Thank you for this video. I've taken notes of everything you said, This past year has near enough ruined my life. I've felt that I don't want live. Like you I'm not suicidal at all I am so blessed with life but to live like this reaches hopeless moments. I'm constantly taken into A&E (ER) they've had to sedate me because I've been screaming so much for hours on end. My relationship has suffered greatly due to it. I'm about to have a Cystoscopy and Biopsy to properly diagnose which is scary in itself as I hear such horror stories about these diagnosis surgeries and I don't even know what will follow them. I've had many periods where I've slept in the bathroom with a blanket as I'm in such agony. I'm in pain 24 hours a day, I haven't slept for 12 months. I wake up every 20 minutes or so to wee. When I go to the toilet the pain is worse than being in labour with my son. It's like being ripped and stabbed with glass. I've known a lot of pain and experiences in my life but this is the worst. I'm trying to be as positive as possible and say what I'm grateful for every night. But it's effected every once of my relationships, my family, my boyfriend and awfully how I am able to take care of my son. Now I'm being seriously judged as I was housebound for 11 months. I've recently started going out of the house but only very locally, I can't get on a bus or be in a car for long. I take an horrible amount of prescription painkillers day and night including Valium, Tramadol and Codine. I hate that my 5 year old who I raise alone has to see me in such severe pain every day. I'm so desperate you guys. I refuse to give in to this. I will get better but oh my god it's awful. It's so awful. Sorry if this post has upset anyone, I rarely talk about this. It's a nightmare. I won't give up. I send love to all of you, we WILL get through this and be rewarded by the universe in beautiful ways. Love to all LollyBon xox #England
dear lady my heart goes out to you i hope your situation has got better? i dont suffer nothing like you but i get terrible sickness and am stuck on a chair with a bowl underneath just peeing it happens every few weeks i dont know whats causing it im menapauseal dry other bits dont help/ my realationship has sufferd badly cant do much but feel sick and awfull/im chaanging my diet cutting out alot of what i think is causing this its the not knowing and people who just dont understand how truely horrid you feel for days on end sorry about spellings god bless you and your son many women are suffering from all this painfull branches of this tree xx
How hard is this .! I’m going insane . 16 years for me .l also get up every 20 min at night . My mental Heath is just hanging on . Nobody understands and to read your story blew my mind because everything you say is me 😔.. lm a single mum also ,my son is 25 now . I’ve taken all sorts of stuff to get sleep but the pain wakes me up every time! Most days l feel like lm loosing my mind .l soldier on somehow.
After living with IC for more than 30 years, I was delighted to find thes videos. I am currently in a major flare up after ankle-replacement surgery and getting rescue treatments. Thank you for all you do, Jill. You know that your help is life-giving and hope to many of us!
Thank you so much for all you do. Thanks to the Internet so much suffering can be avoided. I almost feel blessed in the misery - cause very rapidly I was able to understand what it might be and take actions at once. 20 years ago I wouldn't even have known that I should stop coffee so I'm grateful I can learn on sb else's experience even though I'm devastated that so many people are in so much pain. I don't have pain but I'm so afraid of it. Thank you again and be well . I will watch and read all there is and when I'm healed, I believe I will, I will do my best to help others as well.
The very fact you cite Cyclosporine is an indication of an IC/autoimmune connection, something I discovered in the course of doing a lot of research on the Net. In my case, I had stopped taking another immunosuppressive med, Imuran, which I've used for Crohn's Disease and shortly after stopping my intake, I got the IC. Of course, IC wasn't the first thing considered; I've also had UTI's likely due to an enlarged prostate but a urinalysis along with a CT scan and finally cystoscopy suggested to my urologist that IC was the most likely culprit(esp. because of chronic pain and excess urination). So Imuran CAN work but it isn't as fast acting as I imagine Cyclosporine to be, usually requiring a 2-3 month time period to take effect.
Good, but you didn't cover pain management. Also you didn't warn patients that bladder instillation can cause damage to the urethra and make pain even worse. You also didn't cover that many people who suffer from chronic pain typically have extremely low levels of vitamin D. The reason many people don't go to level 4 or 5 is because they are not solutions to the problem and cause further problems. Also cover the long term effects IC causes such as lack of sleep which in turn can cause heart problems, weight gain, etc etc.
The video was already 25 minutes long. Further, it seemed to me the doctor was very good about wanting people to try less invasive, less risky treatments first. I don't think it's fair to demand that a person act like a robotic encyclopedia when she's obviously thought through a massive quantity of data and presented a solid, comprehensible narrative.
I have to disagree with the pelvic floor physical therapy. My Dr wanted to try and massage my pelvic floor muscles to see if that would help. Let me tell you. I had a charley horse in my vagina for over an hour and very very painful. I would suffer with the pelvic floor pain first!!
I just saw a commercial on TV for Cancer Centers of America. A woman with bladder cancer had her bladder removed and the surgeon took part of her intestine and created a new bladder for her and she is now doing fine. Got me thinking. I have had IC for about 15 years and reacted to Elmiron, have had bladder instillations of DMSO with severe post pain. altered my diet, tried to manage stress, which always causes a flare.My urethra is severly damjaged due to many cathiters through the years. Currently trying Aloe Vera. Now I have been on narcotic pain medications every day to manage, and that seems to be the only thing that makes the quality of my life like other normal people. I wish they could just find a cure!!!!!!
Interesting that nothing was said about a significantly difficult side effect of Amitryptiline - it causes urine retention and difficulty urinating. I would love to use it, since anxiety, for me, creates body tension, which interferes with urine voiding in a significant, painful way. But how can I use this drug when it seriously affects bladder function in this manner? So many drugs cause difficulty with urinating, especially muscle relaxants and pain killers. So I am left to manage the horrible pain and malfunctioning bladder anxiety day by day, hour by hour without any helpful drugs.
Thank God I found your channel! First I want to thank you for everything! From the botyom of my heart! I have Severe case of IC for 5yrs. Hunners ulcers, bladder spasm, OAB, in diappers 24/7 because - voiding more than 100x day :( Also have IBS with big impact on my bladder, almost like nerves are so connected that pain travels... Trying to do Candida diet myself but its hard because with all my health issues there are just a few things I can eat and feel I have nutrient deficiency. Taking Aloe Desert Harvest for 3yrs now....should I stop for a while or is it safe to take it for years? I was takinh Hydroxizine Hcl for 3yrs thought it helped, but than decided to stop, (dry eyes I could bearly have it open)and also have arrhythmias so dr said its nit good for prolonged usage especially for heart.... Thank you so much for everything, you gave me BIG HOPE!!! ❤️❤️❤️❤️🙏🏻🙏🏻🙏🏻🙏🏻 I wish you all to find the cure, lots of love!
I think most people could probably use it but maybe have blood tests I used very small amounts and after I stopped blood was normal so just worth keeping a eye on. Some people use huge amounts I have read on the mb
The last 10-12 years of my life have been controlled by IC. The pain at times is so severe, I just want to put a gun to my head and end it. It affects all parts of my life, from my marriage to socialising with friends and family. I have tried so many different medications and none seem to work. I've tried changing my diets with very little difference. I would love to hear from anyone who's managed to control their IC as I'm willing to try anything. I've been taking Elmiron for the past couple of years, plus strong painkillers but over the past few weeks, the symptoms have got worse. I've seen different urologists and they all seem a little lost as to what's the best course to take. I'm a man and to me, it's the worst pain I've ever experienced when it's at it peak. I would love any advice as I'd rather not go down the route of choosing the ultimate cure!! Thank you.
Hi what works for me is .625 MG of Premarin. The bladder needs hormones to function properly after menopause. I am morally against the production of Premarin but I was desperate.
Hello Jill. Excellent video. I have been taking Hiprex for almost two years for reoccurring UTIs which I've had all my adult life. Hiprex makes the urine acidic so bacteria can't live there. But could that also be causing a bladder irritation? I also just had an IUD removed which I'm sure caused an irritation to my bladder as well.
Any chance you cover Lyme as a cause of this? Lyme has all these symptoms and spirochete storms. It’s ruined my teeth and they are falling out and dying! I loved my teeth, and now these stupid parasites and bacterias have invaded my body, and everything has been affected. I also had breast implants which made me so sick from toxins that I had to have 4 major surgeries within 10 months, and died on the table. I also contracted pseudomonas aeriginosa which I am convinced made my legs have nerve pain and my bladder go nuts!!
What’s a good supplement I can take I’ve read that taking an antihistamine like Zyrtec or aloe supplements really help? I would prefer to keep the cost as low as possible
hey,i have ic and when i go to gyneco and do the test they found mycoplasma and ureaplsma and candida...so i m 100% sure that mycoplasma ureaplasma and candida are connect to ic
What's that?? I went on antibiotics like 3 weeks ago and still have symptoms. The issue it seems is that no Dr knows anything about it and even my results are confusing. For example, my uro didn't know what ureaplasma or Mycoplasma was but found it in the system. Then another Dr called to tell me I had an infection. But when I got retested the results were blurred and the other uro in the office told me she didn't think ureaplasma was a thing. It's all so confusing
I have bladder discomfort that comes and goes..seems to be related to stress...also had no problem until ended menopause...coukd i have ic..no urgency.
Thanks for this, is decaffinated coffee okay? and I had acupuncture, which involved a needle in my ankle, and it was attatched to a small machine ,which was charged up, must say it worked while I was having it, but once the course stopped it came back. I am interested in why the pelvic muscles can be too tight?? I thought the idea was to make them tight??
I waited through all this to see if you addressed the actual issue with IC- if you only address bladder and pelvis you are not addressing IC in full because it comes with a syndrome of fibromyalgia, migraines, chronic fatigue, nocturia, etc.. In Canada it is recognized as a symptom of Lyme disease- no frankenstein treatments of the bladder and pelvis address the whole body issue that is IC
You are referring to IC subtype 5 in the Payne subtyping system… aka chronic overlapping pain conditions which has changed dramatically since I filmed his video. Discussed in depth in our live support group meetings and I do hope to make more videos on this too.
@@icnjill Giving subtypes was not mentioned back when I was diagnosed and most in the support group had the whole body issues, and diagnosis with cystoscopy. Now, I go into online support groups with people who have never had a cystoscopy that say they were diagnosed with IC- very confusing.
Stay away from Mayonnaise it has raw egg in it and it will ruin your day, count your water intake, have you tried Elmiron it takes a month to work but it helps me, stay away from cinnamon, nutmeg and allspice
i am consider i don't drink coffie or pop or anyother acids its been 13 years i have tried every thing i am on elmiron i have seen three bladder doctors in past three years. i did pt i am going to see my forth doctor.
Is it possible to have all the symptoms of IC that I had 11 years ago and have it return after 11 years that last about 6mo? I have had pelvic floor exams ultra sounds done on bladder & how it empty’s etc..My MD believe it is IC where urologist feels further testing would have to be done before he could say that is what I had. No medication was ever given except Prelief over the counter which did help…no matter what diet I was on did not help seemed to have to run it’s course thank God I have been pain free for several months ...But the last time i had this was 11 years ago have you ever heard of someone that had it like this? Thanks
You should watch our last video on the subtypes of IC. Basically, we no longer think of IC as a bladder disease... but more of a pelvic pain syndrome or injury. Why? Because it's clear that more than the bladder is involved in MANY patients... such as the pelvic floor muscles, bowel, nerves, etc. So... I think it's very helpful to think of it as an injury and, yes, your bladder OR muscles can be injured again. The fact that Prelief helped suggests that your bladder wall had been injured/compromised in some way and that it has healed well. But, like many of us, it can be hurt again. Remember too that as we get older, our bladder loses some of its ability to protect itself.. thus becomes more vulnerable to certain strong foods like coffees and green teas.
Kimberleigh Munn Try D-manose . I can’t cope with muscle relaxers or amitrypthiline ,I get irregular heart beats and feel like I’m getting heart attack .. natural remedies works sometimes followed with pelvic floor exercises
I am on D-mannose. You can buy them on Amazon in tablet and powder form. They have helped so much! You can take up to 6 per day and is derived from plants. I take one per day plus any others when I have a flare up. My support group recommended then to me a few years ago and I have them on subscription! (I’m in Scotland). Hope this helps!
Sophie Wright I’m also from Scotland Attending Ayr Hospital Under Mr Meddings having a really bad time of it with my IC , I’m trying D-Manose and Prelief Marshmallow root Hospital doing instillation (Cystistat but sorry to say I’m still suffering
@@margaretmeechan9490 Margaret how have you been doing, Have you tried Elmiron, It takes a month to get some relief, the bladder installation didn't do anything for me. Stay away from Mayonnaise it has raw egg in it and it will ruin your day, no cinnamon, nutmeg, or allspice But we can pee in the ocean all we want and get our exercise.. Be strong, April 9 will be my 17th year with IC and boy have I seen the quacks come and go. Peace and God bless.
how do you eliminate the risk of hairfall while taking Elmiron ? Is there any supplements to help reduce the risk of hair fall that are bladder friendly?
Bridget be careful of to much calcium or you will get kidney stones like me 17 years of IC talking. : ) well at least we can pee as we swim in the ocean and get exercise. Peace And remember YOU are not alone we are a Family.
I have a question that nobody has brought up. I began using Pyridium (Azo-Standard OTC) for bladder pain during an UTI as it stopped the spasming and pain associated with that. So when the tests began to come back showing no infection and I realized my IC had come back. For me a natural reaction to being catheterized during a life-threatening illness, but any catheterization created further damage on my severely scarred urethra, thus my IC, which had been in remission for 30 years, flared up and has been back intermittently for about 6 months. Anyway, because catheters, no matter the cause, always seem to do further damage, I mostly avoid treatment and/or further testing if it requires catheters. So I've been continuing to use Pyridium for pain and spasms--it doesn't help urgency or frequency for me, but those I've gotten used to--without any other treatment, or even a firm diagnosis. Is this dangerous? My PCP says it's safe, and didn't dispute my refusal to referral to a urologist. He knows that I know my own body quite well, thank you very much, and when I decide a treatment or referral is not in my best interests, there's little he can say that will affect my decision. All I want to know is if taking Pyridium about 3-4 days per week, once or twice per day, indefinitely, is dangerous? BTW, my injury was caused during a childhood catheterization by an idiot who somehow managed not to officially flunk out of medical school looking for stones, which I had. This was so many years ago that catheters were metal, and he injured my urethra first with the metal catheter, and second, forcing me to pass the stones naturally, and then when they got stuck, using a metal catheter, AGAIN, to force them out. All this with no pain medication, of course, since children "don't feel pain," or so my mother was told, despite my screaming hysterically. I am going to try the OTC meds, though. Where can I get Prelief? I've never heard of it. Thanks!
Sherry, most pharmacies carry Prelief. I tried every prescription, all the bladder installations, diet change ect. I found prelief and cystex to work great, better than any prescription that I took. Pyridium is NOT good for your bladder if taken more than 2-3 days. Most physicians will tell you that and it says it right on the bottle. I get pelvic floor pain, bladder pain, frequency and urgency EVERYDAY and I don't get more than 2 hours of sleep at a time ( i'm up 4-5 times a night to go to the bathroom) I have noticed I have been eating cinnamon buns for the past couple of weeks and I think the cinnamon in the buns is making my symptoms much better!! Bananas help calm the bladder down also!! Good luck!!
You can order prelief on Amazon, or purchase it at Walgreen. I use cystoprotek for my urethra IC and it help alots.Also be care full taking prelief if you a prone to a kidney stone. They a supplement that helps with stone it's call stone braker. you can purchase it at Amazon.
I am going through something the hospital says is typical UTI. Doesn't seem much like it. Usually on the very rare occasions i have had it, it goes away in 24/48 with really minimal discomfort and no trips to the Dr. This started with antibiotics for bronchitis! It's alarming, none of the UTC antibiotics seem to work in fact, I am worse now than when I started taking them. This is all very confusing. I have been led to believe that lemon juice is good, ACV is excellent, vit. C likewise. Don't seem to be able to buy unsweetened cranberry juice, so i avoid that. I take Bicarbonate of soda. I absolutely avoid sugar, but sounds like you are using it to sweeten drinks. Is there any way out of this nightmare? Its SO debilitating.
Gill, what do you think of taking Nitrofurantoin 50mg (bladder specific antibiotic) for life? I have had IC with Hunner lesions for 21y. It has really helped for pain and F&U in the last year (I was bed ridden), but I nervous about taking it forever. Thank you.
Louise, I took Nitrofuratoin for my I.C. too and yes it does help. I was also told it's not something you should take long term however, I know us I.C. sufferers would do about anything just for a little relief!!
My bladder got i jured in a head on wreck. 2006, Its huge. And it feels like my insides are falling out The urlogest said i need to pee more. Ive been suffering greatly
I have IC, i have changed my diet and tried including alkaline to my diet and I still suffer from uncomfortable symptoms, they aren’t as bad as they are when I don’t eat certain foods, for someone with IC who doesn’t want to live the rest of their life with painful symptoms removing your bladder should NOT be something that is not an option unless you have destroyed your body with these barbaric treatments like distillation
Hi Jill, I've been having manageable symptoms with lifestyle and diet controls and physical therapy for about 5 yrs. A routine urine test lay week showed blood so my urologist, who appears to have a wonderful reputation here in the UK has said I need a cystoscopy and hydrodistention, and then likely treatments by catheter. I'm terrified that the cytoscopy will make things worse and irritate things much more than they already are. I'm also concerned by urethra damage by catheters. Is there an alternative to the cystoscopy with hydro? Should I opt just for cystoscopy simply for diagnosis? From what I have read is not as effective as diagnosing? However I'm very much against the hydrodistention. Thank you Jill, you're very knowledgeable and helpful. Melissa
Melissa Higgins hi there. I have had both treatments. I was awake for my first cystoscopy and asleep when they did it a second time along with the hydrodistention as well as stretching my urethra. Although I did get some discomfort after each procedure due to the catheter being inserted, it didn’t make things better or worse long term. You must remember, they are professionals and know what they’re doing. They know how to insert catheters correctly and know how much the bladder can take. You will be in safe hands. I agree to everything they offer because if I don’t, they can use it against me later on when something else doesn’t work; “oh well you refused to try this so we’ll never know...” I personally would recommend doing both. You’re already there on the table (so to speak) and it saves you from potentially having to go through it again if they don’t come up with an answer - I’ve also been in that position. I had to go through it more than once due to incompetence of my first urologist. Stretching of the bladder helps with retention of urine and helps with frequency and many other things (or so I was told). Although it didn’t help me, apparently it has helped others. It didn’t make things worse for me and at least I tried it so it’s there in my notes should the idea of the procedure ever come up again. Regarding the blood in your urine, that indicates an infection. Perhaps you should be put on long term antibiotics? Your urologist knows better and if going through it gives you an answer (and potentially some relief with symptoms) then why not? I highly doubt it would make things worse in the long run, you may get an infection from the catheter which happens a lot with me, but you may get a diagnosis and closer to the correct treatment you need. (Ps. I live in Scotland) Hope this helps x
@@kellie4225 Sorry to meddle, just found 2 natural remedies that have helped me I would say 40% and they are Turmeric and Neem in an empty stomach. Best of luck
hi, I am not dignosed with IC yet, but i have all the symptoms . I am very affraid of Elmiron and being an algerian woman , i can nor get it here , nor afford it online :( .I have a question: are supplements really prposed as a therapy by the AUA. I cannot find it on their internet page and it worries me a bit. would you mind posting a link i to their recommandations , please?
I had breast cancer 5 years ago which was hormone receptor positive. I will finish the 5 year prescribed Arimidex medication at the end of September. The Arimidex blocks the estrogen production in my adrenal glands so therefore I have not had the hormone for the past 5 years. This has caused a significant problem with my IC which presently is in a major flare. My urologist wants me to use estrace cream NOW to help my IC. My oncologist says NO, NOT NOW OR AFTER I finish the Arimidex in September. I really don't know which way to go. Presently I am fighting an E coli UTI and going for 5 days to an infusion center for Rocephin IV's. A nurse I spoke with there said my body will produce very little estrogen once I'm off the Arimidex because of my age. So what hope is there for me at this crossroads?
diluted Cranberry juice helps for me including avoiding triggers like coffee, tea, chocolate, tomatoes....also avoid sugar and simple carbs like white flour.
Not directly though I do know that many patients have used MMJ very successfully and that IC is listed as one of the conditions that MMJ can be used for in a couple of states where it is legal.
If you use prelief often it can give you kidney stones.I solved this problem with stone breaker supplement and baking soda. I Also, drink lots of clean water. I use zero water. I drink fresh organic juice made with beets, carrots, gala apple, kale, swisschard, and celery. Since baking soda can affect your blood pressure. That the reason why I drink juice and do coffee enema it keeps my BP.low. I have been using cystoprotek for 10 years, and it did help me a great deal. Also be careful with nightshade veg. Yoga excersive especially the one that concentrates on working you're pelvic also help greatly.
not discrediting all the valuable studies and research into ic but i cured my own ic and medical treatments did not work only temporarily improved symptoms. i believe ic is caused by a fungus/yeast/bacteria that has escaped from somewhere else in your body and has housed itself in your bladder due to a low immune system causing the bladder to be irritated and excessive urination as your body wants that stuff out of there but is too weak to fix itself. i cured my ic by taking strong probiotic supplements (2-3 times recommended dosages) for 12 months and following ketogenic diet (no grains) i ate avocado tomatoes banana because our body needs those things! the ic diet made me sicker because of all the excluded foods. probiotic pills made me flare for about a week after starting them as guess what your immune system is finally getting back missing or low bacteria so its fighting like crazy to get that gunk out of your bladder. after a few weeks i then doubled the dose same thing flares for a week but then felt better then tripled. i was on 90+ cfu per day. i followed ketogenic diet (no grains or starches) to allow my immune system to focus on fixing my bladder and not being bogged down all day on my digestion. it takes time give yourself 1 full year. you do not have to live with ic or accept it as a life sentence you can drink coffee again you can enjoy alcohol again. do not let it ruin your life. i am not a doctor at all but i insist please please please stick with probiotic supplements even if you flare initially for a week or more. each time the flare passes you will feel better and better and get terrific sleep and great sex again 😉 peace out. ps i am not a doctor just an individual who has cured my own ic from lots of my own research.
Graham Langley , Hi please can you list which Strains of bacteria where in your probiotic capsules? So many over the counter- probiotics, but the strains vary . Thanks :)
Jill, I have gone through every step available. I'm at the point of pain stim, or pain pump. My doctor rejected my cystectomy request. What do patients like me do when a doctor rejects your request? I'm in CA, do you know of any surgeons who do not dismiss IC patients?
+Jill Osborne thank you, I really appreciate it. I have my own TH-cam on IC so I've been sharing this with everyone. It's been quite a battle. I'm going to call you!
Hey MissM. My mom dislocated her hip when you called, hence the urgent yells in the background. She's still in the hospital but we hope to bring her home either tonight or tomorrow. Thank you for understanding! Hopefully I'll be here tomorrow!
Omgosh, it is absolutely heartbreaking to see so much pain in these comments. Please be strong! There is reason to believe that help is on the way... there are still clinical treatments being investigated... not to mention the incorporation of AI in the pharm. agency will speed up the devolopement of medication for chronic illness like this one as well. Additionally, companies like Axonics offer sacral stimulating implants that numb bladder pain and urgency
My wife has been diagnosed with IC at the age of 26. Her doctor now wants her to take a medication that could cause her to lose her hair along with applying a catheter every day for the rest of her life. What can she do?
Jeremy English elmiron might be helpful to stop the pain after 6 months of use. There are natural treatments like marshmallow root and msm suppliments. Please ask if you have questions.
The best book for treating IC is by Diana Brady. The book is called IC NATURALLY. She has helped thousands of women and men worldwide with her natural approach to treating IC. Diana was named WOMAN OF THE YEAR for 2013 and 2014 by The National Association of Woman for her work in treating IC. Her book is available at Amazon Books.
Andrew, lots and lots of water or you'll get kidney stones like me. Did you try Elmiron yet, it took me a month to fill some relief. Peace and God bless.
@@brot5246 Tried Elmiron for a short period, found best results with diet and lots of water. I also take Hydroxizine and Cardura. Elmiron was pulled i believe.. www.levinlaw.com/elmiron-lawsuit Elmiron Lawsuits - Pigmentary Maculopathy The Elmiron lawsuit claims that long-term exposure to Elmiron causes maculopathy, an eye disorder affecting the macula (central part of the retina) and a major cause of blindness. Our law firm is representing individuals who took Elmiron and have suffered maculopathy or other serious eye damage.
she is an MD, right... 10 different chemical pills , nobody knows how they all interact with each other, side effects that might be worse than the pain
that's not clear, cause apparently lemon becomes alkaline in the stomach, but just in case, stop it for 3-6 months. No lemons, oranges, pineapples or vit C.
No Mayonnaise either because it has raw egg in it and it will ruin your day, no cinnamon, no nutmeg, no allspice, Don't you hate stopping a movie to go pee (every time) Or waking up to go pee... Or never ride a roller coaster ... But we can pee in the ocean whenever we like... God bless.
Martha Quintana yo tengo está enfermera y no ay cura tienes que haces dieta no beber nada asido no chile picante no tomate no soda es malo cafeina no café estoy viendo especialista y me recetó trospium colorida 25mg y la otra es elmiron 100mg pero el dolor nunca se a mi doctor familiar me recetó para el dolor gabapentin está es para la ansiedad porque está enfermera está conectada com el cerebro necesita estar relajada tranquila también me mandaron a físico terapia ejersicio para la pelvis y vagina me an puesto tratamiento adentro de la vejiga que le día en resquio pero no miro ningun alivio un día después que tengo sexo es un dolor desesperado por 3 día también te puedes poner almuada eletrica de a los en las parte de abdomen o bejiga te bien estuve en tratamiento por 6 meses para prevenir infecciones de riñones que estaba teniendo cada mes yo me siento que no tengo vida normal com está enfermedad es horrible
Martha Quintana sabes la señora está hablando que ella padese de esta enfermedad y dice de las dietas tan bien dice de físico terapia los tratamiento que ay en los Estados Unidos ay muchísimas personas com está enfermedad
I hear everything you’re saying, but who the heck can afford all that? Who can afford to go to a urologist for goodness sake? That’s why hospitals cost so much. Because most people just end up having to go to the ER because they can’t afford to go to a doctor or specialist. And then end up with tens of thousands of dollars in debt for each visit to the ER.
Eliminating all salt from my diet is the closest thing to a complete cure I have come across. That means for the most part you have to carefully prepare all your own meals. I also quit eating meat, poultry and diary products. Salt is your enemy even when it occurs naturally in food. I am now not taking any type of medication for IC. I don't need it.
stephanie renee I have IC and when they use lidocaine in my bladder I have a sensitivity to it so I know Botox will probably cause me severe retention - so what positive effects did you have after getting Botox ? I was going to look into it
@@kellie4225 no ma’am nothing has helped and my urologist has said Botox will leave me unable to urinate on my own more than likely and I was told Botox doesn’t take the pain away - has it helped you ?
@@Tinyteacher1111 I receive hundreds of questions a day so it’s impossible to answer all the ones on social media. We don’t use DMSO much anymore now that we are phenotyping. This video is 8 years old and we’ve had new phenotypes and guidelines released. Check out our Master Class videos… specifically the one on bladder instills.
@ I know. I get it. I was just making an observation. Thanks for responding! I will check that out! Much appreciated! I’m going nuts with this and dehydration from going to the bathroom so much! I wonder if it’s the Lyme I have or the pseudomonas aeriginosa from a surgery 6 years ago. Could be my spine. It horrible, and I’m only 4’9” and 98 lbs. I have AS and MANY more diagnosed issues, so something happened along the 21 year journey! Thanks!!?🙏
It sounds like this whole video is a test practice on women. Not a cure. They all seem risky and not helpful at all. Don't really know any helpful suggestions. By the time you get through your steps, the patient has been in pain for years.
Years ago you use to promote the natural approach to treating IC like in Diana Brady‘s book IC Naturally. Now you are promoting drugs and evasive treatments for people. The only step that is worth trying is step one. The rest of the steps are expensive and evasive and you should be ashamed of yourself. Seeing a PT might be good but massage therapy would be beneficial also with a properly trained therapist.
Thank you for this video. I've taken notes of everything you said,
This past year has near enough ruined my life. I've felt that I don't want live. Like you I'm not suicidal at all I am so blessed with life but to live like this reaches hopeless moments.
I'm constantly taken into A&E (ER) they've had to sedate me because I've been screaming so much for hours on end.
My relationship has suffered greatly due to it.
I'm about to have a Cystoscopy and Biopsy to properly diagnose which is scary in itself as I hear such horror stories about these diagnosis surgeries and I don't even know what will follow them.
I've had many periods where I've slept in the bathroom with a blanket as I'm in such agony.
I'm in pain 24 hours a day, I haven't slept for 12 months. I wake up every 20 minutes or so to wee. When I go to the toilet the pain is worse than being in labour with my son. It's like being ripped and stabbed with glass.
I've known a lot of pain and experiences in my life but this is the worst.
I'm trying to be as positive as possible and say what I'm grateful for every night. But it's effected every once of my relationships, my family, my boyfriend and awfully how I am able to take care of my son. Now I'm being seriously judged as I was housebound for 11 months. I've recently started going out of the house but only very locally, I can't get on a bus or be in a car for long.
I take an horrible amount of prescription painkillers day and night including Valium, Tramadol and Codine. I hate that my 5 year old who I raise alone has to see me in such severe pain every day.
I'm so desperate you guys. I refuse to give in to this. I will get better but oh my god it's awful. It's so awful.
Sorry if this post has upset anyone, I rarely talk about this. It's a nightmare. I won't give up.
I send love to all of you, we WILL get through this and be rewarded by the universe in beautiful ways. Love to all
LollyBon xox #England
Lolita Bonita thanks for much for speaking out. How was pregnancy with this condition ?
Please, don't you let yourself suffer so much for so long..I hope you got better and this could only happen following the steps Jill mentioned.
I really love you. This pain I know seems like never going to end. Depression, embarassment everything is there. I wish this pain ends.
dear lady my heart goes out to you i hope your situation has got better? i dont suffer nothing like you but i get terrible sickness and am stuck on a chair with a bowl underneath just peeing it happens every few weeks i dont know whats causing it im menapauseal dry other bits dont help/ my realationship has sufferd badly cant do much but feel sick and awfull/im chaanging my diet cutting out alot of what i think is causing this its the not knowing and people who just dont understand how truely horrid you feel for days on end sorry about spellings god bless you and your son many women are suffering from all this painfull branches of this tree xx
How hard is this .! I’m going insane . 16 years for me .l also get up every 20 min at night . My mental Heath is just hanging on . Nobody understands and to read your story blew my mind because everything you say is me 😔.. lm a single mum also ,my son is 25 now . I’ve taken all sorts of stuff to get sleep but the pain wakes me up every time! Most days l feel like lm loosing my mind .l soldier on somehow.
After living with IC for more than 30 years, I was delighted to find thes videos. I am currently in a major flare up after ankle-replacement surgery and getting rescue treatments. Thank you for all you do, Jill. You know that your help is life-giving and hope to many of us!
Thank you so much for all you do. Thanks to the Internet so much suffering can be avoided. I almost feel blessed in the misery - cause very rapidly I was able to understand what it might be and take actions at once. 20 years ago I wouldn't even have known that I should stop coffee so I'm grateful I can learn on sb else's experience even though I'm devastated that so many people are in so much pain. I don't have pain but I'm so afraid of it. Thank you again and be well . I will watch and read all there is and when I'm healed, I believe I will, I will do my best to help others as well.
Awesome video! So glad I found this video. I'm dealing with a horrible pain flare up. Thank you so much. 😊👍
Thank you Jill for giving us such great info. I thank you as always for your tireless work on our behalf.
The very fact you cite Cyclosporine is an indication of an IC/autoimmune connection, something I discovered in the course of doing a lot of research on the Net. In my case, I had stopped taking another immunosuppressive med, Imuran, which I've used for Crohn's Disease and shortly after stopping my intake, I got the IC. Of course, IC wasn't the first thing considered; I've also had UTI's likely due to an enlarged prostate but a urinalysis along with a CT scan and finally cystoscopy suggested to my urologist that IC was the most likely culprit(esp. because of chronic pain and excess urination). So Imuran CAN work but it isn't as fast acting as I imagine Cyclosporine to be, usually requiring a 2-3 month time period to take effect.
I had a cystoscopy done for IC pain and when I woke up I was in HORRIBLE pain. I was crying in the recovery room.
Great info Jill. So glad you put this on your youtube channel. Thanks for all you do sweet lady!! 😊
U r the most amazing doctor I've watched thank u you have told me step by step god bless you
Good, but you didn't cover pain management. Also you didn't warn patients that bladder instillation can cause damage to the urethra and make pain even worse. You also didn't cover that many people who suffer from chronic pain typically have extremely low levels of vitamin D. The reason many people don't go to level 4 or 5 is because they are not solutions to the problem and cause further problems. Also cover the long term effects IC causes such as lack of sleep which in turn can cause heart problems, weight gain, etc etc.
The video was already 25 minutes long. Further, it seemed to me the doctor was very good about wanting people to try less invasive, less risky treatments first. I don't think it's fair to demand that a person act like a robotic encyclopedia when she's obviously thought through a massive quantity of data and presented a solid, comprehensible narrative.
shelby amberton Do you have I see and have you ever been in any of those treatments that they to harm that you know?
Do you have I c And tried all those treatments and didn't work?
Do you tried all those treatments and didn't work for you?
And, you don’t get a good night’s sleep if you have pain and have sit on the pot 50 times!
Just wonderful and so informative. Thank you so much for all you do to help us!
You are so welcome! Our guidelines were updated again since I filmed this video... Come check it out on our website - icnetwork.org
I have to disagree with the pelvic floor physical therapy. My Dr wanted to try and massage my pelvic floor muscles to see if that would help. Let me tell you. I had a charley horse in my vagina for over an hour and very very painful. I would suffer with the pelvic floor pain first!!
I just saw a commercial on TV for Cancer Centers of America. A woman with bladder cancer had her bladder removed and the surgeon took part of her intestine and created a new bladder for her and she is now doing fine. Got me thinking. I have had IC for about 15 years and reacted to Elmiron, have had bladder instillations of DMSO with severe post pain. altered my diet, tried to manage stress, which always causes a flare.My urethra is severly damjaged due to many cathiters through the years. Currently trying Aloe Vera. Now I have been on narcotic pain medications every day to manage, and that seems to be the only thing that makes the quality of my life like other normal people. I wish they could just find a cure!!!!!!
Interesting that nothing was said about a significantly difficult side effect of Amitryptiline - it causes urine retention and difficulty urinating. I would love to use it, since anxiety, for me, creates body tension, which interferes with urine voiding in a significant, painful way. But how can I use this drug when it seriously affects bladder function in this manner? So many drugs cause difficulty with urinating, especially muscle relaxants and pain killers. So I am left to manage the horrible pain and malfunctioning bladder anxiety day by day, hour by hour without any helpful drugs.
Nortriptyline has worked well for me. It has side effects but for me they were manageable. It took so much of the discomfort away.
How long til u felt better? I started amytryptiline 6 days ago
Thank you for all the good advise. Can I use my Tens Unit on my pelvic area to help stimulate the nerves?
Thank God I found your channel! First I want to thank you for everything! From the botyom of my heart! I have Severe case of IC for 5yrs. Hunners ulcers, bladder spasm, OAB, in diappers 24/7 because - voiding more than 100x day :( Also have IBS with big impact on my bladder, almost like nerves are so connected that pain travels... Trying to do Candida diet myself but its hard because with all my health issues there are just a few things I can eat and feel I have nutrient deficiency. Taking Aloe Desert Harvest for 3yrs now....should I stop for a while or is it safe to take it for years? I was takinh Hydroxizine Hcl for 3yrs thought it helped, but than decided to stop, (dry eyes I could bearly have it open)and also have arrhythmias so dr said its nit good for prolonged usage especially for heart.... Thank you so much for everything, you gave me BIG HOPE!!! ❤️❤️❤️❤️🙏🏻🙏🏻🙏🏻🙏🏻 I wish you all to find the cure, lots of love!
Hope you are doing fine! Did desert harvest aloe Vera supplement help you to make pain go away? Thanks
I think most people could probably use it but maybe have blood tests I used very small amounts and after I stopped blood was normal so just worth keeping a eye on. Some people use huge amounts I have read on the mb
After dealing with this for 3 years I finally had my bladder removed best decision I ever made
Oh my
How is the recovery after the surgery how the surgery affects your life now?
I had my bladder and my heart removed. Best decision I ever made.
The last 10-12 years of my life have been controlled by IC. The pain at times is so severe, I just want to put a gun to my head and end it. It affects all parts of my life, from my marriage to socialising with friends and family. I have tried so many different medications and none seem to work. I've tried changing my diets with very little difference.
I would love to hear from anyone who's managed to control their IC as I'm willing to try anything. I've been taking Elmiron for the past couple of years, plus strong painkillers but over the past few weeks, the symptoms have got worse. I've seen different urologists and they all seem a little lost as to what's the best course to take. I'm a man and to me, it's the worst pain I've ever experienced when it's at it peak.
I would love any advice as I'd rather not go down the route of choosing the ultimate cure!! Thank you.
Hi what works for me is .625 MG of Premarin. The bladder needs hormones to function properly after menopause. I am morally against the production of Premarin but I was desperate.
@@winterhorse Being a male, I don't suffer with the menopause so how would Premarin work for me!! Thanks for your concern though.
@@mgkiwi1958 didn't read your comment fully sorry I still believe the urinary tract needs hormone balance for male or female
Have you been informed on the effects of Elmiron on your eyes?
@@avi8504 NO, what are the effects? I've been taking Elmiron for the past 3/4 years and don't seem to have experienced anything abnormal with my eyes.
I’ve had ic for 4 years. A low salycilate diet is a must for me. Curcumin is helpful too.
Thank you. I think you just saved my life. Thank you for caring.
Hello Jill. Excellent video. I have been taking Hiprex for almost two years for reoccurring UTIs which I've had all my adult life. Hiprex makes the urine acidic so bacteria can't live there. But could that also be causing a bladder irritation? I also just had an IUD removed which I'm sure caused an irritation to my bladder as well.
Great information thank you Jill!
Any chance you cover Lyme as a cause of this? Lyme has all these symptoms and spirochete storms. It’s ruined my teeth and they are falling out and dying! I loved my teeth, and now these stupid parasites and bacterias have invaded my body, and everything has been affected.
I also had breast implants which made me so sick from toxins that I had to have 4 major surgeries within 10 months, and died on the table.
I also contracted pseudomonas aeriginosa which I am convinced made my legs have nerve pain and my bladder go nuts!!
What’s a good supplement I can take I’ve read that taking an antihistamine like Zyrtec or aloe supplements really help?
I would prefer to keep the cost as low as possible
can you do a video on mycoplasma or ureaplasma or do you have any insight on this in correlation to ic?
hey,i have ic and when i go to gyneco and do the test they found mycoplasma and ureaplsma and candida...so i m 100% sure that mycoplasma ureaplasma and candida are connect to ic
Did you get the issue fixed?
No..... I will try cystistrat
What's that?? I went on antibiotics like 3 weeks ago and still have symptoms. The issue it seems is that no Dr knows anything about it and even my results are confusing. For example, my uro didn't know what ureaplasma or Mycoplasma was but found it in the system. Then another Dr called to tell me I had an infection. But when I got retested the results were blurred and the other uro in the office told me she didn't think ureaplasma was a thing. It's all so confusing
Ureaplasma gives ci belive me,I don t gave anymore ureaplasma,but this or candida was the thing that gives me ic
What about decaf coffee ?
I have bladder discomfort that comes and goes..seems to be related to stress...also had no problem until ended menopause...coukd i have ic..no urgency.
Thanks for this, is decaffinated coffee okay? and I had acupuncture, which involved a needle in my ankle, and it was attatched to a small machine ,which was charged up, must say it worked while I was having it, but once the course stopped it came back.
I am interested in why the pelvic muscles can be too tight?? I thought the idea was to make them tight??
In Austin Goh Channel there is a video on this topic..I have tried for two days and it has improved so much...
th-cam.com/video/9DkcxiPlfWo/w-d-xo.htmlsi=NMEewU2SNGTSke5N
thanks shall have a look@@anav7774
I waited through all this to see if you addressed the actual issue with IC- if you only address bladder and pelvis you are not addressing IC in full because it comes with a syndrome of fibromyalgia, migraines, chronic fatigue, nocturia, etc.. In Canada it is recognized as a symptom of Lyme disease- no frankenstein treatments of the bladder and pelvis address the whole body issue that is IC
You are referring to IC subtype 5 in the Payne subtyping system… aka chronic overlapping pain conditions which has changed dramatically since I filmed his video. Discussed in depth in our live support group meetings and I do hope to make more videos on this too.
@@icnjill Giving subtypes was not mentioned back when I was diagnosed and most in the support group had the whole body issues, and diagnosis with cystoscopy. Now, I go into online support groups with people who have never had a cystoscopy that say they were diagnosed with IC- very confusing.
Please help me. I cant deal with this pain anymore.
Stay away from Mayonnaise it has raw egg in it and it will ruin your day, count your water intake, have you tried Elmiron it takes a month to work but it helps me, stay away from cinnamon, nutmeg and allspice
i am consider i don't drink coffie or pop or anyother acids its been 13 years i have tried every thing i am on elmiron i have seen three bladder doctors in past three years. i did pt i am going to see my forth doctor.
Thank you so much for your helpful video!
How can you say the OTC supplements are cheap? I can’t work because of IC and I can’t afford any of the supplements.
I drink organic tea. N ester.
What about As I?
Plus I am a type 2 diabetic IDDM.
Thank you
Is it possible to have all the symptoms of IC that I had 11 years ago and have it return after 11 years that last about 6mo? I have had pelvic floor exams ultra sounds done on bladder & how it empty’s etc..My MD believe it is IC where urologist feels further testing would have to be done before he could say that is what I had. No medication was ever given except Prelief over the counter which did help…no matter what diet I was on did not help seemed to have to run it’s course thank God I have been pain free for several months ...But the last time i had this was 11 years ago have you ever heard of someone that had it like this? Thanks
You should watch our last video on the subtypes of IC. Basically, we no longer think of IC as a bladder disease... but more of a pelvic pain syndrome or injury. Why? Because it's clear that more than the bladder is involved in MANY patients... such as the pelvic floor muscles, bowel, nerves, etc. So... I think it's very helpful to think of it as an injury and, yes, your bladder OR muscles can be injured again. The fact that Prelief helped suggests that your bladder wall had been injured/compromised in some way and that it has healed well. But, like many of us, it can be hurt again. Remember too that as we get older, our bladder loses some of its ability to protect itself.. thus becomes more vulnerable to certain strong foods like coffees and green teas.
Thank you
Jill Osborne
This gives me hope
How are you now days?
I live in the uk what alternative to prelief can I try? Thank you for all your advice its so helpful x
Kimberleigh Munn Try D-manose . I can’t cope with muscle relaxers or amitrypthiline ,I get irregular heart beats and feel like I’m getting heart attack .. natural remedies works sometimes followed with pelvic floor exercises
I am on D-mannose. You can buy them on Amazon in tablet and powder form. They have helped so much! You can take up to 6 per day and is derived from plants. I take one per day plus any others when I have a flare up. My support group recommended then to me a few years ago and I have them on subscription! (I’m in Scotland). Hope this helps!
Sophie Wright I’m also from Scotland Attending Ayr Hospital Under Mr Meddings having a really bad time of it with my IC , I’m trying D-Manose and Prelief Marshmallow root Hospital doing instillation (Cystistat but sorry to say I’m still suffering
@@margaretmeechan9490
Margaret how have you been doing,
Have you tried Elmiron, It takes a month to get some relief, the bladder installation didn't do anything for me.
Stay away from Mayonnaise it has raw egg in it and it will ruin your day, no cinnamon, nutmeg, or allspice
But we can pee in the ocean all we want and get our exercise..
Be strong, April 9 will be my 17th year with IC and boy have I seen the quacks come and go.
Peace and God bless.
how do you eliminate the risk of hairfall while taking Elmiron ? Is there any supplements to help reduce the risk of hair fall that are bladder friendly?
Looking for that answer too!
Faiza Bashir my hair was falling out too :(
Does calcium help relieve bladder pain?
Bridget be careful of to much calcium or you will get kidney stones like me
17 years of IC talking.
: ) well at least we can pee as we swim in the ocean and get exercise.
Peace
And remember YOU are not alone we are a Family.
I have a question that nobody has brought up. I began using Pyridium (Azo-Standard OTC) for bladder pain during an UTI as it stopped the spasming and pain associated with that. So when the tests began to come back showing no infection and I realized my IC had come back. For me a natural reaction to being catheterized during a life-threatening illness, but any catheterization created further damage on my severely scarred urethra, thus my IC, which had been in remission for 30 years, flared up and has been back intermittently for about 6 months. Anyway, because catheters, no matter the cause, always seem to do further damage, I mostly avoid treatment and/or further testing if it requires catheters. So I've been continuing to use Pyridium for pain and spasms--it doesn't help urgency or frequency for me, but those I've gotten used to--without any other treatment, or even a firm diagnosis. Is this dangerous? My PCP says it's safe, and didn't dispute my refusal to referral to a urologist. He knows that I know my own body quite well, thank you very much, and when I decide a treatment or referral is not in my best interests, there's little he can say that will affect my decision. All I want to know is if taking Pyridium about 3-4 days per week, once or twice per day, indefinitely, is dangerous? BTW, my injury was caused during a childhood catheterization by an idiot who somehow managed not to officially flunk out of medical school looking for stones, which I had. This was so many years ago that catheters were metal, and he injured my urethra first with the metal catheter, and second, forcing me to pass the stones naturally, and then when they got stuck, using a metal catheter, AGAIN, to force them out. All this with no pain medication, of course, since children "don't feel pain," or so my mother was told, despite my screaming hysterically. I am going to try the OTC meds, though. Where can I get Prelief? I've never heard of it. Thanks!
Sherry, most pharmacies carry Prelief. I tried every prescription, all the bladder installations, diet change ect. I found prelief and cystex to work great, better than any prescription that I took. Pyridium is NOT good for your bladder if taken more than 2-3 days. Most physicians will tell you that and it says it right on the bottle. I get pelvic floor pain, bladder pain, frequency and urgency EVERYDAY and I don't get more than 2 hours of sleep at a time ( i'm up 4-5 times a night to go to the bathroom) I have noticed I have been eating cinnamon buns for the past couple of weeks and I think the cinnamon in the buns is making my symptoms much better!! Bananas help calm the bladder down also!! Good luck!!
You can order prelief on Amazon, or purchase it at Walgreen. I use cystoprotek for my urethra IC and it help alots.Also be care full taking prelief if you a prone to a kidney stone. They a supplement that helps with stone it's call stone braker. you can purchase it at Amazon.
I am going through something the hospital says is typical UTI. Doesn't seem much like it. Usually on the very rare occasions i have had it, it goes away in 24/48 with really minimal discomfort and no trips to the Dr. This started with antibiotics for bronchitis! It's alarming, none of the UTC antibiotics seem to work in fact, I am worse now than when I started taking them.
This is all very confusing. I have been led to believe that lemon juice is good, ACV is excellent, vit. C likewise. Don't seem to be able to buy unsweetened cranberry juice, so i avoid that. I take Bicarbonate of soda. I absolutely avoid sugar, but sounds like you are using it to sweeten drinks. Is there any way out of this nightmare? Its SO debilitating.
Fuck this shit I need to get up to pee every 3 drops!!! I JUST WNANA CHILL
@@juleebanerjee4863 HEY I recovered after abstaining from sex for a year!
@@juleebanerjee4863 thank you for the concern 3 years later but not perfect but need to be careful of my vagina 😂😂😂
Hey, how are you managing? I don't know what the heck I have, but all day long I have the urge to pee and its not that much either, it sucks!
Be happy I was without sex one year and it came back🥲@@nicolewinters
Gill, what do you think of taking Nitrofurantoin 50mg (bladder specific antibiotic) for life? I have had IC with Hunner lesions for 21y. It has really helped for pain and F&U in the last year (I was bed ridden), but I nervous about taking it forever. Thank you.
Louise, I took Nitrofuratoin for my I.C. too and yes it does help. I was also told it's not something you should take long term however, I know us I.C. sufferers would do about anything just for a little relief!!
My bladder got i jured in a head on wreck. 2006, Its huge. And it feels like my insides are falling out
The urlogest said i need to pee more.
Ive been suffering greatly
Ok I drink ginger juice daily and I am guessing this is too acidic? That might be contributing to my issues.
I have IC, i have changed my diet and tried including alkaline to my diet and I still suffer from uncomfortable symptoms, they aren’t as bad as they are when I don’t eat certain foods, for someone with IC who doesn’t want to live the rest of their life with painful symptoms removing your bladder should NOT be something that is not an option unless you have destroyed your body with these barbaric treatments like distillation
I finally found a new urologist but they also have a urogyncolgy not sure what the difference are
In between wich steps do they make a cystoskopy to know more? Before step one? It feels really invasive.
Ask for a sedative..don't go thru this otherwise
Hi Jill, I've been having manageable symptoms with lifestyle and diet controls and physical therapy for about 5 yrs. A routine urine test lay week showed blood so my urologist, who appears to have a wonderful reputation here in the UK has said I need a cystoscopy and hydrodistention, and then likely treatments by catheter. I'm terrified that the cytoscopy will make things worse and irritate things much more than they already are. I'm also concerned by urethra damage by catheters. Is there an alternative to the cystoscopy with hydro? Should I opt just for cystoscopy simply for diagnosis? From what I have read is not as effective as diagnosing? However I'm very much against the hydrodistention. Thank you Jill, you're very knowledgeable and helpful. Melissa
Melissa Higgins hi there. I have had both treatments. I was awake for my first cystoscopy and asleep when they did it a second time along with the hydrodistention as well as stretching my urethra. Although I did get some discomfort after each procedure due to the catheter being inserted, it didn’t make things better or worse long term. You must remember, they are professionals and know what they’re doing. They know how to insert catheters correctly and know how much the bladder can take. You will be in safe hands.
I agree to everything they offer because if I don’t, they can use it against me later on when something else doesn’t work; “oh well you refused to try this so we’ll never know...”
I personally would recommend doing both. You’re already there on the table (so to speak) and it saves you from potentially having to go through it again if they don’t come up with an answer - I’ve also been in that position.
I had to go through it more than once due to incompetence of my first urologist.
Stretching of the bladder helps with retention of urine and helps with frequency and many other things (or so I was told). Although it didn’t help me, apparently it has helped others. It didn’t make things worse for me and at least I tried it so it’s there in my notes should the idea of the procedure ever come up again.
Regarding the blood in your urine, that indicates an infection. Perhaps you should be put on long term antibiotics? Your urologist knows better and if going through it gives you an answer (and potentially some relief with symptoms) then why not? I highly doubt it would make things worse in the long run, you may get an infection from the catheter which happens a lot with me, but you may get a diagnosis and closer to the correct treatment you need.
(Ps. I live in Scotland)
Hope this helps x
Hi Melissa . Have you had any changes since this post? I’ve been suffering for 16 years .any treatments that have helped you?
@@kellie4225 Sorry to meddle, just found 2 natural remedies that have helped me I would say 40% and they are Turmeric and Neem in an empty stomach. Best of luck
@@marite135 thanks so much! Any advice is most welcomed. I will give it a go . 🙂
hi, I am not dignosed with IC yet, but i have all the symptoms . I am very affraid of Elmiron and being an algerian woman , i can nor get it here , nor afford it online :( .I have a question: are supplements really prposed as a therapy by the AUA. I cannot find it on their internet page and it worries me a bit. would you mind posting a link i to their recommandations , please?
Hi jill! I have the interstim. I've had it for a yr and a half. And it's working some and then not working for frequencies. I don't know what to do
I'm 18 years old and I have chronic non bacterial trigonitis,and nothing helped me except my period with plays with hormones
tibial nerve stimulation made my symptoms way worse. I've been In a horrible flare ever since
I had breast cancer 5 years ago which was hormone receptor positive. I will finish the 5 year prescribed Arimidex medication at the end of September. The Arimidex blocks the estrogen production in my adrenal glands so therefore I have not had the hormone for the past 5 years. This has caused a significant problem with my IC which presently is in a major flare. My urologist wants me to use estrace cream NOW to help my IC. My oncologist says NO, NOT NOW OR AFTER I finish the Arimidex in September. I really don't know which way to go. Presently I am fighting an E coli UTI and going for 5 days to an infusion center for Rocephin IV's. A nurse I spoke with there said my body will produce very little estrogen once I'm off the Arimidex because of my age. So what hope is there for me at this crossroads?
diluted Cranberry juice helps for me including avoiding triggers like coffee, tea, chocolate, tomatoes....also avoid sugar and simple carbs like white flour.
@@momthree789 hey r u ok now? Completely
Jill, have you heard anything about CBD oil for IC?
Not directly though I do know that many patients have used MMJ very successfully and that IC is listed as one of the conditions that MMJ can be used for in a couple of states where it is legal.
the juice doesn't go straight into your bladder it's filtered by your Kidneys I don't understand
Thank you!
Will LiRIS be available for men?
Great video!
If you use prelief often it can give you kidney stones.I solved this problem with stone breaker supplement and baking soda. I Also, drink lots of clean water. I use zero water. I drink fresh organic juice made with beets, carrots, gala apple, kale, swisschard, and celery. Since baking soda can affect your blood pressure. That the reason why I drink juice and do coffee enema it keeps my BP.low. I have been using cystoprotek for 10 years, and it did help me a great deal. Also be careful with nightshade veg. Yoga excersive especially the one that concentrates on working you're pelvic also help greatly.
So I can't drink coffee at all?
Well, no... if you want to heal ! / feel better.
not discrediting all the valuable studies and research into ic but i cured my own ic and medical treatments did not work only temporarily improved symptoms. i believe ic is caused by a fungus/yeast/bacteria that has escaped from somewhere else in your body and has housed itself in your bladder due to a low immune system causing the bladder to be irritated and excessive urination as your body wants that stuff out of there but is too weak to fix itself. i cured my ic by taking strong probiotic supplements (2-3 times recommended dosages) for 12 months and following ketogenic diet (no grains) i ate avocado tomatoes banana because our body needs those things! the ic diet made me sicker because of all the excluded foods. probiotic pills made me flare for about a week after starting them as guess what your immune system is finally getting back missing or low bacteria so its fighting like crazy to get that gunk out of your bladder. after a few weeks i then doubled the dose same thing flares for a week but then felt better then tripled. i was on 90+ cfu per day. i followed ketogenic diet (no grains or starches) to allow my immune system to focus on fixing my bladder and not being bogged down all day on my digestion. it takes time give yourself 1 full year. you do not have to live with ic or accept it as a life sentence you can drink coffee again you can enjoy alcohol again. do not let it ruin your life. i am not a doctor at all but i insist please please please stick with probiotic supplements even if you flare initially for a week or more. each time the flare passes you will feel better and better and get terrific sleep and great sex again 😉 peace out. ps i am not a doctor just an individual who has cured my own ic from lots of my own research.
i have done everything she said and the foods you are talking about but never tried probiotic supplement thanks.
Hello, can you contact me: aicilaj@hotmail.com
What probiotics did you take??
Graham Langley , Hi please can you list which Strains of bacteria where in your probiotic capsules? So many over the counter- probiotics, but the strains vary . Thanks :)
Hello thank for that info. What probiotics do you take?
Jill, I thought matcha tea was okay for Ic? Am I really doing poorly by drinking it ?! Eeek
Tea is big trigger. Avoid
can you recommend a great ic doctor in LA
Susan Saul hi Susan, I know this is really old but curious if you ever found a good IC dr in SoCal? I'm looking.
Jill, I have gone through every step available. I'm at the point of pain stim, or pain pump. My doctor rejected my cystectomy request. What do patients like me do when a doctor rejects your request? I'm in CA, do you know of any surgeons who do not dismiss IC patients?
Bedridden over two years here!
Hi Miss M. Let's talk! You can find our contact number right on the bottom of our website.
+Jill Osborne thank you, I really appreciate it. I have my own TH-cam on IC so I've been sharing this with everyone. It's been quite a battle. I'm going to call you!
Hey MissM. My mom dislocated her hip when you called, hence the urgent yells in the background. She's still in the hospital but we hope to bring her home either tonight or tomorrow. Thank you for understanding! Hopefully I'll be here tomorrow!
+Jill Osborne I hope they are ok! And no worries, I'll try again tomorrow :)
Turmeric can help for bladder inflammation please help😔
I learned Turmeric irritates my bladder.
Omgosh, it is absolutely heartbreaking to see so much pain in these comments.
Please be strong! There is reason to believe that help is on the way... there are still clinical treatments being investigated... not to mention the incorporation of AI in the pharm. agency will speed up the devolopement of medication for chronic illness like this one as well.
Additionally, companies like Axonics offer sacral stimulating implants that numb bladder pain and urgency
My wife has been diagnosed with IC at the age of 26. Her doctor now wants her to take a medication that could cause her to lose her hair along with applying a catheter every day for the rest of her life. What can she do?
Jeremy English elmiron might be helpful to stop the pain after 6 months of use. There are natural treatments like marshmallow root and msm suppliments. Please ask if you have questions.
@@NPC13377elmiron is dangerous and can damage the eyes
I have ic it so painful
The best book for treating IC is by Diana Brady. The book is called IC NATURALLY. She has helped thousands of women and men worldwide with her natural approach to treating IC. Diana was named WOMAN OF THE YEAR for 2013 and 2014 by The National Association of Woman for her work in treating IC. Her book is available at Amazon Books.
Peter Glasser thanks!!
Thanks for info.going to take a look at this book 😊
I recommend hydroxizine, Marshmallow root, slippery elm team and lots of water, only water.
Andrew, lots and lots of water or you'll get kidney stones like me.
Did you try Elmiron yet, it took me a month to fill some relief.
Peace and God bless.
@@brot5246 Tried Elmiron for a short period, found best results with diet and lots of water. I also take Hydroxizine and Cardura. Elmiron was pulled i believe.. www.levinlaw.com/elmiron-lawsuit
Elmiron Lawsuits - Pigmentary Maculopathy
The Elmiron lawsuit claims that long-term exposure to Elmiron causes maculopathy, an eye disorder affecting the macula (central part of the retina) and a major cause of blindness.
Our law firm is representing individuals who took Elmiron and have suffered maculopathy or other serious eye damage.
she is an MD, right... 10 different chemical pills , nobody knows how they all interact with each other, side effects that might be worse than the pain
well, if you know better..Jill definitely knows more than many doctors out there. Before you critisize, try to get more information .
What do you think of Interstim for IC????????
Did you ever get the interstim?
I love lemon, have enjoyed it for 51 years, then came IC. Now I can't have it?
that's not clear, cause apparently lemon becomes alkaline in the stomach, but just in case, stop it for 3-6 months. No lemons, oranges, pineapples or vit C.
@@margauxkol8124 you mean we can not take vitamin C suplements as well?
No Mayonnaise either because it has raw egg in it and it will ruin your day, no cinnamon, no nutmeg, no allspice,
Don't you hate stopping a movie to go pee (every time)
Or waking up to go pee...
Or never ride a roller coaster ...
But we can pee in the ocean whenever we like...
God bless.
Thank you Jill !! xo
i have had the surgery and made me worse.
You had your bladder removed and it made it worse? Oh gosh, I’m so sorry.
Buenos dias desde colombia y padezco esta enfermadad y no hablo ingles me podrian colaborar con loq han usado pero en espanol gracias espero respuesta
Martha Quintana yo tengo está enfermera y no ay cura tienes que haces dieta no beber nada asido no chile picante no tomate no soda es malo cafeina no café estoy viendo especialista y me recetó trospium colorida 25mg y la otra es elmiron 100mg pero el dolor nunca se a mi doctor familiar me recetó para el dolor gabapentin está es para la ansiedad porque está enfermera está conectada com el cerebro necesita estar relajada tranquila también me mandaron a físico terapia ejersicio para la pelvis y vagina me an puesto tratamiento adentro de la vejiga que le día en resquio pero no miro ningun alivio un día después que tengo sexo es un dolor desesperado por 3 día también te puedes poner almuada eletrica de a los en las parte de abdomen o bejiga te bien estuve en tratamiento por 6 meses para prevenir infecciones de riñones que estaba teniendo cada mes yo me siento que no tengo vida normal com está enfermedad es horrible
Martha Quintana sabes la señora está hablando que ella padese de esta enfermedad y dice de las dietas tan bien dice de físico terapia los tratamiento que ay en los Estados Unidos ay muchísimas personas com está enfermedad
Is kimchi acidic?
It's very acidic. Even my stomach would reject it.
I hear everything you’re saying, but who the heck can afford all that? Who can afford to go to a urologist for goodness sake? That’s why hospitals cost so much. Because most people just end up having to go to the ER because they can’t afford to go to a doctor or specialist. And then end up with tens of thousands of dollars in debt for each visit to the ER.
Eliminating all salt from my diet is the closest thing to a complete cure I have come across. That means for the most part you have to carefully prepare all your own meals. I also quit eating meat, poultry and diary products. Salt is your enemy even when it occurs naturally in food. I am now not taking any type of medication for IC. I don't need it.
Awesome. I agree with you about preparing meals carefully.
@@icnjillhello jill,do you still get flares ? How often and how long do they last ? What are your triggers and what helps you the most ?
they do know and won't do anything
the only thing that's helped me is botox injections in my bladder.
I also didn't have to use a catheter, I was able to empty my bladder.
stephanie renee I have IC and when they use lidocaine in my bladder I have a sensitivity to it so I know Botox will probably cause me severe retention - so what positive effects did you have after getting Botox ? I was going to look into it
@@renee123711 l will be having Botox soon .did it help?
@@paulaalmeidareastephens3317 how are you now ? What treatments have helped you ?
@@kellie4225 no ma’am nothing has helped and my urologist has said Botox will leave me unable to urinate on my own more than likely and I was told Botox doesn’t take the pain away - has it helped you ?
11:05
DMSO? I see you don’t answer questions.
@@Tinyteacher1111 I receive hundreds of questions a day so it’s impossible to answer all the ones on social media. We don’t use DMSO much anymore now that we are phenotyping. This video is 8 years old and we’ve had new phenotypes and guidelines released. Check out our Master Class videos… specifically the one on bladder instills.
@ I know. I get it. I was just making an observation. Thanks for responding!
I will check that out! Much appreciated! I’m going nuts with this and dehydration from going to the bathroom so much! I wonder if it’s the Lyme I have or the pseudomonas aeriginosa from a surgery 6 years ago. Could be my spine. It horrible, and I’m only 4’9” and 98 lbs. I have AS and MANY more diagnosed issues, so something happened along the 21 year journey! Thanks!!?🙏
Amitritriptyline gives my bladder Hell!
Oh no why my doc has just prescribed this 😢
It sounds like this whole video is a test practice on women. Not a cure. They all seem risky and not helpful at all. Don't really know any helpful suggestions. By the time you get through your steps, the patient has been in pain for years.
Years ago you use to promote the natural approach to treating IC like in Diana Brady‘s book IC Naturally. Now you are promoting drugs and evasive treatments for people. The only step that is worth trying is step one. The rest of the steps are expensive and evasive and you should be ashamed of yourself. Seeing a PT might be good but massage therapy would be beneficial also with a properly trained therapist.