation is not helping me this is my second time within one a year, it’s still has flair. I’m very frustrated and I don’t know what to do anymore
@@flygirl0107 How are you now ? Are you better?
In your video, you say that blood in urine is not normal for IC patients. But I know that people with ulcers in the bladder can have blood. I had blood in my urine the first time I was diagnosed with IC so it was hard for doctors do diagnose me.
I have been suffering with bladder pain for 6 years. Sometime I have a UTI sometimes I dont. Yesterday I went to the ER they did an ultrasound of my reproductive organs. That was fine I had no UTI. I am having burning in my Vaginal Area. My bladder feels like someone is sticking pins in it. I get these flare ups every couple months. This one has been the longest going on two weeks now. Im going to a Urologist finally tomorrow to see. If I can get help.
What did the urologist say?
I've been suffering from bladder infections since I can remember. I have noticed two different pains each time I get one and EVERY doctor I've seen gives me the same antibiotics? Its even to a point that they don't even check my urine anymore, they just give me the meds....how do I ask a doctor to check for something like this? And how do I go about getting them to listen to me? I get one either every other month or sometimes twice in the same month with different pain :-(
Yours could be recurrent uti instead of IC, you can get a kit to test your urine for white blood cells, if that exist, you probably have bacteria and you can ask your doctor to do a lab culture to determine the presence of bacteria, you can ask your local pharmacy for the testing paper
Hi Jill..I am 25 year old female...i suffer from burning in urehtra and sometimes in bladder...it is like impulses that go from my bladder to the urehtra..it all began 3 years ago whren i had ecoli uti which was treated but the burning didnt went away...i have made all the exams possible they are negative to any bacteria,i have never had blood in urine nor high eritrocites in urine. I dont have urgency nor frequency. Do i have ic?
I read somewhere that sometimes even after illness or injury pain lingers on because the brain is hyper aware and is unable to down regulate the pain signal but I heard nerve blocks or a electrical device to stimulate nerves can help with that maybe look into that as a last resort.
I get a lot of gas and pressure when I get a flare. Is this common? I do have Klonopin and Zanaflex. You CANNOT get pain meds in PA unless I have cancer or am post major surgery or accident. Also, would lose my benzo and have to undergo dangerous rapid taper. Is having a yearly cystoscopy not a good idea? It seems to give me several months of excellent relief. The last one revealed "classic photos of severe IC." I must give up my coffee. I'm on a fodmaps diet for colonic inertia, so otherwise diet is low acid. I use Prelief and probiotics and glug water all day long. Azo-Standard has stopped working. Hot baths are nice, but only while I'm in them. Zanaflex helps a bit. I may try the cold.
Does prelife and probiotics helps?
@@flygirl0107 Don't know about prebiotic but Prelief is good. You MUST cut out coffer and tomatoes, though, sadly.
@@jeanmank6342 you won’t believe it I don’t Coffee at all only water one and a half liter a day. Sometimes I do fast for three days I don’t eat drink only water and it still hurts. One of the Urologist three years ago was torturing me he put me in the cranberry juice and I told him it does not help me he said you need to drink more I should sue the doctor.
I still don't think visible amounts of blood in the urine are rare. I've talked with many people with IC about this who can actually see the blood. And my urine has been red/pink with blood a few times in the past. I'm not sure how abusing ketamine has anything to do with it either, because you can have a lot of visible blood without abusing ketamine....
Just found out that the scalding burning pain I have in bladder is IC. had every test, negative. The urologist didn't mention the word IC just asked me questions about diet. She gave me estrace. I had incredible burning using that. I had to pour cold water over the urethra just to bear it. Only now learning about diet. Just today. Why are doctors so ignorant of this? I have had it since Thanksgiving 2015, going on 8 months. I have driven it away with probiotics. That doesn't seem to work. Anyone try D mannose with any success?
D mannose is only good if you have e coli in your bladder, that's an uti not IC
this is probably a waste of my time cause im sure no one will respond but here goes,im a man age 29 had this or atleast the symptoms of it for ten years and its only getting worse. the uroligist (all of them) told me it was the xanax which im not ruling out,but i got off the xanax using valium for 46 days and still had the prob and the uroligist gave me vesicare and told me to go back to the valium which is just like xanax,i was relieved for a month with vesicare a lil now its come back vengence
Acupuncture and herbs worked for me but it’s a long healing journey ☯️
why
A low oxalate diet is helping me.
What about MEN who have IC, like me?? =/ It's so tough to find resources because a small percentage of guys have this thing too, and it's absolutely life-ruining.
I don't really see any correlation. We really think of IC as more of an injury to the bladder.. where nerves get irritated so I suppose that if the masturbation was very harsh, painful and damaging, it might set a foundation for inflammation.. but that's just a guess. I've never seen any studies that support this.
A glass or two of water? It takes a lot more water than that per day. Even if you're not experiencing bladder problems or UTI's, water is essential to general health. And what about cranberry? This wan't even mentioned. SMH
Cranberry is counter productive to IC and should be avoided.Most likely due to its acidity.
@kessevil Yes it can but usually it's microscopic blood. Visible blood in the urine is much less frequent unless the patient has Hunner's Ulcers. Most doctors would agree that visible blood should always be reported to your doctor, especially if you are peeing clots or bright red blood.
@kessevil Yes it can but usually it's microscopic blood. Visible blood in the urine is much less frequent unless the patient has Hunner's Ulcers. Most doctors would agree that visible blood should always be reported to your doctor, especially if you are peeing clots or bright red blood.