What's the difference between Interstitial Cystitis and Bladder Pain Syndrome?

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  • เผยแพร่เมื่อ 4 มิ.ย. 2024
  • Been diagnosed with IC or BPS? Want to know what the difference is?
    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.

ความคิดเห็น • 206

  • @nikkiplaysbeatstar
    @nikkiplaysbeatstar 4 ปีที่แล้ว +42

    Hello, interstitial cystitis patient here. I think its worth mentioning the confusion around Hunners lesions (Ulcers) and IC. As far as I know, most countries agree that findings of Hunners Ulcers are significant to IC, are found in roughly 5-10% of patients, and are an asbsolute indicator of IC subtype 1 (one of 2 only agreed upon subtypes) Hunners Lesions or Ulcers. From what I know, the common diagnosis differential, is the condition of the bladder wall. Example, normal bladder wall- BPS, bleeding or ulcers- IC. I am in complete agreement that pain can vary by its source and how it manifests, but I think its questionable to say that pinpoint bleeding (glomerulations) or ulcers show up randomly and asymptomatically in average people, in comparison to slipped disks. Hunners Ulcers and those with bladder injury are likely the patients with the most significant pain, and patients with lesions need lesion specific therapy (such as lesion cauterization, steroid injection, fulguration). I appreciate the mentioning of IC/PBS affecting more than just the bladder, including the pelvic muscles, because that is absolutely true. However, as someone who's life has been dramatically affected by this condition, calling it a "bladder pain syndrome" seems injustified to me, and is nearly insulting when my bladder looks like minced ground beef, less than half its normal capacity, is covered with scar tissue, and no longer functions properly. If bladder pain was my main or only factor, it would be a completely different story but for me this is a lifestyle condition. One that prevents me from working, sleeping, eating, excersing, maintaining mental health, relationships, etc. This condition has robbed me of my normal life since I was a child, and my entire experience would feel devalued if I had to refer to it as a syndrome. However this is my own personal experience, and each individual is unique. With that being said, thank you for sharing your thoughts on this topic, a lot of IC videos on TH-cam can be cold in nature, and this was really personable and easy to follow.

    • @mahnazmalik5817
      @mahnazmalik5817 3 ปีที่แล้ว

      Mmm n

    • @leahmpalzer
      @leahmpalzer 3 ปีที่แล้ว +3

      Yes! I feel the same!

    • @zoezzzarko1117
      @zoezzzarko1117 2 ปีที่แล้ว

      How are you doing now?

    • @aprilsmith8924
      @aprilsmith8924 2 ปีที่แล้ว +1

      Infection. They let infection go wild on your bladder and just throw crappy meds at you.

    • @pacipano5014
      @pacipano5014 2 ปีที่แล้ว +3

      There's an eBook talking about the psychological element of it. To me it did a great deal of good, it's called Bits & pieces you might've missed about your interstitial cystitis, by J King. It's life-changing for me. It's something like when a person is turned against oneself, the autoimmune system goes against own body. And it goes very very deep, tho very succinct, with solutions and everything, really cool. Hope it helps.

  • @alieren3321
    @alieren3321 ปีที่แล้ว +3

    My wife had bladder fulguration for leukoplakia Last year. Thanks God she is infection free after 10 years of suffering.

  • @ashleyk9328
    @ashleyk9328 3 ปีที่แล้ว +5

    Great video for those not suffering

  • @mangoyacho
    @mangoyacho 3 ปีที่แล้ว +1

    Wow - thank you for your excellent, easy to understand explanation. It has helped me a lot. Thank you!

  • @BHARATCHAUHAN-cr9zm
    @BHARATCHAUHAN-cr9zm 2 ปีที่แล้ว

    Thank you so much for the explanation , deeply appreciated.

  • @kate7932
    @kate7932 2 ปีที่แล้ว

    I always thought that! It makes much more sense to call it that way

  • @JanaWestMusic
    @JanaWestMusic 3 ปีที่แล้ว +8

    Jilly - I believe I have been experiencing BPS for at least 8 years. Until recently my symptoms have been misdiagnosed in some rather painful and further traumatizing ways, including a full hysterectomy. As you can no doubt imagine, this only amplified the cause of my symptoms. After doing my own research, I recently met with my primary care physician and she agreed that I had correctly identified the problem. Now I can begin to help and heal my body. Thank you so much for the information you are providing.

    • @michellevanburen1007
      @michellevanburen1007 3 ปีที่แล้ว

      Jana, I'm suffering terribly with menstrual type cramping, frequent urination and it's misery. My doc thinks it's IC...can't be related to female issues because I've had a full hysterctomy one year ago and have literally nothing left. Did you have pain like this?

    • @JanaWestMusic
      @JanaWestMusic 3 ปีที่แล้ว

      MICHELLE Van Buren - so sorry you are suffering. I had a full hysterectomy in 2016. My issues at this point are mainly bladder pain, pelvic floor, low back.

    • @JanaWestMusic
      @JanaWestMusic 3 ปีที่แล้ว

      MICHELLE Van Buren - I also found this video helpful. th-cam.com/video/GuqHvi9BOw8/w-d-xo.html

  • @jennifert-lewis9426
    @jennifert-lewis9426 4 ปีที่แล้ว +3

    Brill, as a physio myself this makes a lot of sense! Thanks Jilly

  • @tamaragarrett3625
    @tamaragarrett3625 4 ปีที่แล้ว +6

    I have had a cystoscopy for my bladder symptoms with no ulcers found therefore I’m told I don’t have IC. I’m thankful for this video because I have had chronic bladder pain symptoms for 10 yrs with no diagnosis. My symptoms are full heavy bladder frequency urgency lower back aches constantly vulva and urethral pain. I had a hysterectomy for adenomyosis and they thought it was causing my bladder symptoms. I will show this video to my Dr because you explained every thing I have. I’ve tried pelvic floor therapy but it didn’t help. I have a history of allergies, parapsoriosis, anxiety, depression, IBS and now I’m being told I might have fibro too. I also have thyroid nodules. No official diagnosis as if now, just symptoms according to my Drs.

    • @modernhomemaking1013
      @modernhomemaking1013 4 ปีที่แล้ว +1

      For IC or bladder pain, try avoiding foods on the "Interstitial Cystitis trigger foods list". For example, tomatoes, chili powder, coffee, tea, chocolate, lemon juice, oranges, citrus, almost anything spicy or very acidic, corn possibly. Try eating very calming and basic bland foods like lettuce, plain chicken, beans with no seasoning, herbs, water, apple juice.

    • @debrasalinas2831
      @debrasalinas2831 4 ปีที่แล้ว +3

      You sound like my twin to the T I have fibromyalgia and I have everything you have plus psoriatic arthritis.. hysterectomy only one ovary left ..

  • @janmorgan7435
    @janmorgan7435 3 ปีที่แล้ว +3

    I have wondered myself about IC /bladder pain. I have pressure, urgency and burning until passed urine. Don’t have pelvic pain. .
    Being treated with bladder instillations, Cystistat didn’t help much, but Ailure helped and didn’t need go to the toilet as much in the night.
    Sometimes feel exhausted with this bladder problem. Thank you for the video’s , which are very helpful.

    • @SoulSociety2021
      @SoulSociety2021 2 ปีที่แล้ว

      Heal cystitis (UTI) with bearberry (Uva Ursi)
      Antibacterial, bearberry is recommended to treat urinary tract infections.
      th-cam.com/video/znDILz7mInc/w-d-xo.html

  • @nanaprn7809
    @nanaprn7809 ปีที่แล้ว

    Great explanation!!

  • @sophiekelly3918
    @sophiekelly3918 2 ปีที่แล้ว +1

    Hi!I’ve recently been diagnosed with bladder pain syndrome and this video is so useful!!!
    I wish my physio would explain things like this to me,the lack of clarity and mixed messaging is ridiculous!
    Thankyou so much for this video❤️

    • @alexischarlotte4685
      @alexischarlotte4685 2 ปีที่แล้ว

      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

  • @yn9861
    @yn9861 4 ปีที่แล้ว +5

    I'm confused about microscopic hematuria and I have bladder pain without infection?

  • @amberharrison3624
    @amberharrison3624 4 ปีที่แล้ว +3

    Is urethral syndrome the same disease or a form of, from googling I’ve seen it’s an “old term” but there is no updated term ?

  • @ShatteredRippleBooks
    @ShatteredRippleBooks 3 ปีที่แล้ว +3

    Very helpful video I'm diagnosed with this and it's so painful and hard to cope with.

    • @mi3627
      @mi3627 3 ปีที่แล้ว

      No study joe dispenza :)

    • @SoulSociety2021
      @SoulSociety2021 2 ปีที่แล้ว

      Heal cystitis (UTI) with bearberry (Uva Ursi)
      Antibacterial, bearberry is recommended to treat urinary tract infections.
      th-cam.com/video/znDILz7mInc/w-d-xo.html

  • @papeetechild
    @papeetechild 2 ปีที่แล้ว

    I can’t find your video on embedded UTIs.

  • @netty5571
    @netty5571 3 ปีที่แล้ว

    Thank you

  • @Chars_Art_Minis
    @Chars_Art_Minis ปีที่แล้ว

    Would it still be IC if you have all the symptoms but without any frequency or urgency to urinate?

  • @fascistphilosophy5649
    @fascistphilosophy5649 4 ปีที่แล้ว +12

    I had a prolonged, untreated UTI from a girlfriend, literally went on 6 months (because I was living in a particular foreign country and didn't get proper treatment,) .. and ever since then, ~10 years, I have had this bladder pain syndrome. Flares feel like ulcers, as bad as needles, and can't sleep. Flares happen particularly if I start drinking alcohol again, and/or eat trashy junk foods. Prolonged fasting (one meal a day,) helps quickly. I also have a history of EXTREMELY, debilitating bad seasonal allergies, like hay fever, so I can believe it might be an auto-immune disorder at bottom.

    • @pigslefats
      @pigslefats 4 ปีที่แล้ว

      Avoid dairy for a week-see what happens. Drink soya or oatmilk

    • @jaderivette7675
      @jaderivette7675 2 ปีที่แล้ว

      UTIs are not contagious and not sexually transmitted.. were u saying u got it from a gf?

    • @fascistphilosophy5649
      @fascistphilosophy5649 2 ปีที่แล้ว +3

      @@jaderivette7675 yes, UTI's can be infectious and that is how I got mine (from gf). Unfortunately, living abroad in a certain country as I was, I could not get proper anti-biotics to treat it. Result: (I believe) auto-immune disorder of the bladder and frequent urination / painful bladder.

    • @aprilsmith8924
      @aprilsmith8924 2 ปีที่แล้ว

      Look up Dr Bundrick in Louisiana. He actually treats people with this.

    • @shikhasoni5518
      @shikhasoni5518 9 หลายเดือนก่อน

      U have started as having pain in bladder since u had a UTI?

  • @mayannalili8410
    @mayannalili8410 4 ปีที่แล้ว +2

    Thank you so much for posting this. I’m 19 and struggling

    • @jillybond1502
      @jillybond1502  4 ปีที่แล้ว +2

      Good luck with your recovery - it is achievable.

    • @modernhomemaking1013
      @modernhomemaking1013 4 ปีที่แล้ว +4

      For anyone struggling with IC or bladder pain, try avoiding foods on the "Interstitial Cystitis trigger foods list". For example, tomatoes, chili powder, coffee, tea, chocolate, lemon juice, oranges, citrus, almost anything spicy or very acidic, corn possibly. Try eating very calming and basic bland foods like lettuce, plain chicken, beans with no seasoning, herbs, water, apple juice.

    • @alcap6145
      @alcap6145 3 ปีที่แล้ว +1

      @@modernhomemaking1013 I love all those foods! No wonder I'm in pain!

    • @wendellwhyte4742
      @wendellwhyte4742 3 ปีที่แล้ว

      @@alcap6145 I'm going through it too and trying to research all that I can, I'll be doing an ultra sound scan .

    • @pacipano5014
      @pacipano5014 2 ปีที่แล้ว +1

      Don't lose hope. There's an eBook talking about the psychological element of it. To me it did a great deal of good, it's called Bits & pieces you might've missed about your interstitial cystitis, by J King. It's life-changing for me. It's something like when a person is turned against oneself, the autoimmune system goes against own body. And it goes very very deep, tho very succinct, with solutions and everything, really cool. Hope it helps.

  • @FitNatural
    @FitNatural ปีที่แล้ว +2

    What if the pain is really bad on waking with a full bladder (bent walking to the loo) but horrific upon emptying the bladder and then unbearable after emptying it? To the porn where you can’t straighten up it move from the toilet and then stay in pain significantly for a good period of time afterwards.

  • @alfia3644
    @alfia3644 ปีที่แล้ว

    Where can I read more on embedded infections??

  • @ann-or6ev
    @ann-or6ev 3 ปีที่แล้ว +3

    Does anyone else bleed a lot whilst having a flare up. I have been having first weekly, now, monthly Cystistat instillations to great effect, BUT Covid lockdowns cancelled my procedures for 3 months. I feel like I'm back at the start all over again. The spasms are like contractions and unbearable.

  • @mareenalewis4241
    @mareenalewis4241 3 ปีที่แล้ว +11

    I just had a cystoscopy today. I was amazed to see blood swirling around in my bladder. I also saw a pretty large patch of granulated tissue. The MD said "Oh, thats normal for females" 😑🤦‍♀️ No it is not! I am a nurse, and chronic blood in urine with an ulcerated patch on my bladder wall is not normal!

    • @Alix777.
      @Alix777. 3 ปีที่แล้ว

      www.ichelp.org/ic-diet-helped-me/ if it can help but maybe you know all of this.

    • @aprilsmith8924
      @aprilsmith8924 2 ปีที่แล้ว +4

      This is how many urologists are! That’s why it’s so hard to get treatment. Long term antibiotics (the right ones) or fulguration is key.

    • @aprilsmith8924
      @aprilsmith8924 2 ปีที่แล้ว

      Look up Dr Sevinc fulguration on TH-cam

    • @kate7932
      @kate7932 2 ปีที่แล้ว +9

      The truth is some doctors know less than us who suffer from this! Some are so ignorant

    • @pacipano5014
      @pacipano5014 2 ปีที่แล้ว +1

      There's an eBook talking about the psychological element of it. To me it did a great deal of good, it's called Bits & pieces you might've missed about your interstitial cystitis, by J King. It's life-changing for me. It's something like when a person is turned against oneself, the autoimmune system goes against own body. And it goes very very deep, tho very succinct, with solutions and everything, really cool. Hope it helps.

  • @CassidyBurnett7
    @CassidyBurnett7 4 ปีที่แล้ว +19

    I’ve been having lower abdominal pain and urethral pain for about a week now, went to the doctor thinking it was a UTI but results showed I don’t have an infection, came across this syndrome on google and it’s the exact same symptoms I’m having..

    • @Medieva1
      @Medieva1 3 ปีที่แล้ว +1

      any more news? how you been after 2 months

    • @ShatteredRippleBooks
      @ShatteredRippleBooks 3 ปีที่แล้ว

      @Cassidy Ames I'd recommend seeing a urologist if you haven't already. Thats what I did.

    • @armin-senpai9194
      @armin-senpai9194 2 ปีที่แล้ว +1

      Hope things are better after a year

    • @CassidyBurnett7
      @CassidyBurnett7 2 ปีที่แล้ว +1

      @@Medieva1 much better now! Seemed to resolve on its own

    • @kristenhenderson8143
      @kristenhenderson8143 2 ปีที่แล้ว +2

      ​@@CassidyBurnett7 well ur very lucky it went away cuz ive been going threw hell for over 10 years

  • @modernhomemaking1013
    @modernhomemaking1013 4 ปีที่แล้ว +14

    For anyone struggling with IC or bladder pain, try avoiding foods on the "Interstitial Cystitis trigger foods list". For example, tomatoes, chili powder, coffee, tea, chocolate, lemon juice, oranges, citrus, almost anything spicy or very acidic, corn possibly. Try eating very calming and basic bland foods like lettuce, plain chicken, beans with no seasoning, herbs, water, apple juice.

    • @Ellie-yx8ni
      @Ellie-yx8ni 3 ปีที่แล้ว +3

      All those foods aren't necessarily triggers for everyone. If you do an elimination diet and eliminate just one thing for a week or two and so on, you can see what foods are an issue for you particularly rather than eliminating a whole swath and not knowing which ones could have been ok for you. For me, caffeine was the only trigger. Once I got rid of that I felt intense relief. My doc said at some point other foods may become an issue and if that happens, I can do an elimination diet again to figure it out.

    • @joanna0988
      @joanna0988 7 หลายเดือนก่อน

      ​@@Ellie-yx8niHow long did it take to see a change after quitting caffeine? Thanks!

    • @Ellie-yx8ni
      @Ellie-yx8ni 6 หลายเดือนก่อน

      It was immediate. I went cold turkey on all caffeine for quite a while (many months) then tried adding a little back to see how I tolerate it. I have a cup or two of tea a day and a single cup of coffee most weekend mornings but if I stray as I did on a road trip recently having several cups of coffee on the road, I felt pain again.

  • @natashatheel4865
    @natashatheel4865 9 หลายเดือนก่อน +3

    Mine gets worse after I pee, anyone else find this?

  • @nancydial5156
    @nancydial5156 2 ปีที่แล้ว

    You're describing how I have felt for 6 months

  • @tiffanyhenderson853
    @tiffanyhenderson853 11 หลายเดือนก่อน

    Thank you for stating all the different types of pain in joints and muscles. I don't get uti just severe bladder pain and no matter, no matter what I eat is pain. I'm still confused on PBS. I still feel like PBS is best to describe IC; which is more talk on learning this disease 23yrs ago. My entire pelvic hurts bc over 9 laparoscopies for endometriosis so pelvic day. I just some normalcy again with not pain PERIOD.....

    • @shikhasoni5518
      @shikhasoni5518 9 หลายเดือนก่อน

      DOES ic bladder pain shown in ultrasound??

  • @Ida-Adriana
    @Ida-Adriana 4 ปีที่แล้ว +6

    Did you read the studies about low estrogen being related to pelvic floor dysfunction?

  • @kanugarg2745
    @kanugarg2745 ปีที่แล้ว

    Jilly, can someone have ic as well as pudendal neuralgia? I have ic symptoms from last 10 months but from last 2 months my right side pelvic area hurts a lot.. while walking I need to keep my right leg apart.. while sitting after sometime I need to keep a pillow on right side...plz help🙏I have ic symptoms like pain urgency... bladder tenderness... bladder instillations are not helping I had 4 instillations..

  • @keelynelson4680
    @keelynelson4680 2 ปีที่แล้ว

    Is this video shareable?

  • @robinanneluciahachadoorian4614
    @robinanneluciahachadoorian4614 4 หลายเดือนก่อน

    I have IC or Bladder pain syndrome for over 30 years - in the US and ONLINE both terms are still used. I have 20 symptoms o PAIN. i have MASSIVE AMOUNTS OF PINPOINT HEMORRAGES AND AN OVER AMOUNT OF( HISTAMINES) OR MAST CELLS NO INSTILLATIONS HELPED. Early on I became allergic to antibiotics and with time allergic to many MANY other things.(even myself) - many women in my family have also been diagnosed with this. IC I have stomach trouble as well. CURRENTLY I have found varied antihistamines help. I just read about MAST CELL ACTIVATION SYNDROME what do you think about this?

  • @mishaokane
    @mishaokane ปีที่แล้ว

    I’m not sure if this is either or of this but I’m been dealing with this since I was small anytime my feet get cold or touch the cold ground I get sore and then need to pee and I’m sore after I pee for ages … I haven’t been to doctor yet but I have no idea what this is.
    I can’t find anywhere stating the feet having an effect on the bladder or urethra I should say as that’s where the pain truly is along with my feet .

  • @pruthap4363
    @pruthap4363 2 ปีที่แล้ว +4

    I just wanted to know if IC can cause presssure and pain around my pelvic region. Anywhere I press around my pelvis I feel pain and pressure especially in my he mornings after a bowel movement. It subsides slightly after late afternoon sometimes but I am mostly in pain.

    • @sailormoon6240
      @sailormoon6240 ปีที่แล้ว

      Hey I have the same thing . What was your diagnosis

  • @stephanielafferty7078
    @stephanielafferty7078 3 หลายเดือนก่อน +1

    Is there any way to diagnose this other than a cystoscopy? I have bladder pain and urgency but I’m scared to have a cystoscopy- I don’t want to make this worse. No infection, no blood, no bacteria or protein, no idea what the hell this is. Sonogram was normal. Seeing another urologist Friday. I welcome thoughts or suggestions on diagnosis. I’m petrified it’s cancer- but worried about the cystoscopy. Thank you

  • @robinanneluciahachadoorian4614
    @robinanneluciahachadoorian4614 4 หลายเดือนก่อน

    i can UNDERSTAND the 2 classifications if one has all the markers as I do what should it be called? I think IC is a pertinent term for me. Bladder Pain Syndrome is a description for what I FEEL. but perhaps 2 general for the pathology

  • @marie-theresehayes6875
    @marie-theresehayes6875 4 หลายเดือนก่อน

    Can you have intermittent bladderpain syndrome? Ive had 3 episodes but spaced about 18 months apart. All cystoscopy have been clear and no infection detected in urine samples. Feel really urge to pee but can go for hours without going. Was discharged from urology clinic with no definitive diagnosis

  • @kimkl1
    @kimkl1 8 หลายเดือนก่อน

    so ihave too pee every 10 min and i have bladder pain when i hold what can i do im going crazy its been a year now doctors dont know what to do or what it is?

  • @rajwvilla
    @rajwvilla 3 หลายเดือนก่อน

    I have undiagnosed bladder pain. I’ve had it for 3 years every day. Just constant pain like an inflammation or swollen type pain. It’s worse before urination and after. It’s uncomfortable when I lie down in bed and cannot lie on my ftront. I’ve had a scan and prostate check and all seemed okay but it hasn’t took away the problem. It gets me down. I’m a middle aged male.

  • @TE-7302-
    @TE-7302- 7 หลายเดือนก่อน +1

    Worse at night while laying in bed? Also found tapering off of a benzodiazepine caused BPS to either rage or worsen.

  • @rayneb2762
    @rayneb2762 ปีที่แล้ว

    I have ic and I have extreme pain constantly, it’s like a uti 20 times more painful. I have extreme pain all over my pelvis and hips, it’s really a debilitating condition.

  • @roxanarox8115
    @roxanarox8115 3 ปีที่แล้ว +2

    Hi...good explanation. I have pain in my perineal region right side only.sometimes these pain moving to vaigainal like a pulling pain if I drink 4ltr of water and bladder relaxant these burning pain moving from vaigaina but still arounding perineal region... my body feels very heat nd achy....its been 5months..I saw may docs..but nothing helpful...

    • @SoulSociety2021
      @SoulSociety2021 2 ปีที่แล้ว

      Heal cystitis (UTI) with bearberry (Uva Ursi)
      Antibacterial, bearberry is recommended to treat urinary tract infections.
      th-cam.com/video/znDILz7mInc/w-d-xo.html

  • @cbd4734
    @cbd4734 ปีที่แล้ว +2

    Does the pain always have to come when the bladder fills up? Mine is a constant pain in my hip area...doesn't seem to matter if I have an empty or full bladder. I recently had an event where my bladder became inflamed and it hurt on both hips. But the inflammation has since gone away (according to a cystoscopy) , but pain on my left side remains.

    • @user-wd3po8sd7k
      @user-wd3po8sd7k ปีที่แล้ว

      Do you have kidney stones? High oxalate can also cause problems. I have chronic UTIs,kidney stones, kidney cysts and calcifications on the kidneys. I struggle with constant urgency and pressure. I also have ache on my left side and my kidney flank area at times. Many of my problems at the moment stem from kidney stones. Prior to this, I had a chronic E. coli infection in my bladder and it was eradicated with months of antibiotic.
      I hope you feel better soon and can get to the root cause of your issue.

  • @Homeschoolmama3
    @Homeschoolmama3 4 หลายเดือนก่อน

    Hi I had kidney stones with all 3 my pregnancy 2 were blasted with wave machine and the other one was scooped out I had stents placed in with all three got them removed as well since my last one that was scooped out at times I get a sharp pain in my peephole area takes my breath away have stop then goes away. I haven’t gone Dr just can’t afford the medical bills. Wondering if anyone else experienced this that’s my only symptom.

  • @NowWhat480
    @NowWhat480 4 ปีที่แล้ว +3

    I have been to numerous Dr's here in the US, and the only Dr's here that even know anything about IC are urologists. When I try to tell pain management they have no idea what im going through, nor does my general practitioner. It's so frustrating.

    • @amritpokharel3171
      @amritpokharel3171 2 ปีที่แล้ว

      I agree. Can you share your story?

    • @charmainehutchinson7281
      @charmainehutchinson7281 ปีที่แล้ว

      This is go real my husband be a lot of pain anf I don’t even understand Whst he is dealing with so I’m looking for answers

  • @estellaarizola2460
    @estellaarizola2460 23 วันที่ผ่านมา

    I have had this. I'll be a good 12 years. I have had a total of 11 procedures done within the last 5 bears. Cause they could not diagnose what was going on with me. I have very bad chronic pain.
    I have had one hunter legion found. In fact, I just had a procedure done on Wednesday again.
    Again, it's like every 6 months. I'm having to do this because it starts getting unbearable. Lot of pain can even walk.

  • @tommac21
    @tommac21 22 วันที่ผ่านมา

    I would ask a Dr.

  • @n0tofthisw0rld
    @n0tofthisw0rld 3 ปีที่แล้ว +8

    Going through a flare right now. Started almost 24 hours ago. Lower stomach, vaginal. Ice pack wrapped in towel between my legs and heating pad on my lower stomach helps like nothing else!
    Triggers for me: chocolate, coffee, tea, and the newest is apparently blackberry cobbler?? 🤔 😭😭 tomato based foods..

    • @puny5417
      @puny5417 3 ปีที่แล้ว +2

      Thanks for sharing. ☺️☺️ I’m
      Sorry about your flare up. Praying your finding relief. I have had two major flare ups. New to this. Visited ER twice. It’s horrible.

    • @judithhopes151
      @judithhopes151 3 ปีที่แล้ว +3

      Low doses of amitryptilline, works, quickly, I had this for 23yrs before proper diagnosis, in 12 hrs immediate relief. My chronic bladderpain was associated with fibromyalgia. Amitryptilline was prescribed for fibro, did not realise bladder pain was associated symptom, Still have fibro , but bladder pain kicked into long grass.

    • @bboydee99
      @bboydee99 3 ปีที่แล้ว

      check Dr Sevinc at the Liv Hospital Ulus Istanbul & his Instagram is @drcuneydsevinc the only doctor in the world who repairs bladder tissue.

    • @ai-no-unmei
      @ai-no-unmei 2 ปีที่แล้ว

      Oh wauw, I wish I knew my triggers (know a few) but especially remedies. I know warmth helps but you cant sit in a warm bath during work can you ? :'(

    • @armin-senpai9194
      @armin-senpai9194 2 ปีที่แล้ว

      soda triggers it for me and processed spicy food

  • @mulattaha449
    @mulattaha449 2 ปีที่แล้ว

    I am suffering from cystitis for the four years and half, but still looking for the right treatment. Any advice please?

    • @tamarastreeter1633
      @tamarastreeter1633 ปีที่แล้ว

      3 years here! Have you came across anything that has helped ?

  • @bluefairyuk
    @bluefairyuk 3 ปีที่แล้ว

    I have been having smelly urine for nearly 4 months; But no pains. Taken antibiotics but the smell did not go away and a urine test showed e-coli infection. I do not wish to take more antibiotics so I am wondering whether taking D-Mannose will help me?

    • @JosieStev
      @JosieStev 3 ปีที่แล้ว

      Are you still having strong odor?

    • @SoulSociety2021
      @SoulSociety2021 2 ปีที่แล้ว

      As a dietary supplement, D-mannose is often touted as a natural way to treat and prevent a urinary tract infection (UTI) or bladder infection (cystitis). Though more research is needed, preliminary studies suggest that the supplement could be well worth exploring.
      Heal cystitis (UTI) with bearberry (Uva Ursi)
      Antibacterial, bearberry is recommended to treat urinary tract infections.
      th-cam.com/video/znDILz7mInc/w-d-xo.html

    • @francine6567
      @francine6567 ปีที่แล้ว

      Hey, did the infection heal? how are you now?

  • @invisibleillnesswarrior5907
    @invisibleillnesswarrior5907 4 ปีที่แล้ว +6

    I had a UTI a few weeks ago and took a couple of courses of antibiotics but still haven't been the same . Sore tummy pelvic pressure and back pain. Hard to urinate.

    • @1222forever
      @1222forever 4 ปีที่แล้ว +1

      Nicolle Anne me too!!

    • @angeladaly2510
      @angeladaly2510 3 ปีที่แล้ว +2

      Me 2

    • @thelaundryman9287
      @thelaundryman9287 3 ปีที่แล้ว +2

      Male here. I was in the same situation. The hard to urinate part went away after a few days to a week. But the sore tummy / pressure comes back from time to time.

    • @SRBOMBONICA86
      @SRBOMBONICA86 3 ปีที่แล้ว +1

      Me too ,I plan to go see an urologist soon

    • @SRBOMBONICA86
      @SRBOMBONICA86 3 ปีที่แล้ว

      @@thelaundryman9287 my bladder feels sore not tummy

  • @keelynelson4680
    @keelynelson4680 2 ปีที่แล้ว

    I had no idea

  • @natashacolcombe2679
    @natashacolcombe2679 ปีที่แล้ว

    I have IC and just had my first bladder installation a couple of days ago. I have terrible pain, and I feel like I need to wee all the time. I wee loads, the amount depends on how much I drink, but I could pee for England lol! I also have some other issues that I've had way before being diagnosed with IC and before things got really bad. My pelvic floor muscles are way too tight. I had some physio to learn how to relax them enough to wee, but I can't use pessaries or have smear tests. It's been like this for over 10 years now. I bought vaginally stretchers, but they're so painful. I have a connective tissue disorder called EDS hypermobile type. They know I have an autoimmune disease, but I'm not sure which, but I have all the symptoms of sjogrens. I get terrible pain in my coccyx/si region, so I thought maybe my coccyx was dislocated, and that was causing the tight pelvic floor muscles, but now I'm thinking maybe vulvodynia as well as IC? I don't know, but I want the horrific pain to stop.

    • @chrissiewissy
      @chrissiewissy ปีที่แล้ว

      Go vegan. Get the book by Kris Carr called Crazy sexy diet. It is definitely helping me and I’ve tried everything. I drink a litre of organic celery juice a day and the pain goes away. It’s about alkalising your body.

  • @shileenmckernanpidgeon7682
    @shileenmckernanpidgeon7682 ปีที่แล้ว +1

    I feel like I permanently need to pee, have had many many bladder instillations & still my discomfort continues. I had a cystoscopy & was diagnosed with "mild interstitial cystitis" I'm at my wit's end !!

    • @francine6567
      @francine6567 ปีที่แล้ว +1

      did yours start with uti by any chance? how are you now? I got the same symptoms but also constant burning, hate it. I am looking into proper microscopy / pcr / microgen testing as cultures come back clear sometimes. I hear many docs are just ignoring women saying we have this mysterious IC but really its an ongoing/chronic/undiagnosed UTI.

  • @yarbie35
    @yarbie35 3 หลายเดือนก่อน

    I've had ic for over 20 years and now have nothing but Kratom for pain. I'm suicidal for having this and scared I will do something very stupid

  • @caramellohoney
    @caramellohoney 2 ปีที่แล้ว

    Hi all I don’t know wth is going on with me. Just in the last day or two I’ve been feeling strange constant on and off tingling near my bladder. Very low down. It’s like I have a heart beating in my bladder or some constant running stream it is annoying and only now and then I will get some sharp ticklish pain there along with pressure. 2 weeks ago got uti check all clear. Sorry about the personal details but got pap and it hurt like hec. Doc mentions maybe some bacteria inside hence why the pap hurt me. I went home after pap and for 2 days I just felt constant cramping and pressure near my bladder it gradually went away. Now I’ve got the above tingling feels likes it not going away and only does for a few secs, realised the comfort I get is by shaking my legs slightly whilst laying in bed so I can’t feel it 🥺 annoyed much has anyone experienced this??

    • @Chahlie
      @Chahlie 2 ปีที่แล้ว

      I've been having a similar sort of thing, really hard to describe- at first I thought it was a hernia. It's like there is a fish hook attached to my belly button pulling intermittently in different directions. For a week I had shooting pains down both sides of groin in the creases, and a very full heavy feeling above pubic bone. And terrible indigestion and a gnawing hunger type pain. Just bizarre. Taking Claritin has helped somewhat and I've been using Mastica ( the real gum- so expensive!) in case it's a tummy ulcer. Very annoying. Worst was feeling freezing cold, nausea and a weird headache. Almost wonder if it's a weird type of covid.

  • @marshadeichmiller1763
    @marshadeichmiller1763 2 ปีที่แล้ว +1

    I'm dealing with Covid 19 that has increased my bladder pain to a much more pain level and if there's anything that can be done to help

    • @veruschkamunilall1595
      @veruschkamunilall1595 2 ปีที่แล้ว +1

      Oh my God I thought I was the only one. My bladder problems just got magnified after covid.

    • @jarlelisif9932
      @jarlelisif9932 ปีที่แล้ว

      My bladder started to hurt a week after I got Covid. My urologist says it is interstitial cystitis. I now suddenly have to double void and avoid spicy foods and have a burning pain in my bladder. Have you recovered from your flare as yet?

  • @sspur2034
    @sspur2034 3 ปีที่แล้ว

    does using a vibrator affect having ICS?

    • @Chahlie
      @Chahlie 2 ปีที่แล้ว

      Good Lord, with what I am going through I wouldn't even consider putting such a thing near my urethra!

    • @sspur2034
      @sspur2034 2 ปีที่แล้ว +1

      @@Chahlie I'm not talking about my urethra, heather. I'm male and I'm not straight. None of my aunts use or own a computer, so here I am. If you saw my partner you'd know this wasn't my question, but thanks for your input.

  • @asadmehboob1300
    @asadmehboob1300 4 ปีที่แล้ว +1

    hy respected Jilly Bond ..i have mild bladder pain(come and go. mostly pain when urine in bladder) and pain and burning in scrotum veins(get some relief after emptying bladder )...when i exercise to strong bladder then my bladder hurts..if i sit and not go to urine burning pain started in bladder..sometime i have feel pain beneath the thighs..(veins). When i wake up in morning ..my bladder overactive..feel me it is extra full and send signal to brain that lots of pressure and pain there so i go to wash room ...normal urine comes and things go normal...i also trouble starting stream...feel blockages sometimes! please guide me..there is normal urine and ultrasound tests!
    some doctor give me antibiotics and some cranberry pills..its over six months..but problem not solved.it affects my quality of life..is it stress related problem or prostate or bladder problem! i feel happy if you answer me ..thank you

    • @Alix777.
      @Alix777. 4 ปีที่แล้ว

      I have the same. If the medical exams comes clear it's anxiety related. You need to accept the sensations and live your life, and of course working on your anxiety. It went away two times for me, but only because I was worried about something else.

    • @SRBOMBONICA86
      @SRBOMBONICA86 3 ปีที่แล้ว

      @@Alix777. i don't think it's only anxiety

  • @pnwtrailrunner5562
    @pnwtrailrunner5562 4 ปีที่แล้ว +4

    I'm not sure if I have this but I'm scared to go to a urinologyst because I know they will do a a cystoscopy. I have high anxiety dont know if I could go through the procedure and worried that it can be something much worse. If I do the procedure can it cause a flare up afterwards? Do I have to do a cystoscopy to be diagnosed? Are there other alternatives for a diagnosis? Thank you! Love the information btw very helpful!

    • @TheLeen333
      @TheLeen333 4 ปีที่แล้ว +4

      You do NOT have to have a cystoscopy. When I started with this I saw several urogyns and pelvic pain specialists and only one wanted to do that procedure. I chose not to.

    • @p.h.c.1113
      @p.h.c.1113 4 ปีที่แล้ว +4

      I had a cystoscopy 15 years ago or so, it was one of the worst procedures I ever had (I gave birth to twins without pain meds, so that gives you an idea...). The urologist did show me that I had some minor issues and wanted to take a biopsy while I was already there anyway. I decided not to do it, and the urologist was incredibly condescending to me. Looking back at it, I know I should have just gotten it done, but I just couldn't that day. Now I'm in my 50s and I think I need to address the issue again. Will look for a different urologist though...

    • @kynsley565
      @kynsley565 3 ปีที่แล้ว

      Petra C. I have to get this procedure done and I told them I will not do it awake I really pray they let me I have IC and hell I can’t even pee or use a tampon without being in a living hell yet alone a scope .... I just pray I don’t wake up in pain when it’s over or they decide to only put me partially to sleep and I can feel it all

    • @email4296
      @email4296 3 ปีที่แล้ว

      Hi Kynsley S. have you had the procedure done yet was it as awful as you thought? I'm worried too...

    • @mariafirenzi5559
      @mariafirenzi5559 3 ปีที่แล้ว +2

      It’s not that bad at all.

  • @louisap863
    @louisap863 2 ปีที่แล้ว

    If it walks like a duck, and quack likes one, trust me, it is one! IC is IC. 23 years on and diagnosed 4 years after first suffering, thankful for the biopsy and the straightforward label.........no need to call it anything else.

  • @adonisbleach4212
    @adonisbleach4212 3 ปีที่แล้ว

    Does marshmallow root tea helps???

    • @SoulSociety2021
      @SoulSociety2021 2 ปีที่แล้ว

      This is great for cystitis and gut inflammation, very soothing and reliieves bladder pain. Some believe that this same inflammation can be combated from the inside as well, as a result of marshmallow root tea benefits stemming from flavonoids found in the root.
      Heal cystitis (UTI) with bearberry (Uva Ursi)
      Antibacterial, bearberry is recommended to treat urinary tract infections.
      th-cam.com/video/znDILz7mInc/w-d-xo.html

  • @Brandi.65
    @Brandi.65 4 ปีที่แล้ว +2

    Will I have bladder spasms ,the rest of my life?

    • @JosieStev
      @JosieStev 3 ปีที่แล้ว

      There is a medication for bladder spasms

    • @SRBOMBONICA86
      @SRBOMBONICA86 3 ปีที่แล้ว

      @@JosieStev what is it called?

    • @JosieStev
      @JosieStev 3 ปีที่แล้ว

      @@SRBOMBONICA86
      There are many. Do an online search.
      drugs.com
      Uribel
      Myrbetriq
      VESIcare

    • @ikidzfaridabad3304
      @ikidzfaridabad3304 2 ปีที่แล้ว

      @@JosieStev plz tell me the medication?

    • @makayla5227
      @makayla5227 ปีที่แล้ว

      @@ikidzfaridabad3304 uribel

  • @ellasscraps7734
    @ellasscraps7734 3 ปีที่แล้ว +2

    I have had this for 10 years and l am at my witts end. When l have an out break l can’t pee and blood fills the bladder, which then turns into small blood clots which l have to pass before l can pee, it’s very painful. Can you talk about this. The doctors said there is no cure. I have been on antibiotics for 10 years.

    • @SRBOMBONICA86
      @SRBOMBONICA86 3 ปีที่แล้ว

      Have you tried UVA Ursi herb or marshmallow root ,or aloe vera capsules ???

    • @SoulSociety2021
      @SoulSociety2021 2 ปีที่แล้ว

      Heal cystitis (UTI) with bearberry
      Antibacterial, bearberry is recommended to treat urinary tract infections.
      th-cam.com/video/znDILz7mInc/w-d-xo.html

    • @kate7932
      @kate7932 2 ปีที่แล้ว

      Don’t take antibiotics if they don’t find a bacterial infection..

    • @Chahlie
      @Chahlie 2 ปีที่แล้ว

      Oh my heavens. I would also suggest Uva Ursi, and if that doesn't help marshmallow root or d mannose. Poor you, I just can only imagine :(

  • @alexischarlotte4685
    @alexischarlotte4685 2 ปีที่แล้ว

    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

  • @carlakniffen9100
    @carlakniffen9100 ปีที่แล้ว

    Nope......not clear at all for me.

  • @rowiemillar7321
    @rowiemillar7321 4 ปีที่แล้ว +2

    Bladder pain after a hysterectomy

    • @modernhomemaking1013
      @modernhomemaking1013 4 ปีที่แล้ว

      For anyone struggling with IC or bladder pain, try avoiding foods on the "Interstitial Cystitis trigger foods list". For example, tomatoes, chili powder, coffee, tea, chocolate, lemon juice, oranges, citrus, almost anything spicy or very acidic, corn possibly. Try eating very calming and basic bland foods like lettuce, plain chicken, beans with no seasoning, herbs, water, apple juice.

    • @TheJalebe73
      @TheJalebe73 3 ปีที่แล้ว

      Amira Gover same! It’s awful. Have you gotten any relief?

    • @TheJalebe73
      @TheJalebe73 3 ปีที่แล้ว

      Amira Gover thank you so much! I’ve been to a urologist and the only thing they’ve done is put me on Oxybutynin 😥

  • @Ida-Adriana
    @Ida-Adriana 4 ปีที่แล้ว +2

    I've also seen it called Overactive Bladder Syndrome 🙄

    • @tamaragarrett3625
      @tamaragarrett3625 4 ปีที่แล้ว

      Nvr Mnd I gad a Dr who tried to pull that bs on me. Gave overactive bladder meds that of course didn’t help because that’s not what it is. I have painful bladder syndrome. 🤬

  • @NT312
    @NT312 ปีที่แล้ว

    Thank you