Latest Blog Article: Interstitial cystitis is more of an injury to the bladder
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  1. #1
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    Unhappy Why won't my Dr. prescribe pain meds?

    I was diagnosed with moderate to severe IC at 18 years old after having pain since I was 11 (when I started my periods). I have 2 bleeding spots in my bladder. I am surprised that anyone can live through such pain.
    Now, I am 20 years old and ever since I was 16 if I had a really bad flare I would have to call into work I am in so much pain. I am still working and I am also a full-time student. I went back to my urologist who actually specializes in IC because I have flares 2 to 3 times a day now. I told my doc how much pain I am in and she will not prescribe me pain meds. She has given me muscle relaxers and told me to take stress management classes. Also, I have really bad histamine reactions which are most likely from my IC....when I am anxious, nervous, excited, or stressed I break out in rashes and hives and start itching all over. She told me I am too young to take medication for something like that. If I am too young to take meds for something like that, does that not imply that I am too young to have reactions like that? I told her that it is only going to get worse because I am working on a 4 year degree in Criminal Justice and am going to be a police officer soon. She said that it will not get worse. Even though I believe a police job is #1 for stress.
    She has not tried Elavil, any kind of pain meds, or anything to try and help the pain. The muscle relaxer is causing me to only be able to sleep for 4 to 6 hours so she said I could stop taking it but this is the only thing she has given me that's actually helped the pain! What do I do? Is she basically telling me that I am too young to have pain with the already diagnosed moderate to severe IC? I do not understand what is going on! I have read up on her and she helped one lady get disability for IC!!!! Please tell me, is it because I am young? Because I am not crying to her? Because I am able to keep a job even though I am suffering? On a pain scale of 1-10 when I have my flares it is at least an 11. I cannot move, think, or anything! I cannot cry to my doc about it because as a potential police officer I am training to not show emotion. Is it because I am calm when I tell her I am in horrible pain? Please give me your opinions....they would be very much appreciated.

    Thanks!

  2. #2
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    I saw a lecture on YouTube where the doctor said he didn't prescribe pain meds because the pain comes back worse when they wear off. He called it "backlash."

    I've had a lot of people misunderstand me because I don't fuss much.

    Going to cognitive therapy, behavior modification sessions has been extremely important to my general health. I'm sure I would be much sicker without it.
    *
    Karin
    *
    I am not a doctor. If I seem to be giving medical advice, please do disregard it. Or I shall be forced to shoot.
    *



    *

    Diagnosed with glomerulations, IC May 8, 2009

    Symptoms since childhood
    Appears to run in the family


    Medications/supplements for IC:
    200:1 Aloe Vera Gel Extract Capsules 100 mg. per day
    Cystoprotek when a potential flare doesn't respond to diet.

    IBS medications:
    40mg Nexium daily
    Soluble fiber before meals as needed

    Other medications:
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    Clonazepam as needed
    Carisoprodol as needed
    no hormone suppliments at this time

  3. #3
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    Hey Mrs. Peel,

    Just have to say, I love the Avengers, hehe. I've seen many episodes.
    Anyway, I guess I can see how that might happen. The problem is that I have absolutely NOTHING when I flare at work or anywhere! I don't know what to do with myself and I am too stubborn to say anything to anyone and go home. I just sit and suffer. I would not take the pain killers all the time, just when I absolutely have to. And honestly, I do not think the pain could EVER be any worse than it is. What my doc does not understand is that the pain is so unbearable I would rather be dead. I feel that is the only way I would have any peace. And no, I am not going to commit suicide or anything like that.....I just cannot stress enough how bad the pain is. It would feel better for someone to rip my insides out. On top of that, I think I may have fibromyalgia. My mom has it.... I'm only 20 but my body feels as if it is 50. I do not know if it is from dancing for 10 years (tap, jazz, hiphop, ballet especially, etc...) or if I have a problem. I have to pop my hips back into place every day and my whole body feels bruised and I am tired all the time. *sigh*..... and about a billion other pains I won't even bother to name because now I just sound like a complainer. Anyway, please keep the opinions coming!!!

  4. #4
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    It seems to me that some fresh brains are in order. You should not have to suffer like this. Read up on IC treatments here in the handbook and in various threads and see if you can find some new docs, primary care and/or urologist, or possibly a urogyn if there is one in your area. There are lots of treatments availabe!

    You don't describe what type of pain you have, but if you have bad histamine reactions an antihistamine such as Atarax might help you. Have you tried taking antihistamines? They are often a part of IC treatment. If your current doc doesn't want to prescribe it, try an otc med like claritin and see if that helps or benadry.

    If you have UTI like symptoms you can also try otc pyridium, sold as AZO or Uristate. That is good for short-term pain management.

    Have you altered your diet at all? Read about the IC diet on this site. It can really help a distressed bladder and can be a life saver. It's a low-acid bland diet: no coffee or tea or caffeinated products, no soda or alcohol, no tomato or citrus, no soy and as few additives or preservatives as possible.

    I hope you find some relief asap! There is help out there, but sometimes it can take a while to figure out what will work for you. Many of us have worked through numerous docs to find one that's a good fit, so hang in there.

  5. #5
    ICN Member katie87's Avatar
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    i am in your same situtation, i am 21 and i have not 2 red spots but so many they can't be counted, some are bigger than a half dollar. i would guess 50+ ulcers, it was covered. I have pain everyday, i was calling out of work, now i am unemployed bc the pain was making me miss work. Anyway, i know you think pain meds will be your relief, i thought the same.i thought once she gave me pain meds, id be able to work, drive, lift, walk, have sex................ well they worked at first. I now take percocet from the time i wake up, till i go to bed, and you know what????? the pain is excruiciating and i sill cannot handle it, i still feel like screaming and crying and wish to die and be put out of my misery... i am sorry to say not everyone finds a pain free time, i have been in pain for 5+ years and the past 3 have been such severe pain daily i am losing my mind and know this pain will not stop until i die. sorry its not very upbeat, but i know in my case i thought pain meds would enable me to live a happy life with normal activitites and functioning, it does allow that SOME days.... but there are days I have maxxed out the amount of pain meds i can take and i am still crying, unable to move and wishing it would end.
    my name is Katie, 22 yr old mother & nursing student. I want to be a writer and midwife.

    I have severe IC w/ hunner ulcers and urethritis with lesions ENDO, chronic pelvic pain, PFD adhesions, scoliosis, arthritis,migraines,asthma chronic pain.

    Mother to a beautiful little girl. She has my heart and she's everything to me. Thinking positive and consciously untensing tense muscles helps a ton!!!! physical therapy also helps a lot.

  6. #6
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    Hey guys,

    Thanks for the responses. Like you, katie, i have been in pain for over 5 years.... I'm coming up on 10 years of pain, actually. My body is sensitive to everything, especially this. Sometimes i get a burning pain in my lower abdomin like some kind of acid is eating my insides out. I also get that same burning in my lower back and it radiates down my legs, when at its worst. I have an extremely high pain tolerance and can mostly handle the burning. I can also handle the feeling that someone is sitting on my lower abdomin. The other pain that nothing seems to help (my main problem), starts right after i urinate sometimes.... I feel a burning pain as i urinate, which i can stand, but right after that i have this uncomfortable painful pressure, like i have to urinate but i really don't. If i urinate again, it only gets worse. It's the kind of pain where you just want to crawl out of your skin. I have had a bladder infection before, and it's similar, except this is about 50 times more painful. It is so hard to describe the pain though.... maybe someone here knows what i am talking about. I can live with all the other pains, but this one makes me so uncomfortable that it is hard to think or do anything. If it hits at work i can hardly talk, all my muscles tense up and i just don't speak much. I don't ever tell anyone what's going on either, though. I always just ride it out.... But it is really taking a toll on my body, and for a while this was happening 2 and 3 times a day. All i want to do when it happens is go home and curl up in my bed and cry....though this really doesn't do a whole lot of good. I think the crying relaxes me a little though.
    My husband is taking me to a pain clinic soon, so we'll see what happens with that. And i have a police interview in 2 days....where i can show no emotion. I guess we'll see what happens with that too....

    Thanks for the replies! Oh and i have tried the IC diet. Unfortunately, some of the stuff it says i CAN eat, actually makes my symptoms worse....like fish. And sodas have never bothered me. Tomatoes bothered me until i started taking a lyco-mato supplement every day.... it hurt for about a week, but eventually i started CRAVING tomatoes. I stood over the sink and ate a tomato like an apple! You guys should try it! I haven't had a problem with tomatoes ever since!

  7. #7
    No longer active Preacher-Girl's Avatar
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    New doctor time. I can't believe your doctor, I just can't. I hope a pain mgt. clinic will take you seriously. Pain is pain. No matter what age you are. I really believe you are seeing the wrong doctor and as Goldfinch said "fresh brains" are in order. Please look for a doctor who has experience with IC. I would really suggest a good urologist (even if they are not close by to you) and a good primary care doc. They can work together to provide you the relief you need. You know, sometimes even young children get very sick. Doctors still manage their pain. It's shocking these doctors even have a license to practice. Why did these people become doctors in the first place?

    I hope this can be quickly brought under control and you can become a police officer. If not right now, then sometime in the very near future.

  8. #8
    ICN Member VickiB's Avatar
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    She has not tried Elavil, any kind of pain meds, or anything to try and help the pain.
    I guess I'm left wondering what then has she tried? Anything?

    As Goldfinch said, read up on IC treatments, self-help, etc, so that you know what IC options are out there. Then decide if your current doc is the right one for you. I don't know if you're one of them, but I can't believe the number of times people have posted that their doctor says there's nothing more they can do when they've only scratched the surface of treatments to be tried! That's so sad! Because the pain is very real, can drive one to the point of losing your sanity, and that should not be ignored!

    So, yeah, depending on what your doc has tried, or is willing to try, my thoughts go to the "Fresh brains" suggestion with the others.

    Tomatoes bothered me until i started taking a lyco-mato supplement every day.... it hurt for about a week, but eventually i started CRAVING tomatoes. I stood over the sink and ate a tomato like an apple! You guys should try it! I haven't had a problem with tomatoes ever since!
    I'm not sure I have the guts to try that! I'm going to have to research what lyco-mato is. How I miss tomatoes! I do know for me, diet is a major factor in my pain level and tomatoes/tomato products (especially salsa, Boo hoo!) are especially nasty triggers!

    I'm so sorry you're living like this and I hope you find relief soon!

    Vicki
    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

  9. #9
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    Hey VickiB, the lyco-mato is just tomato extract. I think what happened was that, since i am taking it every night, it keeps tomato in my body and has allowed my body to get used to it. Almost no one eats tomato every day, so then when someone with IC eats tomato, they are sensitive and it cause their IC to flare. Whereas, if you always have a tiny bit in your system, your body won't be as sensitive to it and so it won't be as shocking when you actually eat tomatoes. It's a theory of mine....it makes sense to me. Especially since this actually worked. Like i said though, it will hurt for a week or a little less than a week, then your body will get used to it. You can buy lycopene at walmart if you wanna give it a try...but i've been taking lyc-o-mato from the online Swanson store.

    Anyway, my doc, who is supposed to be an IC specialist, has tried muscle relaxers.....and has told me to go to pelvic floor therapy. When i was having trouble sleeping with the muscle relaxers she told me i should go off of them, but she offered NOTHING else. She recommended pelvic floor therapy because she was doing just a regular exam and i was cringing in pain. She was like, "Does that hurt?" I said, "Only when you move". Afterwards i was like, "So that's not supposed to hurt the normal person?" She said, "I was barely touching you, so definitely not". She never offered pain killers, pain blocker, nothing! She just gave me the muscle relaxers and told me to go to therapy. Well, the therapy is 1000 dollars out of pocket on top of co-pays...even though they accept my insurance! I told her i couldn't afford that. So she had another place call me, and i don't know how much that one is yet. But i am going to be more stressed out even if it's free! I have to fit it in between going to work and being a full-time student. On top of that, i really don't feel comfortable with some person sticking foreign objects (or even their finger) into my vagina on a regular basis!!!!! My doc said, "it'll hurt worse in the beginning, but then it will help". But she still never offered any other kind of treatment! Please tell me if any of you have done this physical therapy stuff and if it works. I REALLY do not want to go, i cringe just thinking about it.

    So like i said, she's given me muscle relaxers which gave me sleeping problems so she told me i could stop taking them. She tried elmiron a couple of years ago, but it gave me intestinal problems, so i couldn't take it. And now she's trying to send me to stress management classes and physical therapy and has given me absolutely no other options.
    She was the one who got me diagnosed, but she was not able to perform the procedure to diagnose me because she was out of town. So a guy in the same practice was the one who did the procedure and he wanted to put me on bladder instillations 3 times a week and gave me hydroxyzine. But i was 18 at the time and did not want to live in the doctors office in between college and teaching dance full time, plus the whole idea scared me. So i did not go back to my urologist until this year (almost 3 years later because the pains is more frequent and unbearable). And i've already told you the only treatments she has recommended. I was like, "well what do i do when i suddenly have a really bad flare?" She says, "Well, if you go to stress management they can help you learn to breath differently and relax yourself....." Does anyone else see this as bull crap?!?!?!

  10. #10
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    because they can...

    I went through alot of drs. when my IC started out of nowhere. I guess most doctors don't understand the level of pain involved with it, so they don't give out pain meds. Many just won't because they don't want to be sued or investigated by the FDA. I honestly believe many just don't care. I think you need to find a new dr. asap. There are lower level pain meds that can be precribed like tramadol or ultracet that can help reduce pain and are non narcotic. They just still have to be prescribed. I didn't notice in your post if you have been put on Elmiron yet? That is the first thing you should have been given if you have a positive diagnosis for IC. It can take months to work. Have you tried any alternative meds? Things like cystoprotek or freeze dried aloe vera? Do you soak in a tub to try to relax muscles? There are herbal teas that help some. I'm sorry you have to suffer. Have you been allowed to try any antispasmodics like urelle, prosed or utira-c? Those are for burning urgency/frequency issues. I find those are sort of a form of pain relief. I had good luck with 2mg of valium along with 10 mg of atarax at bedtime. I slept great on that. My prescription for valium expired and the doctor will not give anymore. So I've been struggling with sleep again. She doesn't mind giving the utira-c or atarax. I'm sorry you are being made to suffer. All I can really say is keep changing doctors until maybe you find someone to help, or see if you can get a referral to a pain management specialist. Good luck to you.

  11. #11
    No longer active Preacher-Girl's Avatar
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    Total bull. I would get a new doctor ASAP. Even a doctor that is just willing to really help you and is not an IC specialist. I am not sure how my Uro's office is with pain. They didn't want to give me anything (like Elmiron etc.) until my hydro/cysto etc. I get valium and Elavil from a Psych nurse specialist. I get Codeine from my family doc for endo pain. I don't get the same med from more than one practitioner which means I am not seen as drug seeking. There really won't be a day when my primary care and my Uro prescribe pain meds unless I have surgery. They are free to talk to one another. One time I called my uro because I wanted Elavil for a flare. I got a snobby doc on the phone and she gave me a bunch of baloney and refused to prescribe it. So I realized I needed to call my psych nurse and she prescribed it right away because I couldn't take the long flare and I was becoming depressed. It's a psych drug so she was comfortable with it.

    Specialists are usually only comfortable with a drug that directly effects the condition they are treating. My family doc doesn't prescribe Prosed because that is my Uro's territory and she didn't prescribe birth control for the endo because she wanted my gynecologist to do it. My psych nurse doesn't prescribe atarax because she sees that as not in her field. She will prescribe 2 mgs of valium for anxiety/migraines but will not prescribe a larger dose for my bladder if needed. She then sees that as Uro territory. So, unfortunately, you need to work the system a little because these days all practitioners behave this way.

    I would suggest making your own team of doctors if you are able to pull it off with your insurance. It takes time but when the wheels are really in motion you will always be able to get the help you need when you need it. Then you can see those docs but mostly you will probably spend time seeing your general practitioner as they follow your progress.

    Hope this wasn't too confusing.

  12. #12
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    Hey elamar, I have tried Elmiron.... unfortunately it caused intestinal problems and i was unable to continue taking it. I haven't tried baths because i don't know how to relax lol! If i sit down in a bath i think about all the things i should or could be doing and i end up getting out of the tub, lol.

    Wow, Preacher-Girl....I am glad you figured out how to work the system. I can't believe you have to go to all of those doctors! Thanks for the tips!

    I did switch doctors... my husband found me a doc. I went to the new one for the first time today.... I went for IC, a hip problem i have, fatigue, and my body feeling bruised all over. He looked at my age (20) and said that i was too young to be having all of these problems. He told me that it must be a result of an unhealthy lifestyle. I said, "I was a dancer for 10 years". So then he says "You need to exercise and stretch". I was like, "I DO exercise and stretch! I was a dance teacher!" So he tells me that he really doesn't want to give me any pain meds because he doesn't want me to get addicted, especially since i am young. I said, "I just need something for when i have the flares, i don't need to take it every single day.... But i need something for when i'm at work and have a flare and i can't even think it hurts so bad". I also recommended Elavil. He said that he would like to try that.... So surprisingly he gave me Elavil AND 5mg of Lortab! I thought he wouldn't give me anything! Then he said, "And if we find out that you have arthritis or something, then we'll really start worrying." So, i had blood taken. We'll see how that goes. Do any of you guys feel tired every day and have aches and feel like your body is bruised all over? Is this normally associated with IC?

    I am so glad i have something that may help with the pain now! I finally feel like someone is at least SORT of listening! Thank you guys so much for your help and replies!

  13. #13
    No longer active Preacher-Girl's Avatar
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    I am curious what kind of doc you are seeing now. Is he a general practitioner? I am thinking you may want to see a rheumatologist for your all over bruised feeling. Many of us have pain all over but I believe that is due to other problems - not IC. I don't think IC causes this. There are a few things that can cause this in my understanding. I have that bruised feeling more often lately. I have sleep apnea and that will cause it if untreated. Fibro, Lupus, and arthritis can cause it. However, what about a sports medicine doc? Or someone familiar. I know dancers can sometimes really wear down there bodies. To be honest, with wanting to be a police officer, you may want to get to the bottom of it as soon as you can. Over the years I wasted so much time with GP's who simply didn't even think of sending me to check for sleep apnea and they really should have. They didn't think of certain things because I was so young. It pays to be very proactive if you experience pain that interferes with your life. It's best to get the help now since you are young.

    I am glad your doc is trying the Elavil and pain meds. It's good to start slowly with Elavil. It may make you tired but it can really work for pain and discomfort. I hope it's your answer!!!

    Angela

  14. #14
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    He's actually an internal medicine doc. This practice is one of the only practices in our area which will prescribe pain meds. I was surpised when i filled my prescriptions though because i thought he had given me 5mg of Lortab....but it's actually 10mg. I'm really kind of a small person. I'm 5'3'' and look about 135 pounds but i'm actually 152 because of all the muscle from dance lol. Anyway, the 5mg after the surgeries i've had would not quite help the pain but if i took anymore than that i'd get loopy! So i'm surprised that he prescribed me that much! On top of that... i thought he was wanting me to do a low dose of the Elavil, but he told me to start with the 25mg and double it after a week! Isn't that a little much? I don't want to be treated for depression, just the pain. 50mg just seems like a lot! I was thinking around 10mg, ya know?
    My mom actually has Fibro....i'm starting to think she handed it down to me. Because i'm so achey, i feel like my legs weigh about 3 times the amount that they do. My husband makes fun of me because my footsteps are REALLY loud, especially when going up stairs. His footsteps are so much lighter than mine...and i didn't realize that until he mentioned it. He's 6'2'' and about 255 pounds. Weird, eh?
    But yeah, as a dancer i really killed my body. At the age of 11 i popped my back out of place and danced an entire recital that way with icy hot and aleve that my teacher provided because i'd cry back stage then run on and perform, lol! I would actually hide when i would cry so that no one would know, but one of my classmates found out what was going on and told the teacher lol. I have to pop my hips back in place sometimes twice a day, so i think i've worn down the cartilage in my joints. That's why i'm being referred to a chiropractor. The last time i went to a chiropractor he was more worried about my neck because it curves in the opposite direction than it is supposed to, lol. I really probably should go to a sports doc, he probably would know what's gone wrong. I tore part of my hamstring a couple of years ago and the physical therapist said he'd only seen that kind of injury from hockey players, haha!
    I think my body was just born old.

    Thanks again, Preacher-Girl! I appreciate the feedback!
    Oh and if you could, let me know the recommended dose of Elavil to help with IC. I just think my dose is a little much...and my body is really sensitive to all medicine, especially anti-depressants.

  15. #15
    ICN Staff SharonA's Avatar
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    My doctor started me off with 10mg Elavil and slowly raised the dosage to 50mg and then back down to 25mg, which I have been taking for several years.
    Sharon

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