Can you get better from Interstitial Cystitis/Bladder Pain Syndrome? 

I've been suffering from a painful bladder for 6 months non stop, day and night, no medicine or painkillers were helping, the doctor didn't give me much advice either. Then I started reading about what can trigger the bladder and I cut out tea, red wine, soft fizzy drinks (these were my main triggers) and reduced coffee. I've been pain free ever since, as long as I don't drink these (the moment I have a cup of tea or a glass of red I get a bad flare up) - I know everyone has different triggers but I thought I'd share this in case anyone would find this helpful. Take care everyone and remember that the pain will NOT go on forever xxx

For those suffering, I’m also finding for me that addressing underlying emotions that are creating tension and inflammation in that area is helpful. I’m finding anger, rage, things coming up about feeling uncertain and unsettled as a child and around my parents divorce. I had a first flare up last year, and now having another. Finding abdominal exercise especially sit ups is my main trigger. That and pelvic floor issues postpartum. Fascial health and healing the emotional level is key just as much as the physical!

Great video. For those suffering, I am in the US and suffered for 3 years from IC/PBS. I never had urgency, just achy bladder and awful burning urethra-like glass shards crushing around. Pelvic floor therapy was a Godsend! I am rarely bothered by the condition 4 years later and when I am (usually after overdoing exercise, particularly too many ab exercises), I do my prescribed stretches, reverse kegels, and trigger point relief. Works like a charm! Hot soaks with Epsom salts work help too. Don’t give up hope! You can get better. Hugs to you all.

I feel like crying I have suffering this for two years and I am here on my birthday researching on my bladder

Thank you for making this video!!

Thank you so much for making this. I just had a bunch of tests and now we’re going onto a CT scan and I’m thinking I could have this. I’ve been so upset thinking I could never live a normal life and you helped give me some hope.

Thank you, for this!

Sitting here before work trying to make sense of IC. You’ve given me a lot of hope. I’m going to go back to my Urologist and see if it’s a possibility to get me in with a physiotherapist.

I got IC when I was 19 and that was probably the worst year of my life... I managed to get it under control with the IC diet and it slowly faded away. I only had a handful of flareups in my early 20s ranging from a week to a month. Then I went 6 years without a flare and here I am at age 30 5 days into a flare and feeling so discouraged, I thought that part of my life was over

Thanks for your expertise and hope. It opens my mind and helps me relax, I've had bps for 11 years and its isolation painful and exhausting. Thanks for the vision to heal!

I’m suffering 10 years that’s why I’m raising awareness on Interstitial Cystitis too while coping with my music

You just gave me a second wind, thank you! Hang in there everyone, we will get through this

Reducing stress is key, as is releasing the pelvic floor muscles. It's hard to find the right help in the UK though and GP's seem reluctant to refer you on. One thing I do know, after much research is that opioid meds can make things worse. Apparently, opioids can give rise to pelvic floor spasms, as can urine retention caused by opioids. Cut down on the opioids is a start - and drink more water. Too much sitting can also cause a problem!

Thanks you I just received my diagnosis of ic. Was a very sad day but you gave me hope 💞 thank you

This disease is hard because most of the time people won´t believe you are in pain. I have had doctors saying my pain was normal and just an infection that would go away with antibiotics, but it never did. Took me a whole year to actually have a doctor help me and listen to me and finally I found out about interstitial cystitis. It´s being very difficult to learn how to deal with pain, and what helps and what triggers more pain. I wish I could find only naturals ways of getting better because the number of antibiotics and painkillers I have taken is ridiculous. Personally, I believe I got sick because of stress. I had a normal bladder and never had infections, maybe only once when I was a kid, and didn't know how to clean myself properly. Never had major problems in 20 years, until now, the most stressful and unhappy period of my life. I am exhausted from feeling pain and mostly not having doctors that really know how to treat this disease. I hope I get better and I am trying to learn through youtube since doctors won't really do anything but give me more meds. Bless you, for actually caring about it and helping people with your videos.

What version of cured would you say no to?

I had Bladder pain and cut out chilies', fizzy drinks ,coffee and foods that cause acidity but the thing that helped the most was taking citrosoda every morning or when in pain and this relieved me and my pains went away after two weeks of taking citrosoda every day ....i hope this might help someone out there , as it was unpleasant and so painful ...i keep sachets in case i feel like im going to have a flare up ...Please don't give up as we are all different and keep watching your diet as that's the most important thing that helps ...God bless you all.

Of all the syndromes and diseases I've got, this one is top 3 for devastating life as I knew it. The lupus and the fibromyalgia are shit as well, but this one sits in my gut 24/7 - 7/365. A better video title might have been "Is There A Cure For Interstitial Cystitis?" I'm about ten years in on this one. It began with a back injury and surgery and has been my companion since. I've cut so much from my diet that I'm almost down to pablum. (edit) I just watched the whole video and here's my takeaway: There's some unnamed stuff I can do to help with symptoms and that it'll go away when it goes away. You've neglected to mention the things that might help it go away but I know them. Pelvic floor exercises, relaxation techniques, cutting out food after food after food, cut alcohol and coffee. Don't eat 40 bags of Starburst® a day. NOTHING. Ten years and I'm headed up to the roof before this year's gone. I'm whining, Jilly. Any advice?

Again nicely put into perspective. Just to drill down a bit more into the topic question, I'd like to ask do you get clients that have full recovery from dietary triggers? I love my food but since getting chronic pelvic pain I can't eat or drink a lot of my favourite things (curry, tomatoes, beer, wine, etc).

This is so fucking stressful , I just want this shit to go away ,i feel bad knowing there are people who go thru this everyday , is so inconvenient , painful and the fuckin urging to piss piss piss , it's driving me NUTSSSSS!

Thank you so much for this video. I'm newly diagnosed and it's so nice to hear that things can get better. I'm willing to do whatever it takes!

Can fasting help cure. Intermittent fasting omad?

Yh there’s hope I could cry x

Pelvic floor stretching ,IC is the most horrible thing ever . It never goes away but stretching helps a ton and sometimes u forget u have it hope this helps someone

I started having issues with my bladder 3 months into my pregnancy. Had two OBGYNs and been on tons of antibiotics. 3 years later and I’m still having issues. Started seeing a urologist 2 years into my issues and they both seem to be at a complete loss with helping me. This is a very depressing life to live.

What is your view of the Mona Lisa Touch Laser? My gynecologist thinks that will help me. I just had the first of 3 treatments. I’m not sure...

Is it normal to get sensitivity when passing wind

For the past 11 months I have been struggling to find out what is causing my bladder pain I went to pediatric urology and they told me they weren’t comfortable diagnosing me because not a lot of pediatric kids have it and then I went to a obgyn and they said the same thing now I’m going to a new practice praying they can help me with pelvic floor and interstitial cystitis I was wondering if you have any suggestion for calming the bladder because at night I struggle going to sleep when all I can feel is the urgency to pee.I am on a lot of Medication that is supposed to help but doesn’t I’m at a lost and just want to get better sleep.

I have this for arpund 8 years, slowly progressing until I can't take it anymore. The pain surfaces when my monthly period comes. 3 days after mens it will go away but now the pain lasts for 7 days after mens. Now I'm having constipation and frequency to poop and pee but nothing comes out.

Just got diagnosed with IC, my pelvic floor is in level 10 pain, especially the lower right side, I hate my Urologist, should have seen a gynourologist - I'm feeling discouraged right now, your videos are helping - I hve read the the first course to help IC is diet change

Do u do private sessions

I been dealing with this for almost three years and lately it's been getting worst. Today is one of those days I can't get up from bed I'm in so much pain the pain meds the heating pad is not working I can't sleep I can't work I can't shower I can't be a wife I feel useless and like I have no life and I'm dragging my husband down with me. I want to wake up one day and not be in pain. Women deal with so much and suffer so much to add this on top of everything else and God is no where to be found. I'm losing hope I'm losing myself. 🙏😭😢

The key idea that she mentioned in passing is that one mistake and the consequences will last "for a couple of months or a year".

can cystitis in men be taken care of ?

A lot of parallels between IC and tinnitus. Everything you said makes perfect sense. The brain is a powerful magician and it’s definitely possible to trick it out of being hypersensitive. Great video. Thanks ♥️

I am 54 and live in a major city in the USA so have access to good quality doctors and physical therapists. I see a specialized pelvic floor therapist, a pelvic rehabilitation doctor and a urologist who also works with pelvic related issues (my first urologist did not and it caused me 7 months of wasted time and unnecessary pain and suffering... I'll stop there but could tell you some horror stories). I have a history of frequent urination for maybe 25 years (by frequent I mean that if I am watching a TV show I can pee every commercial), but I lived with it and it never stopped me from living (going to work, on vacation, etc). However, in April 2020, about six weeks into the covid quarantine, I developed unbelievable penile pain and a need to urinate (stress related? I don't know) as if Niagara Falls was in my bladder. No matter how much I voided, the pain and feeling that I had to go again persisted. I also had a terrible months-long stuck-in-an-orgasm-feeling (I don't want to say it is gone... perhaps it lingers). All of this was a hellish experience. I won't go into the step-by-step story that has happened to me since then but will give a few details. I was given a test for a urinary infection which came back negative. I was given a cystoscopy which didn't show anything (but hurt like hell despite the lidocaine injection... so maybe my dorsal nerve is involved?). I went for a pelvic scan which didn't show anything. I was given various bladder and prostate medications such as solifenacin and finasteride and myrbetriq. I had trigger point injections and physical therapy (still ongoing). None of these things truly helped or helps. By the way, my health insurance covers just about nothing related to all of this (thank you politicians). I also had a test which showed that my bladder can't hold much liquid before my brain tells me I have to urinate (of course, I knew this before the test and could have saved them the time of doing it, not to mention my own humiliation having a catheter inserted by a woman with another one standing by). What started to help somewhat (that is, take the edge off sometimes) was when I found out about lyrica and amitriptyline (just recently weaned off of it after several months) and diazepam/baclofen suppositories (I discovered these things at about the same time I discovered pelvic floor specialists -- December 2020 & January 2021 -- which I had never heard of and which my original urologist never bothered to tell me about). Which in particular of these medications helped or helped most I'm not really sure because I was on multiple things at the same time and not living in a bubble being studied by a team of doctors. As I think you said in your video, life happens. It has now been more than 1.5 years since all this started and next month I am scheduled for an InterStim (a pacemaker for the bladder). Sitting in the car (and sitting in general) often makes everything worse... having to urinate becomes much stronger and it is accompanied by an ache, mostly felt in my penis (this for a man is truly frightening... I have just wanted to rip the damned thing off!). I have days or parts of days where I'm feeling somewhat better (the symptoms are there but they're all more mellow and manageable) and then days when I have to pee every five minutes with real urgency and sitting is just terrible (a strong ache along with the need to pee). There have also been extremely short periods of time when I didn't feel much of anything... and then it returns. It is a rollercoaster of a ride and I just want to get off the ride. I want to get out of my body. Today I tried something different. I put on a heat therapy patch purchased at my neighborhood pharmacy. It is about 5" by 4" and I placed it below my belly button in my pelvic/bladder region. It is now almost 6:00pm and the last time I urinated was about 10:30am. So it has been about 7+ hours during which time I have had a good amount to drink. Have I had to go all this time? Yes! But it has been mostly easily manageable to put it off, to place it in the background. It is getting a bit stronger now so I will void after typing this (but if the past is any indication, I will feel the need to go within seconds to a few minutes after going). Did the heat patch help me or is it just a better day (keeping in mind that my better day is still someone else's nightmare). I don't know. I will continue with the heat patches for a few days to see if this current trend continues. I have been told about meditation and mindfulness and breathing techniques and try to do my best at these things but I'm not particularly talented at this because these things are a talent unto themselves and can take months to years of practice (at least it feels that way to me). I imagine a Buddhist monk would be good at these things (for some reason I imagine they'd be good at meditation and mindfulness). If my brain truly has the power to help me, I don't know how to tap into it. Jilly, if you read this and have a few wise words or maybe a speculation what is wrong... whatever, I would truly appreciate it. Despite the help I have been getting, this has been a very lonely experience with many dark days and dark thoughts. I so much want to get better. My wife and I retired in June 2019 and then this hit me (actually, it beat the crap out of me -- I have literally been on the floor writhing in pain) less than one year later. Living the rest of my life like this would be torture. Again, if you have any wise words, advice, professional diagnosis (don't worry, you won't be held to it but if you know something you think can help me, please, please, please tell me), that would be most appreciated. Thank you.

Watching these videos and knowing there is a such thing as Interstitial Cystitis is the reason why I freaked out over a normal bladder infection, luckily it was only just that before I got healthy again

I went 4 years with no symptoms at all but it came back. It is common for it to go away and then come back. I have a friend who has IC and her IC went away for 10 years but then came back and she's now had it everyday for the last 8 years.

I've suffered 16 years tried everything you can imagine. Currently in 7 months flare not a single day of from server pain. I'm house bound at 43 😪

I have suffered with this all my life ever since I had a hysterectomy and then a horrible ordeal with kidney stones for yrs .I'm 71 and nothing has ever helped what so ever .

why do i have bloating with tight pelvic floor muscles please reply thanks

I have suffered from this horrible condition for close to 30 years now.

I've had lC for 19 years. It so hard. I don't see doctors any more the ones l have access to have no clue Lime water alkalines my stomach which helps a bit Only found out and getting some relief Pelvic floor exercises are a must .good luck all x

I have had chronic cystitis for three years. Had cystophy, seen more than one urologist, none can give any hope of improvement just various types of painkillers.

Also constipation and straining could also be a cause

Can you show us some stretches that can help and tips?

I have IC and I get no help from the medical system. I have had to do my own research, trying many things to relieve this pain. For me it is constant burning, acid, shards of glass like pain in my bladder and urethra. I constantly have blood in my urine when tested also. I have cut out so many things from my diet also. Taking supplements hardly helps so here’s hoping I can try and get some pelvic pt and hope that helps. I’m at the end of my tether

There is no pain in my case.Is the pain necessary accompanied with IC always?? Please reply.I have irritable bladder syndrome.Some times I feel relief after sexual Activity.

Had this since I was 11 I’m 23 in two months, diagnosed with this. My life’s a living hell. I have nearly night suffering on towels pushing my bladder muscle constantly to get relief , constant peeing non stop. Burning all the time down there, can’t leave the house most days, can’t stop peeing... wet my self in my sleep dreaming I’ve gone the bathroom in my sleep ... standing on cold floor in the kitchen I wet myself .... everything the gp can give me I’ve had.... they now think I have endrometrieties ( can’t spell it ) suffering ... had enough ... Never going fix this I’m cursed

For those who are suffering from bladder pain, and are interested in the mental connection to that part of you: Bladder Problems correlate to Anxiety. Holding on to old ideas. Fear of letting go. Being pissed off. Here is the affirmation: I comfortably and easily release the old and welcome the new in my life. I am safe.

But my IC is accompanied by leukocytes and NO nitrites in my urine. How can I cure the microscopic hematuria?

Heat helps me

How can any of you endure this and still work full time to pay the bills and hospital bills? I'm not living anymore in pain all the time, lasering and making the bladder bigger just didn't help and it hurts more now :( and the doctor said that was the final thing they could try for now... :'( I just sleep outside work hours in work hours I just hurt so I can barely function and go to the toilet so much that my collegues are getting annoyed :'( Anyone tips?

I'm male, 47. IC has ruined my life. The urinary issues are bad enough, but how are you supposed to exercise or lose weight with IC. Biking is out, Running is out. What can I do to lose weight? My diet is already decent but I still seem to gain weight.

You seriously are charging people who suffer from IC $180 for information? You are trying to cash in on our pain and suffering, and that is not okay.

I have bladder pain and even small amount of urine put pressure on my testicle vains .so I feel pain around testicle...please advise me... No doctor understand my condition...I m sad everyday...poor quality of life...

CAC Liver care tablet of CAC is a herbo mineral pure ayurvedic formulation. It mainly works in balancing pitta doshas. liver care tablet consists of ingredients like Kalmegh (Andrographis paniculata), Kutaki(Picrorhiza kurroa), Bhumi amla( Phyllanthus niruri), Giloy(Tinospora Cordifolia), Yavakshar( Hordeum vulgare), Imli Kshar( Tamarindus indica), Mukta Shukta pisti etc. Its main function is to improve the circulation of blood. it works against burning sensation of urine, removes urinary infection and other inflammatory conditions.

I'm surprised no one is talking about a key factor in management of BPS. DIET is incredibly important and key to feeling better and out of pain. Anyone suffering from BPS needs to investigate foods you can and cannot eat. Changing my diet, doing pelvic exercises and of course drinking a lot of water has given me the tools to manage this quite awful condition.

Cystitis and BPS is different Bps gets better with physical therapy Cystitis is more like a wall infection that thry have still not yet come up with a antibiotic for it

Cured means eating whatever I want without having to worry

Myne was so bad I had to refrain from sex for some time. It felt like I was having a uti. It was so depressive.

I have chronic cystitis. I have been treated with pentosan and other antibiotics. Does quality of medicine depends for treatment? Because the pentosan which i have been used I requested from india. And is there any medicine which make relief the pain and burning after pee ??

This has ruined my life for so long I have stopped leaving the house and I showed maybe 9 \ 10 times. I still smell of urine!! It burns me every single time my legs and feel go numb I'm on the toilet so long. I desperately need help. Thank you

Can you all on you tube just get to the reasons quickly not prattle on !

It's been 12 years already enough

No** 32 years, every procedure & medication tried with zero improvement.

Do u have email add mam?

If this can help but one person then fantastic. 7 years of unexplained “UTI’s” No bacteria ever cultured. Urogynacolgists,Urologists, cystoscopy no answers or reasoning. DNA testing also came back showing nothing. Of recent it has come to light it’s nerve related pudendal neuralgia. If you have an unexplained what feels like “UTI”consider looking at pudendal neuralgia as a possible cause. I wish I had known this years ago.

stop drinking everything except clean spring water and go see a gonstead chiropractor !!! this includes not drinking coffee, tea, soda, fruit juices, kombucha, beer, liquor, wine, etc etc.

You've done this for years and yet no mention of the role of oxalates in this? JFC

IC is called the suicide disease for a reason. Most people never get better.

Hello there, I have had this awful syndrome for about a year-and-a-half now it started out with perimenopause when I was 43 I will be 48 next month, my OB took me off my birth control pills after that it was hell because he never put me on nehrt to replace what I lost. After that I was in the hospital 17 times in less than a year from 2019 into 2020 during this time they gave me an MRI, CT scan, pelvic test the hospital saw inflammation but at the same time they had no real answer so I continued suffering on and off with UTIs or just cystitis without the bacteria I have been in such a dark place I just want to die I don't want to deal with the pain anymore he has ruined everything in my life including my 5-year relationship he is 10 years younger than me and when I had my hysterectomy done a year ago December 2020 in the thick of covid-19 it was then that I realized what really happened they went in to do my hysterectomy and to remove a prolapse what they found was a gaping hole in my bladder because my c-section scar from 28 years ago cut into my bladder, and my kidney to the point where I had to have a stent put in on the left side and wear a leg bag for 4 months during that time I had to go twice to be filled up with water to see if I was still leaking after my surgery so it's been pure hell it looks like a five-year-old did my surgery the way the scar looks but that's the least of it ever since then I have been suffering with the worst inflammation pain in my pelvis area and my genitalia I end up being up half the night going to the bathroom if I only get up 3 or 4 times it's a blessing give you an idea of how bad it gets I go over 30 times a day, I just started taking pumpkin seeds supplements and magnesium and vitamin D for days ago and I was told that these things will calm the bladder I'm willing to try anything at this point, my urogynecologist tried to push elmiron on me but I'm scared to death due to the side effects choose your vision orbi pain-free of the bladder talk about a double-edged sword! That's my story but if this is living then this is a death sentence to me I pray to God I find my answers because all I do is look at all the medications that I take knowing that I have a way out and that scares me I have always been a person that loves to sing write poetry and all those things have slowly faded away because the pain just overpowers me emotionally and physically I need help ☹️ ☹️

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