Latest Blog Article: IC Diet Project - Fresh Blueberries Are In Season! Our Favorite Blueberry Love Recipes!
Results 1 to 13 of 13
  1. #1
    ICN Member
    Join Date
    May 2017
    Posts
    46

    Pain just before starting urination that dissapears after flow starts?

    Advertisement :
    Hi there ICers 😘

    Im still new to this IC diagnosis so i have a lot of questions to ask.

    Ok, so i have this pain which feels like it is at the neck of my bladder or the start of my urethra (the end of my urethra closest to my bladder).

    Anyways, when i go to urinate, when i can feel my urine is about to come down the urethra, i feel this awful almost severe pain at what i can only imagine to be the internal first urethral sphincter. Its not a stinging or burning pain, it is more a searing strong ache that lasts for a few seconds until my urine stream finally starts, to which the pain instantly dissapears. It causes me to automatically unintentionally hesitate to start my urine flow, so it takes me to or 3 goes to get my flow started (urinary hesitancy) My urine flow is awfully slow most of the time and it often abruptly stops multiple times mid stream.

    Does anyone else have this??
    I have had this since having a "bladder repair" in November 2015.

    I also have had urinary retention frequently since that surgery.

    I have constant bladder inflammation, and glomerulations on my cystoscopy/hydrodistenion .

    Is this uretheral sphincter pain im refering to related to IC or does this sound more like fowlers syndrome?

    Thanks so much in advance, Sam xx
    Diagnosed in early 2017 via cystoscopy and hydrodistenion - symptoms since 2003.

    Married - and have 3 beautiful daughters, currently 8, 6 and 2 as of 5th june 2017 .

    ***Treatments im currently on***
    -Pyridium
    -Prelief
    -Ural
    -Oxytrol transdermal patch (oxybutynin)
    -Ranitidine (h2 blocker) 300mg every day (has worked the best and halved my pain!)

    ***Things that didnt work***
    -Zyrtec
    -Buscopan
    -Hydrodistenion (sent me into a severe flare)
    -------------------------------------------------
    I am thankful for my struggle, because without it, I wouldn't have stumbled upon my strength.

  2. #2
    ICN Staff ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    41,442

    Re: Pain just before starting urination that dissapears after flow starts?

    I had a problem urinating after I had surgery to correct a stress incontinence problem, but it didn't last more than a month or so. Have you tried any of the medications that help relax the bladder muscles so it's easier to urinate? The ones I think of are hytrin, Flomax, and Cardura.

    I hope this problem eases for you.


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  3. #3
    ICN Member
    Join Date
    May 2017
    Posts
    46

    Re: Pain just before starting urination that dissapears after flow starts?

    Quote Originally Posted by ICNDonna View Post
    I had a problem urinating after I had surgery to correct a stress incontinence problem, but it didn't last more than a month or so. Have you tried any of the medications that help relax the bladder muscles so it's easier to urinate? The ones I think of are hytrin, Flomax, and Cardura.

    I hope this problem eases for you.


    Donna
    Hey Donna =)

    I started the oxytrol patch 3 days ago, thats supposed to relax the bladder isnt it? I will need to give it more time.
    I wonder why it is happening? Like is it ic related or operation complications still?

  4. #4
    ICN Staff ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    41,442

    Re: Pain just before starting urination that dissapears after flow starts?

    Quote Originally Posted by samilia View Post
    Hey Donna =)

    I started the oxytrol patch 3 days ago, thats supposed to relax the bladder isnt it? I will need to give it more time.
    I wonder why it is happening? Like is it ic related or operation complications still?
    I suspect it's from the surgery --- especially if they tightened the sphincter --- if that's the case, mine resolved itself --- I'm sorry I don't remember how long it took.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  5. #5
    ICN Member
    Join Date
    Oct 2016
    Location
    Shropshire, UK
    Posts
    26

    Re: Pain just before starting urination that dissapears after flow starts?

    Hi Sam
    I have the exact same thing exactly as you describe in the same place. The action of the movement of that sphincter to get the pee flowing really hurts but it's over in an instant and once the pee is flowing there's no pain. I sit there trying to relax everything beforehand but it still hurts, I've had this every time I pee for about 10 months. It started for me 3 weeks into a stubborn bacterial infection whilst taking Nitrofurantoin, the infection symptoms cleared up a couple of days later but this pain stayed with me. I haven't been diagnosed with IC yet, I've so far been too scared to have the cystoscopy. Please let me know if you find anything to relieve the pain.
    best wishes
    Sarah

  6. #6
    ICN Member
    Join Date
    May 2017
    Posts
    46

    Re: Pain just before starting urination that dissapears after flow starts?

    Quote Originally Posted by ICNDonna View Post
    I suspect it's from the surgery --- especially if they tightened the sphincter --- if that's the case, mine resolved itself --- I'm sorry I don't remember how long it took.

    Donna
    My operation was a year and a half ago. =( its probably here to stay.

  7. #7
    ICN Member
    Join Date
    May 2017
    Posts
    46

    Re: Pain just before starting urination that dissapears after flow starts?

    Quote Originally Posted by Sarah1975 View Post
    Hi Sam
    I have the exact same thing exactly as you describe in the same place. The action of the movement of that sphincter to get the pee flowing really hurts but it's over in an instant and once the pee is flowing there's no pain. I sit there trying to relax everything beforehand but it still hurts, I've had this every time I pee for about 10 months. It started for me 3 weeks into a stubborn bacterial infection whilst taking Nitrofurantoin, the infection symptoms cleared up a couple of days later but this pain stayed with me. I haven't been diagnosed with IC yet, I've so far been too scared to have the cystoscopy. Please let me know if you find anything to relieve the pain.
    best wishes
    Sarah
    Quote Originally Posted by Sarah1975 View Post
    Hi Sam
    I have the exact same thing exactly as you describe in the same place. The action of the movement of that sphincter to get the pee flowing really hurts but it's over in an instant and once the pee is flowing there's no pain. I sit there trying to relax everything beforehand but it still hurts, I've had this every time I pee for about 10 months. It started for me 3 weeks into a stubborn bacterial infection whilst taking Nitrofurantoin, the infection symptoms cleared up a couple of days later but this pain stayed with me. I haven't been diagnosed with IC yet, I've so far been too scared to have the cystoscopy. Please let me know if you find anything to relieve the pain.
    best wishes
    Sarah
    Its so good to hear im not alone in this (so sorry you have this though) as it is painfully awful..

    I have had a resistant "SUPER BUG" following the catheters from my surgery and after my surgery. My bug is resistant to all antibiotics known to exist bar nitrofurantoin and cipro. So every time i got to gp for antibiotics they always put me on 5 day course (not long enough for super bug resistant to most treatment) and they suallu dont culture. This is why i have this for so long.

    I have been on nitrofurantoin for 13 days now and all of the severe uti symptoms have dissapeared, but the that spincter symptom remains. I also have urethral burning... im convinced the glomerulations my uro saw on cystoscopy was from my inflammation caused by bacterial infection. Why she diagnosed me with IC, I, have no idea.

    My cystoscopy sent me into severe pain for 6 weeks. I think because of the hydrodistenion. The stretching my bladder irritated my already inflammed bladder. I think that people who have the hunner (spello) ulcers are the people who benefit from the hydro. I believe those people have real interstitial cystitis. And i think a lot of pther people probably have low grade chronic utis that causes inflammation and chronic symptoms but because the bacteria low the test come back negative for a uti.
    (Im not discrediting anyones diagnosis- im just giving my theory on what i think IC really is, as there seems to be a great variation between the two types(glomerulations vs hunner ulcers type).

    Ask your gp /uro to do a urine culture for bacteria less than 10 to the power of 3 cfu per mil of urine (= <1000). The standard threashold uti test is 10 to the power of 5 or higher - 10^5 (>100,000), so they never pick up the low grade uti. You may still have a uti with 99,000 cfu bacterial load per mil of urine and your infection will get missed unless you specifically test for bacteria cfu <1000 (10^3).

    Does that all make sense???
    So you very well may still have a chronic low grade uti. Even if you are on nitrofauntoin because nitro isnt very good at penitrating tisssue in the bladder therfore it is a leas effective antibiotic. And low grade infections with resistant bacteria adhere to the baldder wall and create a biofilm to protect themselves from antibiotics. You may need a highly penitrative antibiotic such as cipro. Only reason i am not trying just cipro yet is because of the risk of permanent nerve damage it can cause due to its high ability to penetrate tissue and damage the peripheral nervous system. There are actually a lot of cipro law suits because of permanent disabilty due to that drug. So yeah... im staying on nitro for a few more weeks yet. Cipro last resort.

  8. #8
    ICN Member
    Join Date
    Mar 2017
    Posts
    30

    Re: Pain just before starting urination that dissapears after flow starts?

    Sam it might be the surgery that caused it. I know it hurt badly with flow, but for me it is minimized to manageable in a 6 weeks yet not fully relieved. Have you tested it for some other infection? Hope things will change Good Luck!!

  9. #9
    ICN Member
    Join Date
    Oct 2016
    Location
    Shropshire, UK
    Posts
    26

    Re: Pain just before starting urination that dissapears after flow starts?

    It makes total sense and I agree with what you're saying about bacterial low grade infection. It is awful, I hate that anyone else is suffering with it but as you say I'm glad to have found someone with something similar. I understand there are a variety of reasons which started 'IC' for many but in some cases, certainly mine, I feel bacteria is to blame. I actually had a broth culture done on my urine back in January and enterococcus and e coli were found, I understand this method is controversial because of possible sample contamination but I really believe in my case this bacteria is still lurking. I was subsequently put on Nitro but I think the bacteria has really got inbedded around my urethra/bladder neck where the Nitro just wasn't touching it. I agree with you that I think a more tissue penetrating antibiotic is required. I've just this week sent off another sample for broth culture and am awaiting the results, depending on what these are I will be asking the GP for a different antibiotic. Last time despite the e coli being sensitive to many abs the enterococcus was resistant to many (including Cipro and Doxy) that I'd already taken (unfortunately short term) to try and get rid of this infection which makes me think it is now enterococcus that's causing these lingering problems. I think the only other ab it was sensitive to was amoxocillin. What you say about Cipro is interesting, it was after taking one tablet that my urge and frequency shot up whereas it wasn't an issue before and it stayed with me for months and still isn't completely gone. I only took Cipro for 3 days. Please keep me posted on how you're getting along.

  10. #10
    ICN Member
    Join Date
    May 2017
    Posts
    46

    Re: Pain just before starting urination that dissapears after flow starts?

    Quote Originally Posted by raun cesar View Post
    Sam it might be the surgery that caused it. I know it hurt badly with flow, but for me it is minimized to manageable in a 6 weeks yet not fully relieved. Have you tested it for some other infection? Hope things will change Good Luck!!
    Yes. Im affraid it is the surgery. And thats its permanent. I cant look into it because everytime i mention it to the urologist she says she thinks its "IC " related. I find it funny that before my operation i never had that feeling in my life, to the very first pee post operation ot was there and never went away.
    I think my uro is convinced that all of my problems are IC. I am convinced that all ofy problems are surgery damaged, retention and infection from the chronic retention.
    I dont have StdS or anything like that so no other infection.

  11. #11
    ICN Member
    Join Date
    May 2017
    Posts
    46

    Re: Pain just before starting urination that dissapears after flow starts?

    Quote Originally Posted by Sarah1975 View Post
    It makes total sense and I agree with what you're saying about bacterial low grade infection. It is awful, I hate that anyone else is suffering with it but as you say I'm glad to have found someone with something similar. I understand there are a variety of reasons which started 'IC' for many but in some cases, certainly mine, I feel bacteria is to blame. I actually had a broth culture done on my urine back in January and enterococcus and e coli were found, I understand this method is controversial because of possible sample contamination but I really believe in my case this bacteria is still lurking. I was subsequently put on Nitro but I think the bacteria has really got inbedded around my urethra/bladder neck where the Nitro just wasn't touching it. I agree with you that I think a more tissue penetrating antibiotic is required. I've just this week sent off another sample for broth culture and am awaiting the results, depending on what these are I will be asking the GP for a different antibiotic. Last time despite the e coli being sensitive to many abs the enterococcus was resistant to many (including Cipro and Doxy) that I'd already taken (unfortunately short term) to try and get rid of this infection which makes me think it is now enterococcus that's causing these lingering problems. I think the only other ab it was sensitive to was amoxocillin. What you say about Cipro is interesting, it was after taking one tablet that my urge and frequency shot up whereas it wasn't an issue before and it stayed with me for months and still isn't completely gone. I only took Cipro for 3 days. Please keep me posted on how you're getting along.
    Hey, im sorry you are going through this hey.
    How are you feeling? Any difference with the pain yet?? Im on day 17 of nitro and the urethral burning dissapeared about 2 days ago!! After it being non stop for months. So im super happy with that, but all of my other sphincter issues are still there. Still just as bad. I just went to pee 5 minutes ago and its still super bad. I wanna know what it is. I want a name for this syndrome so i can find a fix or at least treatment. Theres really nothing about it on google.

    Please update me on your new broth culture results. Id love to know! I hope we find answers to this. Im thinking if finding a new uro.


    Sam

  12. #12
    ICN Member
    Join Date
    Oct 2016
    Location
    Shropshire, UK
    Posts
    26

    Re: Pain just before starting urination that dissapears after flow starts?

    Hi Sam
    I had a bad day yesterday unfortunately, I was getting a lot of soreness up in my urethra and even slight pressure on my bladder gave me a horrible 'shock' type feeling down my urethra. I'm hoping today will be a little better. It's great that the burning in your urethra has disappeared, that's brilliant news after months of suffering. It sounds like the Nitro is helping. I got my broth culture results, still showing e coli and enterococcus but this time they are sensitive and resistant to different types of abs. The e coli was over 300,000 so quite a significant amount despite at the time of giving the sample my symptoms hadn't particularly been any worse. There wasn't any blood showing but there was a large amount of epithelial cells in the samples. The Dr wants to try me on Doxycycline and Nitro together for a couple of weeks, she thinks that the entero has lost some of its resistances over the last few months as it was resistant to Doxy last time. I'm going on holiday tomorrow so the Dr has said to wait until I get back to start the abs. I'm keeping everything crossed that they will finally get rid of these urethral symptoms. Like you I just want to know what the hell is causing this, I spend hours and hours scouring the internet trying to work out what it is but there is just nothing out there as you say. I so hope we find the root cause of these issues, at this point I don't care what it is, I just want to know! Please do keep in touch either via this thread or private message.
    Sarah

  13. #13
    ICN Member
    Join Date
    Oct 2015
    Posts
    406

    Re: Pain just before starting urination that dissapears after flow starts?

    sorry i'm in a rush so haven't read the whole thing. quick things those...
    have you seen a pelvic physio? if everything is tight that might help.
    Ecoli is helped by D Mannose.... so you could try that on top

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •