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  • Symptoms worse when...

    My doctors are trying to diagnose me, as my symptoms are so severe (frequency and urgency). It keeps me up at night (I actually got a "good" night's sleep last night where I only woke up 3-4 times to pee). Straining is getting really old too. I have a cystoscope in 2 weeks, so hopefully they can see the source of my trouble.

    My question is this: Do your symptoms get worse the more active you are? I can sit all day (reclined), but as soon as I stand up, I have that horrible urgency/frequency that never stops. I can't function or go places because of this. I'm house bound most of the time.

    I was just wondering if your frequency/urgency issues are amplified with movement. I don't have the IC pain everyone talks about. I do have a pressure sort of pain on my left, but not like cramping pain (and it doesn't worsen when I hold my bladder).

    Anyways, thanks for your help! I'm trying to start the IC diet (per MD's suggestion). It is extremely hard for me
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [

  • #2
    Have you reserched PFD.. You could have this instead of IC..It mimics alot of the IC systoms...Heres is what it is



    What is pelvic floor dysfunction (PFD)? This is non-neurogenic, uncoordinated behavior of the pelvic floor musculature. This is not like Parkinson’s or multiple sclerosis. This is a person who has no obvious neurological disease and the muscle function is uncoordinated. normally the bladder sits in a funnel of muscle. When one voids, the muscle of the bladder contracts, thereby forcing out urine. At the same time, the muscles of the pelvic floor, the levator muscles, and the muscles of the GU diaphragm have to relax. That is the normal process of voiding; it is a complex neurological mechanism. When this happens, there is a good stream of urine. In a patient with PFD, the bladder contracts and the muscles open up, but they are in spasm. They are not working properly. They open and urine does come out, but this can lead to disruptive symptoms.

    The symptoms of PFD are similar to IC. A patient with IC typically has pelvic pain, the pain often worsens with bladder filling. They usually have day and nighttime urination, and their symptoms are affected by foods, in many instances. The patients who have PFD have similar complaints with a subtle difference (keep in mind that PFD can coexist with IC): IC should not normally result in a poor urinary flow rate. One exception is that if you are urinating tiny volumes each time, you will never be able to generate a good force of the urine stream. If you still have a poor urinary flow rate, that is suggestive of something else going on. In a male, you have to consider the presence of the prostate gland, which can also be causing problems. The first focus of attention in a male is typically on the prostate as a cause of blockage.

    Constipation can also exist in a patient with PFD. Constipation occurs for the same reasons a patient will have problems with urination; the patient tries to push out the bowel movement, but the muscles around the anus and the pelvic floor muscles are contracting at the same time. The stool sits in the rectal vault.

    There are two different types of complaints regarding intercourse: either there is terrible pain during intercourse because the penis is coming directly into the rigid muscles, or there is discomfort the day later. This is commonly seen in both IC and PFD patients.

    Many patients have the sense of incomplete bladder emptying. They feel like they have to void again as soon as they are finished. Some patients cannot empty their bladder. Usually patients who have just PFD and no significant IC do not have nighttime frequency. They just have frequency during the day. There is also a typical history of straining with urination. It is interesting to see the number of patients who say they don’t strain, yet during testing that is performed, they are straining quite a bit.
    __________________
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #3
      I didn't know that you could have PFD without IC (they haven't ruled out IC or diagnosed me with it either). I saw my gyno last week and on a pelvic exam he touched my urethra and boy that hurt. Then he touched my bladder, and except for making me feel like I needed to empty (I've been having residual volume since starting Ditropan), my bladder didn't hurt. It never hurts when filling (or when I hold it). If I do hold, I get really nautious, but not pain. No burning either. That is why they're tiptoeing around a diagnosis. They know I have pain with my urethra now. On a transvaginal ultrasound, he could actually see spasms (but he didn't say if it was my bladder, the urethra, or the muscles surrounding).

      I strain so bad sometimes. I spend an hour in the bathroom (sometimes more than once a day) because when I stand up I have to urinate again. I strain, get some drops out, then try standing up again. It's a cycle. It is really an aweful feeling. I remember crying one night after it woke me up at 4 am and I spent 90 minutes with that cycle. I just stayed up because my pelvis hurt too much to go back to bed. During the day, I go, and return every 5-10 minutes until it "calms down". I refuse to take pain meds. I don't want to get dependent on them and I've had more pain than this in my life... but on the other hand, I'm not functioning well in my current condition. Tylenol doesn't touch the pain and I can't take and NSAID's. My gyno put me on pyridium, an antibiotic, and told me to keep taking Ditropan. They don't think I have anything like Endometriosis, but they can't really rule it out without surgery either. I've had 2 previous surgeries, so everyone is hesitant to explore.

      Thank your for the PFD information. When I see my urologist in 2 weeks (for a cystoscope), I'll ask him about it. I'll also see about getting Valium if he thinks I might have that problem. Until then, I will try stretching and warm baths. I've been taking a lot of baths lately, so hopefully a dx will be made!
      Thank you for your help! I've been going crazy with this! I've been miserible since the end of December, and November was no picnic either. Thank you!
      [SIZE="1"][B]Be well, Alyssa :hi:[/B]

      [

      Comment


      • #4
        Hi.
        The ditropan could be making you worse as far as the having to strain to pee. It can cause urine retention.
        I hope things all go well with the cystoscope in two weeks. Big Hugs.
        Jen

        Comment


        • #5
          What about the microscopic blood in the urine of many (most?) ICr's and PFD?

          in other words can PFD, like IC, cause an inflamed bladder that produces microscopic blood?

          Comment


          • #6
            Hi;
            Yes i know that feeling too. Its more like a pulling heavy feeling like you cant stand up all the way cosin a fully way it hurts. Then you go to the bathroom then it goes away? Thats what u feel.
            I have to be careful the type of activity i do, Cos it can make the pain worse, walking for me is not good. It can cause a flare up and dependsing what and how much walking can last 3 days or 2 weeks.
            So once i found what is setting it off, i try to avoid it unless its needed.
            I know a lot here say try heat on the pains, but for me makes it worse. I use ice on it. Its an inflamation, and usualy you will use ice on that. its worth a try.
            I hope you can get some relief soon.Are you on any medicantions for muscle relaxation? I am taking Elivel 150mg, and some times flexeril10mg. I started out with 25mg of elivil, and with in a 2 weeks time the docs upped to 150.
            Welli hope you are feeling well soon, take care, try hot baths also see if it will help relax the muscels some what.
            take care
            stacy


            Current Conditions:
            Endometriosis,1995
            IC,Feb 06
            IBS-C

            Prenecious Anemia
            Stomach Ulcers
            Duodenitis
            Acid Reflux
            Low Blood Sugar
            Hypothyroid
            Migrains

            Surgeries
            Laporoscopy-1995
            Gaul Bladder-1996
            Laporoscopy-2005
            colonoscopy2005
            cysto/hydro-2006
            cysto/hydro-2007

            endoscope-2007

            Meds:
            Elmiron,100mg 2am 2pm
            Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
            Elavil, 150 1pm
            Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
            Prilosec,20mg 1am 1pm
            Zoloft,100mg 1 pm
            Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
            Reglan, 10mg, 1 3xday with meals-for duonditis
            Ultram 50mg 1 every 4hrs as needed for pain
            Pyridim,100mg as needed
            Vicodin 5/500 as needed for pain
            Heating pad
            Ice Pack
            Arthritis Pain Equate brand 650mg usualy 2 at a time
            Stool softeners w/stimuli, 2am 2pm[/COLOR]

            Hopefuly no more gets added to the list!!!

            I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
            Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
            My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
            When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
            Dont forget to take care of you!
            Take care

            Comment


            • #7
              It's not good to strain; it will only make it worse. There are some medications that will help to relax those muscles so it's easier to urinate.

              Donna
              Stay safe


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              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.
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              Comment


              • #8
                It is soooo hard not to strain when it feels like if you could just get those last drops out you'll feel better, but Donna's right - it really can make things worse.

                Activity definitely amplified my IC symptoms, for sure. And stress alone could do it ---- I remember if my husband and I would have an argument I would flare right up.
                Kim

                Diagnosed August 2001

                Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                *****************************

                “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                Comment


                • #9
                  I sure hope they can give me a diagnosis after the cystoscope. They will have to give me Lortab first because I know it will hurt. I had a foley before (for surgery 2 years ago) and the pain from that was by far worse than the abdominal incision (for hours after its removal even... I wasn't even awake when they took it out!).

                  I asked my uro at my last visit about some retention with starting Ditropan. He said it could do that to me... but he still doubled the meds, thinking that my bladder has out of control spasms. It hasn't done anything. If anything, the pyridium and antibiotic I recently was put on last week has made a tiny improvement at night (they make me incredibly groggy, so I figured that is why the better sleep... only up 3-4 times with less straining).

                  I know I shouldn't strain, but when I stand up, that horrible feeling, like my urethra is still full, is too powerful. I have that pressure in my pelvis too... and I have to sit back down. I know I shouldn't, but it's hard not to! When I see the uro, I will talk about the meds, getting some sort of muscle relaxant (like Valium or something). I'm going to try and take more baths to see if that helps. I've never had a UTI, so they didn't say avoid baths.

                  I really appreciate all the support and information on this site! When I read about PFD, it really pegged me... shocking how much it did. If my gyno felt my urethra and that is what hurt me... could that be PFD, or is that solely urethra pain? Also, since my last pelvic exam, my vagina has been SO SORE, especially the opening! I am also spot bleeding with my birth control, so I just don't know what is causing the pain right now. I still have the pelvic pain, but now this pain. It helped to take a bath last night, but I really need another one. I lifted weights tonight (I can't do any cardio), but that was too much for me to handle apparently. I avoided working on my core, but doing leg exercises probably aggrivated things...

                  Thanks again!
                  [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                  [

                  Comment


                  • #10
                    Originally posted by stacyY View Post
                    Hi;
                    Yes i know that feeling too. Its more like a pulling heavy feeling like you cant stand up all the way cosin a fully way it hurts. Then you go to the bathroom then it goes away? Thats what u feel.
                    I have to be careful the type of activity i do, Cos it can make the pain worse, walking for me is not good. It can cause a flare up and dependsing what and how much walking can last 3 days or 2 weeks.
                    So once i found what is setting it off, i try to avoid it unless its needed.
                    I know a lot here say try heat on the pains, but for me makes it worse. I use ice on it. Its an inflamation, and usualy you will use ice on that. its worth a try.
                    I hope you can get some relief soon.Are you on any medicantions for muscle relaxation? I am taking Elivel 150mg, and some times flexeril10mg. I started out with 25mg of elivil, and with in a 2 weeks time the docs upped to 150.
                    Welli hope you are feeling well soon, take care, try hot baths also see if it will help relax the muscels some what.
                    take care
                    stacy

                    The meds I'm currently on are: Ditropan, Pyridium, some urinary antibiotic, birth control, and an allergy med. The pyridium and antibiotic were new (5 days ago). My gyno did a pelvic exam on me last week. He felt my urethra and boy that hurt. Is there a way to tell if it was the urethra or the pelvic floor muscles causing the pain? The funny part was he pressed on my bladder and it didn't hurt at all, just the urethra (why he gave me the pyridium and antibiotic). The transvaginal ultrasound actually showed spasms, but he didn't say if it was the bladder, urethra, or surrounding muscles. How can you tell if it is the pelvic muscles and not the urinary structures? Also, since that last exam (5 days ago), my vagina has been really sore, especially the opening. I took a hot bath last night and that seemed to help... but I lifted weights tonight (cannot walk or run since 5 months ago) and now I feel terrible. This is just so frustrating! I wish they would tell me what is causing the pain and frequency/urgency! I guess I'm glad they found the pain source... now just identifying the cause of the pain source...

                    Thank you for your help!
                    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                    [

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