What People Don't Know About Interstitial Cystitis | Pelvic Health and Rehabilitation Center 

Wow! Thank you so much for shedding some light on a subject that has such limited information. It really makes so much sense what you are saying. Treat the pelvic floor issues and not the bladder. You are amazing!!

Thank you for this video! I have had this frustrating experience with urologists and so many visits to have a urinalysis done and no signs of infection! After a lot of research and over a year and half, I just was referred to a pelvic floor PT today!

THANK YOU! Your practice changed my life when it comes to this. I do not have UC and was sick of being told I did!

That was very Informative for me. The urethral contraction analogy was really helpful. That can certainly confuse people into thinking they have urine present when there might not indeed be urine present. Thanks for creating this video, and hope to see many more.

This video is very informative, the best I have seen since I started doing my research on IC. I was diagnosed with Ic after doing a myomectomy surgery.B4 I was told that the fibroids was resting on my bladder that was causing the frequent urination.After surgery It reduce a bit and I am back at square 1. I was referred to a urologist where I did urine culture and pelvic abdominal Ultrasound..They came back ok but I was told my bladder is small.The medications given does not work.

Well said! I've been saying this for 20yrs. Not all doctors/gyn/urologist. I agree my pelvic could be a part of the severity but 23 yrs ago endometriosis seemed to have triggered the bladder pain. Very good video explaining all variables bc I've felt like this from my own research for years. Thank you

I have instercticial cystitis BUT have also been diagnosed with urethral syndrome, and during a cystoscopy and dilation my urethra was found to be scarred, and narrowed, due to repeated infections. I have bladder spasms due to it, and antibiotics DO help, even when no infection is shown to be present in testing (which also doesn't pick up infection in the bladder wall)

I was in constant excrutiating pain for 2 years and saw many doctors that gave me no hope for a life without pain. Then, I saw this video and it was a game changer! I finally understood what was going on with me! This video gave me my quality of life back! Thank you so much ❤

This is the most helpful info I've found. I had a urogyncologist who hasn't helped me at all. I hv to cath 4 times a day for the rest of my life and I can't continue to go thru this. I am given an antibiotic and 2 days after the dose is finished, another "uti." I've taken so many antibiotics in this last year and a half I can't count them. 😭😭😭😭😭

Thank you for this video!

What about people who have had a bladder scope and been diagnosed with Interstitial cystitis, I understand Interstitial cystitis can be caused by issues with the pelvic floor but you can't say that that is the definite cause. At this present time in medicine we do not have an actual cause for Interstitial cystitis.

You gave me hope. I do get infections quite often despite everything I do for my health. I’ve never tried this. Thank you doctor…

Thank you for the information! Have you ever heard of anyone developing IC after a severe disc herniation that caused neurogenic bladder?

I have seen two PF therapists. Upon internal exam nothing reported unusual except 2/5 strength on kegels. I have since had a VBAC and my symptoms of urinary urgency are the worst they’ve ever been. I’ve been dealing with urge incontinence since I can remember. Constipation came about in my mid 20s. So I’m realizing my pelvic floor is dysfunctional. During my 2nd pregnancy my incontinence was so bad a landed at urology willing to take anything but they wouldn’t offer anything due to pregnancy. Oddly enough as my belly grew my symptoms resolved ! Basically gone in my 3rd trimester.. but came back shortly after delivery. In addition to what felt like vaginal stricture during intercourse. Whenever I attempt a program things seem great initially, I feel more control less stress response when the urge strikes and then as the program progress and more strengthening exercise are added I lose all progress and back to square 1. It is so deflating. In a couple weeks I am going to my 3rd therapist and hope that I will find some resolution. But from this video I’m hoping it is in depth as your practice appears. Is there any recommendations you have in order to help me convey the help I need ?

For now, what would be best exercises to help? Im trying to get into s PF physio & wait times are ridiculous! Would we need to strengthen the floor or relax bc muscles are too tight?

I've had UTIs before but I had a really bad one about 5 months ago. After immediate treatment I felt lingering symptoms that would come and go. About two months ago I had a major abdominal surgery, and lately, my symptoms have been worse than ever. I recently got diagnosed with hypertonic pelvic floor and just started PT for this. I'm very concerned I have IC caused by the really bad UTI and I'm at a loss 😒

Great explanation ,helps many im sure, please round off video with exercises to complete it .

I shortly had these symptoms with slow and burning urination shortly after I engaged my pelvic floor muscles to supporting singing in my upper voice register. I have an an appointment with a Urologist. My blood test for urine showed clear and prostate was also normal. What approach towards further diagnosis and therapy treatment will I expect the Urologist will propose?

I've had this condition since age 12. Hardly had a pelvic floor problem then and don't have one now in my late 60's.

I have IC with Hunner's. Tried just about everything (pelvic physio, amiltryptaline, botox, IC diet, no sugar, no grain) and now going onto a carnivore diet. 5 days in and feel better - IBS has abated. I may have to give up dairy to see if I can do even better.

I need a specialist in my area. Do you have any good places to start? I have IC and plevic congestion syndrome and endometriosis.

I know now there are many different phenotypes of IC but is there a way it can change? So I was diagnosed with IC in 2016 because I had 8 Hunners Ulcers in my bladder between then and 1 year later. Been on elmiron since then until 3 months ago and havent had anymore ulcers. Bladder has been more of an OAB type than IC since I started my botox after my IC diagnosis. I just think its weird i had ulcers and then they dissapeared.

Thank you for the video. Did I understand correctly that the tight pelvic floor muscles irritate the pudendal nerve? If the tightness of the muscles is gone, will the nerve usually calm down?

This is eye opening and informative, thank for sharing this information. 💛

I have not heard about any such therapy in my country :/ i had extremely severe frequency where I peed every 10 minutes, hence didnt sleep for days at a time. Tried a bunch of things and found an instill that helps so now I pee every 3 hours during the night. I also have a neurological disorder which might be the issue. I have very strong pelvic floor muscles and have never had urgency because of it. Can them being too tight be an issue too ?

I am sure the doctor read me as hysterical when I had an IC flare. The pain is so severe. 25 years of this. Pelvic floor dysfunction may be the cause of some IC problems, I do not know enough to say otherwise. But for me. one sip of wine or orange juice could flare me for up to 6 weeks. Dying my hair flared my bladder but also my whole body for days (realized this was the cause after I stopped dying my hair). Antibiotics also caused flares or reactions. Some triggers I never figured out. You know, I can take pain, but when you get no relief for the pain for weeks, and every moment of the day and night is pain, you start thinking very dark thoughts. But I am now better. I can drink a little wine even. I would never dare dye my hair. I think there are more than one type of bladder flares. And also why did I get so many UTI's for which I had to take such much antibiotics. The misery and suffering for these things is so great. It has to be taken seriously. I do not know what happened for me to be improved. Just that since I retired I was able to catch up on my sleep and have significantly reduced my activities and responsibilities.

Hi! Thanks for the video! So, this could absolutely be the reason why I have been diagnosed with IC, but my bladder looked 100% fine in my cystoscopy, I'm assuming....

I definitely have the burning and pressure. I haven’t been diagnosed with IC yet but my urogynecologist said I have a tight and spasming pelvic floor

Do you do telemedicine? I was diagnosed with this after almost 2 years of symptoms so bad it would keep me up at night

I drive alot. I'm 6 ft ,345 pounds. I quit drinking , I don't smoke. I'm committed to a plant based diet and I've also been drinking Alkaline water. My biggest draw back is Bread and caffeine it's so terribly hard to stop those two especially the caffeine 🥺. I have pain in my bladder and lower abs and some flank pain which has been my curse for the last 2 and a half months. No blood in the urine , however I do get some nausea which is not often and in the beginning when this curse of pain initially began I did lose my appetite. I took myself to the hospital and had a cat scan done with contrast I.V , I thought of cancer but they didn't find or see anything which is a blessing. It started off with constipation and it's the worse thing you can have as a driver , however here lately due to my change in diet with plant based foods and absolutely no sugar I've had 2 movements in a day , I feel relieved and the bladder pain does go away for a bit. I have been checked for UTI but it was all clear , when this first happened I felt like I was on fire. Nothing much helped at that time and I even tried that AZT cranberry supplement which was a horrible idea that was next level burn and extremely terrifying. I was able to flush everything out eventually. I'm going to see a urologist of course thing is I may end up getting prescribed amytriptiline I really don't want to get on meds and no offense I really don't like seeing doctors like at all , however I'm not sure how much longer this pain will linger . I'm starting to believe it's something with the muscles , I know I need to get my obese self excersizing , and I intend to. This video really solidified my thinking and decision making on some sort of plan for myself . Welp that's my two cents.By the way I just want to let you know thank you for the vid. It helps and I can see by other comments it's helping in some way the community here. Hope y'all here get well and pain free peace out ✌️.

I was diagnosed 20 yrs ago .. I was 30 .. got a book on the iC diet.. and if I drank a teaspoon of baking soda w small glass of water it really helped .. I think it made the urine more alkaline..lemonade and citrus fruits triggered mine .. I really don’t have any problems now.. there was hardly any info on it when I was diagnosed.. I had to order a book from Barnes and Noble..

Does kegels and pelvic floor exercises with rests In between help and of course drinking water? This seems to be helping me a lot

I have ulcerative colitis which is okay at the moment but recently since few months I keep having these urine urgency the urologist tested and found that i have uti they gave me the medicine asked me to test again and then informed me that uti is not there now although i did not feel any difference I still have the urine urgency almost 20 to 40 times a day. I found out today that I might have an IC but I am not sure if my urologist can help me because i keep visiting him but nothing comes up. Although i can visit my gastrologist to check if he can help me like he did in ulcerative colitis?

Is it common for palpation to recreate symptoms? I only have urinary frequency without pain and have went to a few pelvic floor physiotherapists without improvement. I don't seem to have obvious spots that can recreate the urge sensation. At around 100ml it can be a 3/5 urge for me. Really want to get on top of this! Will pelvic floor PT still work for cases like mine? Thanks in advance!

My bladder did not look fine had sores and inflammation. If it was just pelvic floor muscles then how come when I take the meds it feels better if it was just PD then meds wouldn't help.

could adhesions from previous surgery cause issues with the pelvic floor muscles?

Do you have exercises just for I.C. on one of your videos ? Or physio for it internal external? On a video of yours. Thank you :)

Interesting, however, i also have bleeding from the uretha and I've had this since I was young. Not sure if that points to pelvic floor issues

Right now the pain is so bad. I have intense, burning,urgency, pressure and pain in the bladder. My culture has come back negative. I took 200 mg of Pyridium an hour and a half ago and it did not help at all. Does that mean I could have pelvic floor issues instead of I C? How do I tell the difference?

I just got diagnosed with ic in April, I got a cystoscopy and they said my pelvic floor muscles are working correctly. I’m having a lot of vaginal pain as well and they prescribed me a probiotic and vagina capsules for that but that’s not doing anything and taking uribel for flares is making me sad. They also advised for me to get tested for a connective tissue disorder as well. I feel so confused and lost on what to do

If I eat food that are not recommended for IC diet - like spicy food, coffee, etc, IC symptoms (urgency, frequency, pain & burning in my urethra and vulva) will come back. Does that mean I have IC? Can pelvic floor issues be the cause of this as well?

Does my wife have this, her symptoms are a burning sensation internally and externally. Externally is around the labia, white discharge which is lumpy mayonnaise like at times. the itchy burning sensation can happen to her at anytime during the day time, we treated for thrush which helped for a short period of time say 3 months but now it's back again. Intercourse is quite impossible at the moment as she says it's painful and she feels it's on fire down there.

I have suffered with IC for over 25 years, my bladder is so tiny and damaged it barely holds 10ml now, so am losing it

Yesterday i was diagnosed with IC. I am very skeptical of this diagnosis because the pain and discomfort are more bearable when my bladder is full. Could it be that I actually have pelvic floor dysfunction?

When I need to urinate some time I feel nerve pain before or after urination and also normal pain in both situations in test it shows cystitis can nerve pain related to this. And also I feel urgent to urinate I feel pain in different parts of urethra all these are related to cystisis

Your knowledge fantastic, thus educating. Once PT for obturator inter. Pain. Once nerve pain less n less, my so called IC calmed down as did lichen sclerosis diagnosis where opening was closing from inflammation. You helped me understand. Been meticulous. (Was cuts, raw, white, itch for years.) to keeps urine off when urinate. Lic sclerosis diagnosis, yet no more symptoms Cleared up. So use cream rarely. Wow Now brown skin w/ pink there. Strange but ok… TU for educational info .

So true, I'm suffering, low quality of life, I don't sleep because I feel the need to empty my bladder 24/7, even though only lil drops come out..

I had an examination of my bladder, had pain for years, and the photo they showed me of my bladder ,was very scarred and angry looking. I started to have Acupuncture, they inserted a needle in an area of my foot, and attached it to a sort of tens machine, it helped a lot after only a couple of sessions, but then covid hit and I've not gone back. What I'd like to know is, why does my pain get worse after passing water??

Hi! Thank you very much for this informative video. :) Almost 6 weeks ago I had an UTI that lasted for a little under 3 weeks. Since the day it started, I took 4 different antibiotics, until a week after it was confirmed (through blood tests and a urine culture) that I had no bacteria anymore. However, ever since then I feel constant pain in my bladder and urethra, constant need to urinate and a lot of discomfort (burning sensation). I am very worried because I don't know if it will go away or not. Have you heard of anyone gone through the same? Can a UTI cause all this? What should I do? Could it be IC? Thank you very much!

you responded to a different person below : "We see a lot of people who continue to have symptoms even after an infection is gone. The bladder is especially prone to this. The nerves become very sensitive during an infection as part of their defense strategy. After the infection has cleared, the nerves may remain in their defense mode and over react to normal stimuli. For example, they might respond to a very small amount of urine in the bladder by making one feel like they have to urinate immediately. Additionally, muscles and fascia around the bladder that tense up in response to an infection, may not relax after the infection is gone. PFPT is very effective in all of these cases." I was wondering if the nerves which became more sensitive as part of their defense strategy against an infection will calm down/how they calm down? I fail to understand how PFPT can calm down the nerves which are in defense mode? I guess these are different nerves than the pudental nerve (?).

Plz can u tell if i hv no cystitis in bladder is it’s possible to have IC?

I reside in Portland Or, is there a facility specialized in pelvic floor rehab?

Hello, I have been suffering with bladder pain for years!!! Every time I go to the doctors, they prescribe antibiotics.... but the pain comes back... today, I was diagnosed with IC, and the doctor prescribed Amitriptyline. I am skeptical to take it.. any suggestions?

WOW! This is gold. Thanks for enlightening me on something I've never known about my condition!!!

How do you know that you have a pelvic floor disorder?

Hello, your video is great and gives me some courage again. I've been suffering for 2 years and during a bladder biopsy my urologist saw red dots in my bladder. And she said I have interstitial cystitis. I always have an urge to urinate but no pain. I can sleep well at night. Do you think the reason for me can be the pool?

What about drinking a can of coconut milk every day? Some say it works.

I couldn’t find the link for PT

I totally became a believer in pelvic floor therapy after countless doctors could not find out what was wrong. This is after having several hydrodistentions and then having my bladder removed. My issue was neither bladder, muscles or nerves but my pft found an abnormal piece of tissue between the vulva and vagina. One small piece of tissue that caused years of excruciating pain. I did go to 2 that did not find it but then was referred to the best in Florida. She found it and I am forever grateful!

this makes me upset that my doctor didn't listen to me, and kept saying to simply avoid caffiene. He did STD pee tests and all that, all came negative .. just kept telling me to avoid caffiene, he didnt look into anything related to this at all. (I DONT DRINK ANYTHING WITH CAFFIENE IN IT)

Why does mine come and go sometimes? Why do certain foods or drinks make it worse?

I was diagnosed with IC when I was very sick from breast implants. It went away after I had my implants removed. Now, after having Covid, 2 months later, I think I may have it again, or it’s something else. If I take one sip of water, I have to pee! It’s so annoying!

what about blood in the urine? I was diagnosed recently with interstitial cystitis and you described all of my symptoms but the blood in the urine..I was told that the blood in the urine is what causes the pain but I have pain for hours and THEN I get the dark colored urine or blood on tissue , the pain comes first, not the other way around. I was told to take AZO or gas ex and to avoid caffeine/watch what I eat

So it's the nerves around the urethra?

What about Hunners Leisions

My urologist told me there is no test or cure for IC. I had a cystoscopy and the biopsy was normal. I only have IC flare ups after intercourse.interspersed.

my daughter has 16 years old she experience from interstitial cystitis but during the menstrual cycle her situation be very good .. what the relationship between menstrual cycle and interstitial cystitis . and if we can treatment her from this relationship?

Can you have really bad pelvic pain with IC?

I've been referred to physical therapy. They have no available appointments for 3 months. Ridiculous

What’s also weird is that when I go to sleep abs lay in my sides I seem to have to pee more or the side of my bulge-my left side it’s uncomfortable. Last night was better though. But then my Bladder wouldn’t relax so I might need a muscle relaxer. I take cantharis abs that helps I just didn’t get new supply until today. 😊

I had pressure or pain but no urgency at all. Most pain was after urination. A full bladder felt better. Just by chance i went on HRT for perimenopause. All bladder pain went away. Seems like I needed more estrogen and progesterone used vaginally.

In all your video you are sharing the problem and its symptoms, but u always stay silent on the remedy part??? Whats the remdy for such people may like to clarify??

Doctors have told me I have IC 10 weeks after contracting covid. It’s awful.

Can ic make back pain

Didn’t think I’d be back on the internet searching up IC relief. I haven’t had a flare up since this first started 3-4 years ago. All because I drank White Claw 🤬

Im suffering from 3 years pain burning itching in penis and pain burning in testies burning urination painful urination irritation urination and pain itching irritation in inside area of prostate dr told me this is interstitial cystitis how to cure it plz tell

What about autoimmune disease. That's what mine is caused by, yet you fon't mention it.

How to cure this thing

Can IC be cured?

That’s great and all but wtf do I do with this information. How do I stop feeling pain

I'VE READ ON TUBE YOU WHERE ELMIRON CAUSES BLINDNESS

I'm in the UK and I have no idea who to turn to that will understand my symptoms. All the doctors I've spoken to are useless

You KNOW you have Interstitial Cystitis when the Hunners Lesions have to be cauterized !

Hello! I'm really considering going to a Pelvic Floor therapist next week as I have the unending urge to pee all the time even if I don't drink a lot of water. Were you suggesting that a Pelvic Floor therapist would be able to see why this symptoms are occuring?