question for those with interstial cystitis

Discussion in 'Fibromyalgia Main Forum' started by joannie1, Dec 12, 2002.

  1. joannie1

    joannie1 New Member

    I am real confused and hoping to get some insight on this. In September I had surgery for cysts on ovary. I had terrible abdomin pain. Okay it never let up after surgery and the healing process. Seen GYN for quite a while and wanted referrals before doing hysterectomy. One was a urologist to rule out interstial cystitis.
    Here is the problem. I have had troubles with my bladder since 2000. Seen the Urologist then and had a scope, ultrasound, and uroldynamics then. He refused to diagnose and sent me to Mayo. Mayo only repeated urodynamics then. Doctor was a jerk to be honest. Anyway, when i returned to the Urologist last month they did a pelvic check, urine and ultrasound. The urine tests came back with blood in it. Not visible to me but in the tests it showed. He dismissed it by saying I was probably just getting ready for my monthly. The pelvic test is very painful and the ultra sound to see how much left in my bladder was a lot. Nurse said he wouldn't like that it was 140 or something and the most he will call normal is 100 she said. he said it was fine though. Anyways, when i had the scope in 2000 he also said that I had polups or something in the bladder.
    This urologist said i was fine and not to worry my bladder was stable. However reading a little about this disease it says you have pain in the abdomin and sometimes there is blood in the urine. I have to go all the time. It is painful if I hold it and intercourse has gotten very painful. There are times my abdomin hurts so bad i can barely move from side to side in bed. I feel alot of pressure in the low abdomin too. I can't lean up against a counter or anything due to the pain in the abdomin.
    For those of you with this disease does this sound normal to you? I don't want to have a hysterectomy if it is not the problem.
    Thanks for your help.
    Joannie
    [This Message was Edited on 12/13/2002]
  2. joannie1

    joannie1 New Member

    I am real confused and hoping to get some insight on this. In September I had surgery for cysts on ovary. I had terrible abdomin pain. Okay it never let up after surgery and the healing process. Seen GYN for quite a while and wanted referrals before doing hysterectomy. One was a urologist to rule out interstial cystitis.
    Here is the problem. I have had troubles with my bladder since 2000. Seen the Urologist then and had a scope, ultrasound, and uroldynamics then. He refused to diagnose and sent me to Mayo. Mayo only repeated urodynamics then. Doctor was a jerk to be honest. Anyway, when i returned to the Urologist last month they did a pelvic check, urine and ultrasound. The urine tests came back with blood in it. Not visible to me but in the tests it showed. He dismissed it by saying I was probably just getting ready for my monthly. The pelvic test is very painful and the ultra sound to see how much left in my bladder was a lot. Nurse said he wouldn't like that it was 140 or something and the most he will call normal is 100 she said. he said it was fine though. Anyways, when i had the scope in 2000 he also said that I had polups or something in the bladder.
    This urologist said i was fine and not to worry my bladder was stable. However reading a little about this disease it says you have pain in the abdomin and sometimes there is blood in the urine. I have to go all the time. It is painful if I hold it and intercourse has gotten very painful. There are times my abdomin hurts so bad i can barely move from side to side in bed. I feel alot of pressure in the low abdomin too. I can't lean up against a counter or anything due to the pain in the abdomin.
    For those of you with this disease does this sound normal to you? I don't want to have a hysterectomy if it is not the problem.
    Thanks for your help.
    Joannie
    [This Message was Edited on 12/13/2002]
  3. Mikie

    Mikie Moderator

    And it is extremely painful. She is doing well now, but she also has to contend with vulvadynia.

    Love, Mikie
  4. pam_d

    pam_d New Member

    I have cystitis & also had ovarian cyst surgery this summer. I would recommend two things: find another urologist for a second (or maybe 3rd) opinion. Bladder/cystitis problems very, very common for FM/CFS sufferers, but it sounds like having another urologist's opinion (especially someone who isn't a jerk & you can really talk to) would be helpful. It seems like the other thing to do would be to rule out that there is residual scar tissue from your cyst problem causing pain, or anything else. I understand that your GYN wanted to rule out bladder issues before doing a hysterectomy, but I'm curious as to why he's going right to the full hysterectomy, when a laparoscopy to explore what's going on would be a less drastic thing---they could still do full hysterectomy if needed. I'm so sorry you are still in pain, hope you do find an answer!

    Hugs,
    Pam
  5. tandy

    tandy New Member

    It sounds like you&I have the exact same problem!!
    Every time I have a urine test done I have blood in my urine(hematuria)I have the same pain...almost always.It hurts to do dishes just b/c the countertop hits my lower belly and it hurts like hell!! I can't hold my pee long at all.....its burn&hurt like a sob.I've had the scope to look into my bladder too and all was OK.At one time i had a blood clot removed from my left Kidney.I've gone thru episodes of severe stomach pain,Even was hospitalized once b/c of being dehydated at the time.They find nothing.But the Drs have wondered if maybe I passed small stones and just did'nt see them????I have no clue but I have the same thing happening.(and yes,sometimes I do hear the ole.."maybe the blood in your urine is b/c your expecting your period")Also some of these times of pain...no bacteria is present in my urine? I don't know what to think....but somethings not right.Its never normal to have blood in your urine!!!I just think half these Drs don't know any more than I do!Most of the time I just suffer silently b/c the drs do nothing to help~(pretty damn sad huh?)I have the pain now and its been like this for a few weeks....again!!Do you have low back pain too?Or side stitch pain? I do!!!I'm not comfortable at all.By the way,I go all the time too.I can pee 3 times an hr!(during the day.Thank god its less at night!!)I'll be thinking of you and hope you find relief. I'm also waiting on going in for a Hysterectomy too!!I've had 2 GYNs want to do one....but I want to be certain that the pain is from my female organs first.I'd really hate to go thru a major surgery like that,and still have this pain!!I'm in the same boat~ Please let me know if you have the back pain/side pain too okay?Thanks joannie~
    love,
    Tracey
  6. joannie1

    joannie1 New Member

    I appreciate the responses from everyone. I plan to speak with my family Doctor about this on the 29th, my return visit.
    Pam, they are wanting to do the total hysterectomy because the pain has not cleared up. They removed my left tube and ovary and a ton of scar tissue from my uterus that had my bowels trapped. Anyways, my GYN thinks i have adenomyosis. It is within the uterus and causes alot of pain and bleeding. There is no way to detect this through any laprosopic surgery, that is what they did in September. There is no cure for it either except the hysterectomy. I am told it is like endometreitis but only inside the uterus.
    Tandy, yes i have severe back pain that right now is from the neck all the way down into my sacrum and SI joints. Low back pain being the worst. It wraps all the way around my hips like a big belt squeezing. It sucks.
    Thanks again everyone.
    Joannie
  7. tandy

    tandy New Member

    thanks for the reply on the back pain. Also ,My dr suspects the same!!Adenomyosis!!(my uterus)And there is no way to tell unless you take it out and biopsy.....so i've been told~ I do bleed more than I should,between periods.
    Are you finding any releif with pain meds??I ask b/c maybe I could request the same from my dr. Right now I have darvecet which does'nt help for squat!!
    I also have endometriosis and have had a few laps to remove growths and adhesions.
    Take care,
    Tracey
  8. 1Writer

    1Writer New Member

    when she was a teen...went thru "H--L" with all the tests and finally after having her first child and being cathetorized, she got relief...we think that her urethra needed dilating...seems to help now and when she has the burning, she takes a teaspoon or two of baking soda...that's right...just baking soda...it cuts the acid in the urine. Stops the bad spasm, too. There's also a drug on the market, Elmiron (I think that's how it's spelled), that's supposed to help w/IC, but it didn't help her...that's why we're leaning to the small urethra theory...hope this helps. Oh, and she gets bad lower back pain and cramping, too.

    1Writer
  9. joannie1

    joannie1 New Member

    I appreciate the replies.
    Tracey I find no relief. I too have the darveset but why take it when it does nothing? I have a bottle for three of four months. I go through flexeral alot though. I have to take one before going to bed or my legs are so restless I can't sleep at all. When my back gets really bad I go to my Chiropractor, infact going through treatment right now with him. After surgery I did get some relief with tylenol with codene but they didn't keep giving it to me. I was pretty tired from it but it helped with the pain and sometimes used the darveset with it. My Chiropractor told me he was meeting with one of our back specialists on Monday because he is beginning a new and improved back surgery. Probably one of the band aid procedures. My chiro believes I have post lateral disc herniations to three discs in the low back. Anyways he's going to discuss with him on Monday about my situation because all of my spinal ligaments and muscles (neck down to SI joints!) are lax right now and not holding my spine in place. He is a little worried about it. He did the trigger points and yesterday I had all 18 in pain. I don't know if this is what is causing so much of the pain right now or what. He said boy can you hide the pain Joan. I said just please don't touch me anymore. I feel like humpty dumpy and they can't put me back together again. He said I keep putting you back but you keep falling apart on me. Tracey if you have both adenomyosis and endo I would seriously consider the surgery if you have the choice. It really may help you. Alot of people say they feel so much better after having it done. I know it is scary to think about but my Hubby is really pushing for me to just do it. I don't know though.
    Thanks,
    Joannie