What is Interstitial Cystitis/Bladder Pain Syndrome?
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- Опубліковано 11 лип 2024
- Suffering with pelvic pain or IC/BPS? Check out my playlist all about IC/BPS and what treatments are available to help you get yourself better.
You can find more info on my blog and sign up to my newsletter back at the website: www.jillybond.com
Information contained within these videos is provided to inform you of potential therapies available, and to improve the general awareness of pelvic health physiotherapy. It is not intended to be a replacement for medical advice, and I advise you to have a full assessment with a qualified medical professional as well as seeing a pelvic health physio. Please do not try any techniques without seeing a professional first to make sure that treatment is appropriate to your needs.
Watching this video has made me so emotional. For three years I have had chronic bladder pain and it affects me every day. I have had intravesial therapy which gave me an awful infection and have been passed around many doctors. I am only 19 and I don’t have a life, I often get extremely down. This all started after I had genital trauma three years ago. This video has really resonated with me, thank you so much.
Try relaxation and breathing all the way into your stomach it has helped me a lot also stretching
I have found that alkaseltzer and tums help a lot. Staying away from spicy, carbonated, caffeinated, salty, or acidic food definitely helps as well. If you’re having a really bad flare up stick to a bland diet for about 1-2 months. Drink plenty of water and milk during this time (the alkaline of them really helps me during a bad flare up). This has helped me since I was 5, now 22, hopefully this can help you as well.
Btw, phenazopyridine is a life savior to me if I can’t manage the pain. Now I use uribel since it’s both a pain reliever and an antibiotic (sometimes during a bad flare up we can’t tell if it’s a bladder infection or IC).
Thank you all so much for your responses. I can happily say that after another cystoscopy that found no signs of IC I decided to take matters into my own hands. I was at an incredibly low point in my life after being told they didn’t know what was wrong with me. Luckily I have been able to transform my life entirely by cutting out acidic foods - tomatoes in particular, chocolate, citrus. I notice if I eat acidic foods, I have a flare up 12-24 hours afterwards.
I had surgery recently and increased my water intake dramatically and found that drinking loads alleviated my symptoms. I wasn’t drinking enough because I was so afraid of going to the toilet. They are such simple changes to make but being in that state is so psychologically challenging. I still deal with IC every day, although being misdiagnosed, and it is a battle. But now I feel I have so many more paths in life opened to me whereas before I felt every opportunity was incompatible with health.
Try to find a female Uro-GYN (Urologist and gynecologist) who specializes in Interstitial Cystitis. They can often be found at larger teaching hospitals but they are few and far between.
Hi Jilly, you mean well and make some good points. Yes, it is true the brain can overreact and make the pain seem worse, but, the other side of the coin can be, if you fix the physical problem, you will also fix the mental problem as well. When I'm having a great day and my physical pain isn't there, mentally I feel terrific.
Absolutely! The physical is not Always the cause of the pain, and that's my point. Hope it's been helpful.
@@jillybond1502 I think you got what I meant. Too many doctors try and make it sound like it is ALL in your head. I think that is just an excuse when they can't help solve the problem.
Totally agree 100%
I think it can turn into a feedback loop, which is what triggers a chronic problem. The brain informs the pain and the pain informs the brain. I think this concept applies to many chronic conditions and it’s our job to interrupt that feedback loop and start delivering new messages to both the brain and the body. ❤️
@@hautemama85 Yes, but in order to start sending new messages to your brain, the pain you are feeling has to be removed. That pain we are feeling is our bodies telling us, "SOMETHING IS WRONG AND NEEDS FIXING!". Too many doctors focus everything being the brain. What they don't admit, or can't find an answer for is finding an answer to what is causing the pain in the first place, and how to fix it. No doubt, there is a cycle taking place, but if you want to stop it and start feeling more upbeat, your confidence will be fixed quickly once you see results from fixing the physical problem.
Thank you for sharing your knowledge! It's so helpful!
Thank you this makes a lot of sense too me!
She is spot on. ☺️
So informative, thank you
Thank you so much for this, I have this condition and I can go months without a flare up, it makes it hard for people to understand the pain I go through when it eventually does happen. And unfortunately one time I actually did have a UTI but I thought it was a chronic bladder pain flare up because the pain is so similar so I didn’t go to the doctors and the infection got super bad. I knew without anyone telling me Chronic bladder pain definitely is a misfire of sorts of the brain because warm baths can stop it for me or just laying down and thinking about something else, reading a book, etc. Its very real though and very painful, I don’t have physical trauma that I am aware of but I have severe anxiety from trauma in my past.
Gracias por su informaciòn.
June 11 I had a bladder biopsy. Had a CT scan of the pelvis that showed gross inflammation of the bladder. Am waiting for an MRI. I have severe excruciating pain that hasn’t responded to 2weeks of Bactrim and 6 days Of Prednisone. My Urologist gave me Tramadol to take for 2 days only post biopsy. My PCP prescribed the Bactrim and Prednisone. Neither my Urologist nor PCP has prescribed anything for the unbearable pain. It’s a living Hell. My MRI is still 3 days away.
21 plus years and counting with almost constant bladder pain, even with an intrathecal morphine pump and breakthrough meds ( meds help a lot, though). I’m so tired and frustrated. It’s not just my brain. I have real, visceral pain when you press on the bladder even just a little.
PLEASE HELP WITH RECOMMENDATIONS!! My daughter is brought to tears explaining things to me. She is tired and worn out, worried about being on antibiotics most of this pregnancy. She is 6 months and do in the beginning of November.
My daughter is going through this, she has been having issues for the last 2 year. She's been on Cephalexin nearly constantly. It is often prescribed even though she does not have anything growing in the urine or she just does not have her urine checked. She is now pregnant and the symptoms are exacerbated. Every test is inconclusive. The next thing is MRI impossibly surgery after the baby is born.
She has had the dye test, CT scan & now sex is painful. I'm not sure if it is bladder pain or what period
Jilly, do you know why we flare worse depending on where we are in our menstrual cycle? Ovulation and right before my period for me, but others only experience pain during their period or right after. The only pain I'm having is these two times for me, but the pain is so extreme I can't work full time. I contacted the ICA and they had nothing to offer.
What about if you always have leukocytes in the urine and no nitrites?
I went to the hospital for my pain in my stomach. They told me I had inflammation in my bladder and small intestine, my small intestine has fluid in it too. They said all my test were normal but that. I went to a urologist and they did no testing but said that it was ic. When I read online they mention that doctors have to rule out anything but they never asked about my back problems. I read that your pudendal nerve could be the reason for the ic or misdiagnosis of ic. It started with me being diagnosed with military neck then it worked it’s way down my body to my feet. I don’t know what I should do. Should I see a neurologist?
I checked for a "hypersensitive area downstairs" but my basement only has concrete walls and floor. Now what?
What if they freeze the tips of nerves on the bladder so that is not too sensitive?
one day i had a cystitis that just, never went away, things flared up pretty majorly recently, im honestly unsure of what to do
What medication should I take to prevent theses symptoms?
Odd situation and question: My mother sat at a beach for a few hours and at the end of the dat I picked up some of the sand from the water and it smelled as if it was chemically treated and a few hours later she got a UTI. The UTI came back 3 times and she has been suffering from bladder pain now for about 3 months even though the UTI was treated. Could it be that the water caused irritation, recurring UTI and her current symptoms?
I have adenomyosis so I pee a lot which causes my bladder to feel like its on fire its a horrible feeling 😫
How do I contact you or do you know anyone good clinic for pelvic floor muscle rehabilitation in E15 area
I'm currently dealing with an issue that could be IC/BPS. I'm seeing a urologist at the moment and they barely are about to begin tests on me. Back in July I had a kidney stone which then caused a very terrible kidney infection and I passed the stone a long time ago but have had the symptoms of a kidney stone/UTI occur. My doctor thinks I have IC so that's why she sent me to the urologist. It's been very hard dealing with whatever it is I have, I can't say it is IC cuz I haven't gotten a doctor's diagnosis. I think it could be. Is it hereditary? My older sister has IC. Or maybe did the kidney stone cause it? I hear they can cause trauma to the urinary tract. So far my urologist has given me a medication that relaxes the bladder and it does help but I still have my days where the flare-ups is bad and the frequent bathroom trips are all day and all night. I've changed my diet and that has helped too but like I said it's not helped by 100% cuz I know IC has no cure. I just hope they can find out what's wrong with me and help me and whatever I have gets a cure for it someday. It's really terrible. Worst thing I've ever dealt with
I’ve suffered terribly since I was pregnant with my son 13 years ago. I had hypermesis (sorry if I’ve spelt it wrong) and was hospitalised with dehydration which resulted in urine infections. I’ve never fully recovered.
Hi Jilly, I’ve had interstitial cystitis for 21 years and have any avoided sexual sensations and even the moola bandha in yoga as I have intense pain starting an hour after and lasting 24 hours. Are there any treatments or practices I can do to prevent this? I’d be so grateful for your advice. Thank you! 🙏💜
Is it normal to have a little bit of blood or a little blood clots
Omg, do you have an email to which I can contact you through?
This is definitely a good approach, but it is not a holistic approach. The mental and the physical function of the tissue are two important facets and for some patients the answer, but if you don't look at diet, hormones, the gut, the immune system, the flora, chronic infections, the sexual partner, etc. then you will only go so far in healing BPS patients. These techniques may reduce pain scores, but most of us want to go back to zero pain.
I totally agree :) I'm limited by my scope of practice.
Nice clarification. Can you please link to your video on embedded infections?
It's coming! Will be uploaded soon.
Can this be treated in pregnancy
I have pelvic pain every day I'm tired 😴 of it
Do you get pain in kidneys with interstitial cystitis,and white blood cells.in urine?
Madam, i have bladder problem no diet issue, also gone for ct, urine culture but there is no inflammation of bladder no infection,
My main symptoms are bladder pressure with frequent urination no burning but there is pain some time if do go wash room and hold urine though the amount of urine is very poor
Is it ic? , and if it is which type of
You have to go to a urologist who's knowledgeable regarding IC for testing, if you're a male with possible IC.
If you're a female with possible IC, it's best to see a Uro-GYN who's knowledgeable regarding IC, for IC testing.
For those who have no problems with water retention or high blood pressure, often taking baking soda (sodium bicarbonate) in water can help. Start with 1/2 teaspoon in water to see if that helps. It alkalinizes the urine.
Do you mind sharing the resources you learnt about this please?
@@lutrellee1457 I don't remember, it's been SO long ago. It was a book I read years ago, before I was even diagnosed. However, if you Google "baking soda in water for interstitial Cystitis" you'll get a lot of information. Again, don't use this remedy if you have high blood pressure or have baking soda in water for interstitial Cystitis".
(Again, if you have problems with high blood pressure or water retention don't use this remedy)
@@fcllc4217 Okay thanks anyway 😊 I’ll do some research about it online
@@fcllc4217 i have low blood pressure ,so I think I will try baking soda
@@SRBOMBONICA86 That's the first thing I tried for IC and it was really great. It took away the pain and discomfort very quickly. I hope it works for you as well! Also, if you just can't stand the taste in water, you can mix it in with soda pop, or fruit juice and it doesn't taste too bad.
I never had an infection that I know of, I can still behaving this condition? it worsen over past three years. I also think I never fully empty.
A Urologist diagnoses via a diagnostic surgery called cystoscopy with hydrodistention. Also, a piece of your bladder's tissue is taken and tested for cancer, too. The procedure looks inside your bladder for bladder glomerulations and what's called Hunner's ulcers. The hydrodistention measures the bladder's capacity as one of the side effects of IC is bladder shrinkage. The end stages are bladder removal due to decreased lack of capacity. Some IC patients have reported their capacity reduced to 3 oz. of fluid.
@@michealcollins5650 ugh. Blocked.
@@michealcollins5650 Dear Micheal, Thank you very much. Unfortunately, I still don't not know what is my problem. I did aerodynamic test, they told me it's not good but the urologist said he don't know how to help me. The third urologist I saw sent me to three tests I'm now waiting to do. Not sure it's Cystitis/Bladder Pain Syndrome. It can be panful, but it's basically the urge to get empty tens of times during the day and 1-4 times at night. I feel it nerves connected.
@@unoonu9043 I don't understand
@@mornov379 okay message dr.tim,he could be able to help you and know what your problem is.
Jilly. This is exactly the confirmation I have been trying to find for many months now. I have made my non-doctor diagnosis of my lover's 4 year pains and came to a half conclusion of it being IC/BPS. She is unable to get the help she needs under the Spainish healthcare system. Would you be able to make yourself availble to be help calm her? It is getting to a point where she doesn't even feel alive. Please let me know if there are means to contact you in regards to this.
Oh my, I hope that she gets the care that she needs.
Please help! My daughter has been on Cephalexin for over a year. I don't think she has bladder infections. They don't even test her urine every time they refill this prescription. She has symptoms like UTI or bladder infection she also has painful sex. She is pregnant and everything is being exacerbated.
I feel her pain I'm in the same boat I'm 12 weeks pregnant and in constant pain xx
I’m in the same boat ! Terrible 😞! Just not pregnant
How do you treat the pelvic floor area ?
Try changing her diet. Cut out caffeine, coffee, alcohol, spicy foods. Your daughter should not take antibiotics without a true identified infection. So sorry to hear this, I completely understand as a woman. Doctors just throw antibiotics at us.
I I have IBS which trigger this condition which show up on a blood the hospital told my doctor to send me to Urologists which the completely ignored so what did they do they give me peppermint oil pills
I am now thinking going private
I have lost total faith now in the NHS my doctors have done nothing what has peppermint pills for to did with the bladder isa last resort so be it
everytime i sit my left bladder is painful but not really painful. just mild
You only have one bladder. Do you mean your left kidney area is painful?
When I sit to my bladder feels tight or swollen
I've noticed my pelvic floor tighten/lift when passing a bowel movement and also when ejaculating.
Then the area near the perineum and further up gets tight/painful and I have to urinate because of the pressure and pain.
Urinating is difficult and I don't feel my sphincter relaxes.
It's quite life altering these symptoms.
Any idea what this could be and how to treat it?
Thanks
Lots :) This is exactly the thing a pelvic health physio could help you with. It's difficult to discuss over the internet- everyone's different and we can't treat without doing a full assessment. I'd suggest getting yourself fully checked out & find a pelvic health physio to work with you on these issues. All the best.
@@jillybond1502
Thank you Jilly.
I'm 31 years old and have had this since I was around 15/16.
I do believe it is CPPS or possibly a stricture.
I have seen a physiotherapist on the NHS but unfortunately wasn't too impressed.
I'm based in London so will look for a reputable physio ideally dealing with men or at least experienced with Male pelvic pain.
Thanks
@@behzg3677 I highly recommend Karl Monahan in Islington www.thepelvicpainclinic.co.uk/
Like Jilly has already stated, get all checked out by a urologist if you have not already done so. If there is no infection or blockage, you probably got an issue with muscle tension down there. There is a guy on here with videos who really helped me out, I'll pass the info along if you want. I've been through the grind with this and finally recovering. Hit me back and will talk more if you want. To Jilly Bond - not trying to hijack your video, I respect what you are doing but being a man with this can be scary and I'm just trying to help, hope you understand.
I feel dull pain and pressure or cramping in bladder or uterus and anal at the same time. Almost like period cramps i think but i feel in my bladder as well and anal region. Its weird but it occurs at times and today it lasted longer and was more intense. It feels like my rectum is going to come out turning inside out. Pain is not very severe however it feels like will end up serious or more painful as there is pressure increasing sort of feeling so moving at all becomes difficult. Sorry for being so descriptive but if anyone knows what it is please lemme know.
I have a same symptoms and feel like passing out stools at that mins
I'm a man and I feel the same pain like a tightness underneath feel swollen sometimes it comes and goes more than others freaking urination I have had microscopic hematuria for a while
How does it feel that the tightness swollen how does it feel thanks
Could be hemmroids internal I had this
is this the same as chronic bladder infections ?
No. Interstitial Cystitis characterizes itself for the lack of bacteria in the urine which means there is not infection found. Zero infection. Full blown inflammation 24/ 7 365. Thus many get the diagnosis of PFD Pelvic Floor Dysfunction, too.
Interstitial cystitis= chronic bladder infection - bacteria.
@@shrutikhanna8798 nope. IC is one of those weird Cystitis where bacteria is nit always a common denominator. Thus it gets the 'autoimmune dis-ease' adjective.
@@shrutikhanna8798 No infection.
I had surgery in July for a vaginal polyp via my vagina. When Dr did op he found my bladder was stuck to my ovary and he fixed it. Since then I feel terrible pressure and pain. Intercourse is a nightmare. Could the operation been my trauma down there. I'm really sore all time. Dr checked and said everything is normal and healed.
MY BLADDER IS IRRITATED RIGH WHERE THE URETHRA CONNECTS WITH THE BLADDER CAUSING ME CONSTANT URINATION BECAUSE ALL THE URINE DROPS THERE . AS A RESULT I GO TO THE RESTROOM FOR EVERY 1 OZ OF URINE
You are so cute
And BTW symptoms are reversible. Read the Autoinmune solution by Dr Amy Myers. Good luck y’all
There isn't a simple solution when it comes to IC. Do you have IC? If so, has it ever gotten so bad that you've discussed having your bladder removed with your physician? There are actual ULCERS that are eating away at the lining of the bladder. There isn't a simple solution that can resolve IC, or the relentless pain so many people experience.
Imagine you have a fresh gaping wound and someone comes along and pours salt into that wound, or alcohol, or lemon juice, and then constantly grinds more salt (or alcohol, or lemon juice) into that wound. Unless you've had severe IC flares, it's impossible to understand the pain people experience with IC.
To put this in perspective,
I was in an accident where I was hit twice, in the same accident, by an 18-wheeler. It required 3 mos in the hospital and 2 years additional treatment before I had recovered significantly. Unfortunately, after I recovered, I was in a cycling accident where I fractured several vertebrae. Again, 3+ mos in hospital, a long recovery, and permanent disability with severe pain. I suffer with numerous chronic pain issues but, of all the issues I have, IC is easily the worst because it's so unrelenting. It's something one simply cannot understand unless they've suffered severe IC flares.
I have burning sensation in my vagina.and often feel like urinating.
But i have no pain durning urinating
Is it interstitial cystitis? And when i got urine culture it shows that i have
enterococcus faecalis bacteria in very small amount i have taken lot of antibiotics but it didn't work
how are you now? what did you do?
@@mylenebaldoza6160 i have recurrent uti..so my uti keep coming back..and it didn’t heal.. I still have uti since then
do you still feel to urinate frequently?
@@mylenebaldoza6160 yes
I have the same also but this time my symptoms of UTI is worst
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI AND FIBROMYALGIA, I TOOK THE MEDICATION FOR 21 DAYS🙏🏻🙏🏻 I WILL FOREVER BE GRATEFUL TO DOCTOR ISIBOR
Can You please share what treatment was that?
I recommend Doctor Isibor Alternative Herbal supplement on youtube best treatment for cystitis ✅.
you talking gibbarsih >>>
Yes, you're just creating all the pain in your head.....smdh
everytime i sit my left bladder is painful but not really painful. just mild
I was diagnosed with Interstitial cystitis in 2018 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum this herbalist through his email and he prepared me a herbal cure for Interstitial cystitis and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this disease within 5 months of use, I am now Interstitial cystitis free, all thanks to Dr. Timothy You can also contact this great herbalist for help by email: timothydouglas3612@gmail.com or contact Dr. Timothy through his whatsapp number: +1(239) 977-4390 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you
@@michealcollins5650 the whatsapp does not work