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  • RAS6
    replied
    Originally posted by born2swim View Post
    Thanks for your reply!
    The urologist wanted to hold off on the cystoscope all this time since I had not bleeding or previous history of a UTI (which the second opinion gyno was shocked about). Oh well, at least it is getting done soon (and I'm terrified!)

    Thanks again!
    I was scared about the cystoscopy, but I had to have 2 and found they were virtually painless. Both Doctor's used lots of Lidocain to numb me up. To be honest, I had more issues with the Urodynamics causing my bladder to spasm painfully. But that was just me! I too have had to give up exercise and it bothers me alot. I wasn't a runner like you, but I was serious about getting fit and had been doing Pilates and/or kickboxing 5 days a week for 6 months. I can do very ilttle now due to all of my pain. Just walking around the grocery store leaves me in terrible pain! I have Pelvic floor dysfunction as well as IC. Have you looked into that? I am able to (after almost a year) figure out whether my pain is IC related or PFD related most of the time. The PFD pain in my side and back and legs and pelvis and vagina usually comes with physical activity. Even lifting laundry baskets can bring it on now. UHG! I need to find a physical therapist within driving distance to finally get this under control!
    I hope you get some relief and answers soon!
    Good luck!

    Leave a comment:


  • Kara29
    replied
    Talking about pain on certain sides has me thinking of PNE. I have this disorder on my brain. I just ran across this post. I know close to nothing about pelvic floor therapy. I am slowly learning.

    Well Wishes to you!

    Kara

    Leave a comment:


  • born2swim
    replied
    Thanks for your reply!

    In Nov. I started to have this pain on my left when I ran. So I blamed it on a running injury. I got tired of "resting" it and ran through the pain. After a few days of running, I had bladder issues. Everytime I ran, I felt like I was going to pee my pants, but I never had incontinence... but I always had that urge to pee. So started the frequency issue. It was only a problem when I was active (exercising, walking on campus, etc). My internist was out of town when it started to really bother me, so I went to urgent care (thinking it was a UTI without the burning). They told me it was a yeast infection that irritated my urethra = Diflucan and Urised. That did nothing, but then the symptoms faded a bit, so I thought I was getting better. "Flare in Dec"... but my flares were with my periods. So, in Jan, went to my first ob/gyn. He said it is a urological problem and got me into the urologist a week later (he also started me on 3 month cycling birth control pills). Urologist gave me Detrol, then Vesicare, then Ditropan. I went back to him in Feb (with no improvement) and he doubled the Ditropan. My periods have been progressively getting worse, so I went to my ob/gyn again and he suggested lap. for endometriosis or starting Lupron blindly. I was a little hesitant (due to the prosepct of surgery) and so I saw another ob/gyn based on 2 referrals. He said my problem is related to my urethra, gave me pyridium and an antibiotic. He suggested the IC diet to see if I have allergies that aggrivate my bladder (people with GI problems sometimes are from allergies). I don't really notice any improvement with the diet but the pyridium/antibiotic seems to help with the night time peeing (2-4 times a night now which is an improvement). My gyno said that my periods are an inflammatory response (and I can't take anti-inflammatories), so I was given Valium to help my pelvis rest when the pain was unbearable. I have been adamant about avoiding pain meds, but when my period hits I just die with the pain. The day-to-day pain isn't all that terrible... it's always there, a dull ache that I sometimes can ignore... but it's the constant need to pee that I can't tolerate. It makes me nautious sometimes. My period makes it infinately worse, so they want me to take continuous BCP instead of my current cyclic one to stop my periods (but having one for a month was not what I had in mind with this drug! Hopefully it got the spastic bleeing out of its system and I'll miss my periods from now on)

    So... basically, I am seeing if the new birth control helps, seeing if the rest of the antiboitics/pyridium helps, and what the cystoscope shows. I go back to the ob/gyn in 2-3 weeks.

    I'm just so sad about this. I haven't been able to exercise since early November. I've tried it here and there (just weight lifting) and it makes me worse. Going to class is rough. I can't travel. I just sit around all day, and it depresses me. I was training for a half-marathon, finishing up undergrad, applying for professional schools... and this is just killing me!

    Thanks for your support! I don't know what is actually giving me trouble... but hopefully they will ID it soon. The urologist wanted to hold off on the cystoscope all this time since I had not bleeding or previous history of a UTI (which the second opinion gyno was shocked about). Oh well, at least it is getting done soon (and I'm terrified!)

    Thanks again!

    Originally posted by RAS6 View Post
    born2swim, I am so sorry to hear all you have had to go through! I was told I probably had IC at my first Urologist visit, but it took them 6 weeks to get me in for the in office Cystoscopy and Urodynamic teasting and that was so hard. I had pain only on my left side when this all started, but as my symptoms of frequency and urgency increased, the pain increased and spread. I went with pain in that one spot on and off for a year until my third ob/gyn finally connected that I was peeing 20+ times a day! I had to go to several Doctors before I found an IC specialist who will help with my pain and give me lots of options, but I hope that won't be the case with you. Please keep posting here and I hope you get some answers and a diagnosis soon!

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  • RAS6
    replied
    born2swim, I am so sorry to hear all you have had to go through! I was told I probably had IC at my first Urologist visit, but it took them 6 weeks to get me in for the in office Cystoscopy and Urodynamic teasting and that was so hard. I had pain only on my left side when this all started, but as my symptoms of frequency and urgency increased, the pain increased and spread. I went with pain in that one spot on and off for a year until my third ob/gyn finally connected that I was peeing 20+ times a day! I had to go to several Doctors before I found an IC specialist who will help with my pain and give me lots of options, but I hope that won't be the case with you. Please keep posting here and I hope you get some answers and a diagnosis soon!

    Leave a comment:


  • born2swim
    replied
    My urologist believes that there is IC... but it is not easily detected and is overdiagnosed. At least he doesn't call it psycosomatic. He never said there was an age limit. I have one doctor suspect one thing, another doctor something different, another with some other hunch... then one doctor said, it has to be in your mind... but he also said that things can be missed easily and that urethra pain on an exam was a good indicator of what the problem is.

    Oh well... I have a cystoscope in a couple of days... then I'll go from there. I have just over 2 weeks left in my antibiotic/pyridium... and we'll see what happens next. I've been having more trouble peeing the last couple of days. I could not sleep last night at all. I am getting so tired...

    Thanks for your post! It's good to know that I'm not alone with this. Very few people understand how bad this is for me. A friend got a UTI this weekend and had to pee all the time. She thought, "Oh God, that's what she's been dealing with for months". Until it happens to someone, they dont' really understand how bad the urge to pee is when it never goes away.

    Thanks again!

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  • ICNDonna
    replied
    to the IC Network. I'm glad you found us. The Patient Handbook on this site (link at the bottom of this message) will help you learn more about symptoms and diagnosis. You'll also find the IC diet there and you might want to give that a try while you're waiting for your urologist appointment.

    I know how frustrating the time before diagnosis can be and hope you find out what's going on very soon.

    Warm healing thoughts,
    Donna

    Leave a comment:


  • jen74
    replied
    I also do not get any burning while I am peeing. Even when I had a big nasty UTI, I did not get burning while I pee. I think everyone is different. When I had my last UTI, the nurse asked me if it burned when I pee'd and I said no, and she said she doubted I had a UTI then. I told her I never get the burning while I am peeing. So everyone is different.
    It also makes me sick that some doctors have the gall to say the pelvic pain is pyscosomatic. What they are really saying is that they are not knowledgable enough to figure out what is wrong so they have to blame it on something rather than to admit the truth and just say they dont know!! But unfortunately, alot of these doctors have way to big of an EGO and dont like to admit when they are clueless about something. It is sad because then us as patients are the ones who suffer.
    When ever I go to a doctor who tries to tell me something is in my head, I will never go back. I had this happen with my other stomach illness I have. I had an idiot doctor actually tell me I my issues were all pyscosomatic when I was getting severe stomach pain, nausea, severe bloat and lost over 30 lbs in less than a few months because I was so sick. Needless to say I was not sick at all prior to that and that all my issues started after being on some strong antibiotics which I think may have caused my motility disorder.
    Doctors can be stupid. I had the first Urologist I went to tell me that there was not such disease as IC and that women who had these issues were all over 50 and that since I was 32, I could not have this problem. I never went back there.
    Anyhow, just know you are not alone. I hope you get some relief soon.
    Jen

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  • born2swim
    replied
    Well, I'm not diagnosed with IC (still going through tests and trying meds, etc). I only have pain in the lower left quadrant. It doesn't burn when I urinate, nor is that "pressure pain" alleviated with urination. My gyno believes I have a urethra problem, not bladder (and on a physical exam he touched it and pain shot across my left pelvis). Urethra syndrome? IC? Who knows. He said to do the IC diet, to take antibiotics, Pyridium, and come back after a month. I have just over 2 weeks left in that plan, but I thought since I cut out 95% of irritants I would try something and see how I feel. Friday, I had a tea (regular with caffeine). I didn't notice more trouble. So the next day I had tea again (love tea!) and spicy food for dinner. I was up all night peeing. He said that I could have an allergy or irritation response to my diet. So, I still have a cystoscope to check for IC. The bladder meds haven't helped, but the antibiotic/pyridium/diet did seem to help (I also had to take Valium for my period which, according to my gyno, it aggrivated my urological problem). Anyways, I thought I'd share what I'm dealing with... because my urologist said I could have IC, but we'll talk about it after my cystoscope (and possibly hydrodistention). I hope you get some answers for your pelvic pain. It is terrible to feel sick all the time. Some people believe that pelvic pain is psycosomatic, which really makes me mad. I hope you get your problem ID'd soon! (Oh, I've never had a UTI before, and my symptoms are frequency, urgency, pressure pain, weak urine stream, and now retention with Ditropan which I hope to stop soon).

    Good luck!

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  • smcclafferty
    replied
    My left side hurts more too...

    Leave a comment:


  • soccermom32
    replied
    My pain moves for different reasons. I understand it now thanks to all the biofeedback from PT.

    When my pain is lower left side I know that is my psoas muscle which in a spasm from mid-abdomin all the way vaginally. It always hurts on my left side where you would think your ovaries are.

    When its dead-center pubically I KNOW my bladder is flaring. So, I have 2 issues going on, IC and PFD. You may too. If you are having muscle spasms and have trigger points - taking out your ovaries will do nothing for the pain unfortunately. Is so unfortunate how many women have hysterectomy's and partial hysterectomy's only to find this out. WHY aren't our doctors more educated about this!!!

    There may be much more going on with you then just your IC. My doctor and PT both agree that bladder pain should be dead center regardless where the lining is affected. Hope you find your answers

    Leave a comment:


  • lnseagraves
    replied
    When I first had IC symtoms, I had a lot of pelvic pain on my left side. So much, in fact that I couldn't lie down on it at all. Now, its mostly all over my pelvic region, but its been almost 5 years since that initial left side pain began.

    Leave a comment:


  • ngazerro
    replied
    I don't have pain in the middle. It does change sides sometimes. I also have alot of flank pain in my kidney area. I don't get it either.I think everyone is different.
    Last edited by ngazerro; 04-07-2007, 01:38 PM.

    Leave a comment:


  • miz_sunshine87
    replied
    my left side is worse too. I have pain/pressure all over, but it seems to be centred slightly more to the left side.
    Also, if I have spasms (shooting pains running up and down my bladder), most of the time they are on the left side.

    Do you not have any pain at all on your middle-right side? I suppose it is possible for only one part of the bladder to be damaged, but what do I know?

    Leave a comment:


  • ngazerro
    replied
    I had pain on one side for a while. They thought it was my ovaries and I had them removed in July 06. Still had pain then they found a mass were my ovaries were and removed that in Dec 06. Still had pain so finally they sent me to my uro and they did a hydro and confirmed IC. I have pain on one side sometimes and then all over other times.
    Last edited by ngazerro; 04-08-2007, 12:33 PM.

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  • pat9278
    replied
    Thanks- I think all in all that I probably have IC. I've had problems with UTI's for years- But with a UTI it feels bad all over not just on one side. And, I don't have that burning sensation when i pee so I didn't think it was my bladder but I guess it could be. It's comforting is a strange sort of way to know that someone else knows how you feel Thank you so much!

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