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Need urgent help sooo sick with pain cant eat now

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pam47462
pam47462

Hi, new here I have been to every hospital in my area for IC for help, I get pain med's that don't do anything gone to two urologists. 4 hospitals and always sent home to rot.  my bladder spasms all day, constant urge to urinate, my bladder burns, my urethra burns like mad. No relief ever,  there are many times during the day it feels like lava coming out of my urethra.  even my vagina burns now and stomach. 

I have had soo many rounds of antibiotics and no more infection and it still hurts more than ever.  Its been 3 months now and have not been able to eat for 5 days now, I drink 8 glasses of water and want it out I cant sleep at all and have to sit up all day can barely walk.  My family is fed up and don't really understand at all.  The Dr want me to go to pain management but I am having such a hard time urinating and the side effects of all the drugs make it worse. 

I am so frightened and have no idea were to go for help. I am only 51 and used to work out every day and ate really well, now I feel like my life is over.   Was hopping someone had some ideas.

0 likes, 22 replies

22 Replies

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  • Amanda86048
    Amanda86048 pam47462

    Posted

    Pam, I'm so sorry for all the pain you're in. I have IC too, but nowhere near to the degree that you've been suffering. I'll make some suggestions, but forgive me if you've already tried them to no avail. Are you following the IC diet? It takes some time but does help. What about 1/2-1 tsp of baking soda in a glass of water 1-2 times daily? It helps reduce the amount of acid in your urine (be careful if you have high BP or sodium issues). Have you tried Elmiron? It can take a few months to feel relief but it has helped me.

    Bladder instillations? They can help A LOT faster than oral meds; I felt better in a matter of hours.

    Pelvic floor therapy? Some women have a strong pelvic floor dysfunction aspect to their IC. You can even find IC stretching/yoga routines online. I haven't needed "pain meds" per se, but have found AZO to help burning, frequency and urgency (usually). Hyophen has been great for bladder pain and spasms, though it can take a few hours to kick in. A probiotic may help with stomach and vaginal discomfort, especially after all of those antibiotics. Some people find that antihistamines help, usually prescription strength. Anxiety medications can also help, even with sleep. If you can get something to help you sleep, take it! Ambien has been a God-send, especially on nights when my bladder is very unhappy. Healing happens when we sleep and I hope you start healing soon. I've been depressed like you, thinking I'd never feel better, never sleep again but it can get better. We just have to take care of ourselves and find the right treatments. It's a lot of trial and error, unfortunately. An check out the IC websites, they are a wealth of information.

    • pam47462
      pam47462 Amanda86048

      Posted

      Hi thanks for your reply, nice to see some people that get how painful and devastating this can be and stick it out.
  • petalangel
    petalangel pam47462

    Posted

    Hi Pam, I  think it depends what country your in because you can't get a lot of the USA stuff in the UK. I see this post is old but thought I'd ask how your getting on. I've just been diagnosed with IC and the relief is beyond imagination because I though I was going mad! I've been back and forth to the doctor until they are sick of seeing me! I took myself to A&E Saturday as I couldn't stand the Pain any more. They did some tests which were all negative and tried to send my home but I stood my ground and Sunday saw a different consultant who was wonderful. I'm now booked for a full contrast MRI and the opp where they put a camera into the bladder to take a look. This all started when I had a stent put in last November, I think they did something wrong because even though the stent is now out I'm suffering the same pain. The hospital have given me Gabapentin Actavis which helps control the nerves and Vesicare along with diclofenic suppositories twice a day and its all helping, although the Gabapentin makes me feel drunk. I'm going to see if they can change it for something similar. Do let me know how your doing. X

     

    • pam47462
      pam47462 petalangel

      Posted

      No kidding i have been to so many er and dr they are just paying pin pog with me  Four months of uncaring drs.......
  • brenda53218
    brenda53218 pam47462

    Posted

    Hi Pam,

    I stumbled on this talk group, I was diagnosed with ic since 1-17. Although I believe I have had it longer, just not the pain. Like you I had the pain that drove me crazy. The only drug that is for IC is elmiron. But unfortunately alot of ins. Companies either don't cover it or only cover so much, in my case it would cost $320. Per month. So that's not going to happen. So I read where you can put ice on your pelvic area where bladder is. This seems to help some. Remember don't leave it on for along time. Another thing that I did was use a tens machine. This idea I also read about. But again do not leave on for long periods. You should first speak to your doctor and see what he says. I hope you start feeling better soon. I know it seems like you won't but as long as you watch what you eat, don't wear tight clothing, lift heavy items, you will eventually feel better. It took me over eight months and I still struggle some. Keep the faith.

  • Marylh
    Marylh pam47462

    Posted

    Hi, thought Id pop in and have my say as to this IC horror. It started with me nearly two years ago and in November of last year it suddenly went away. My gyn said it could go dormant or in remission. It lasted through January and now it’s back definitely making up for lost time. Yesterday being Easter Sunday, I had my usual special meal to prepare but thought I could get through. The pain has been horrific. I have been to two different docs...all they want to do are the installations. I have nothing for pain as the docs won’t prescribe any. One did give me some sort of anti depressant which I won’t take because it did nothing but add weight. I know that IC is not something that can be helped with antibiotic and one must strive at all times to adhere to an alkeline diet. ..  it is not always easy but it works. Drinking lots of water helps as well as doing Pilates seems to help. In addition, I do also keep freeze dried aloe Vera capsules on hand. But right now I am in so much pain and nothing seems to help. I just wish it would stop. I hate to admit this, but when t the pain gets really bad it can’t give me the added bonus of hemorroids. I wish all of you well and Pam, I see that your original post was originally written some time ago. I hope you are doing much better by now...I hope all of you are.
    • brenda53218
      brenda53218 Marylh

      Posted

      Hi Marylh

      I was beginning to wonder if anyone was going to add to this conversation. I'm so glad you did. As I posted before, I was diagnosed last year. And boy what a year it was. Between losing my mother suddenly hitting my head on a rock when I fell,which happened to be the same day my mother passed and this darn disease, I don't know if I'm coming or going. At this time my ic seems to be backing off as little. I still watch what I eat ,always watch what you eat and drink lots of water. Hope you and everyone else gets some relief. Hang in there

    • Marylh
      Marylh brenda53218

      Posted

      I’m so sorry about your mom, Brenda. That is a tough one. And you hit your head on the same day she passed? How awful. I actually sustained a tbi six years ago after falling down some stairs. It was pretty awful. As you state, I too believe I’ve had this IC longer. I was feeling a bit better from the weekend but it seems back again. I don’t know about you but for me I have  to stay ever vigilant in my eating and drinking habits as well as exercise. People who don’t suffer with this mess simply do not understand. Interestingly, my gyn once said to me that “IC is endometriosis’ sibling.” I never got the correlation but I feel it's true. Sometimes these pains feel the way it did when I really did have endometriosis, back in the 90s. I hate the pain and discomfort. Anyway, enough ranting...you are absolutely correct about watching what we eat and drink. It makes all the difference. Well, thanks for the response! I wish you well.

  • MrsC2017
    MrsC2017 pam47462

    Posted

    Hi Pam. Sorry you're feeling bad.  I believe I've had IC since 1984, never diagnosed.  They thought I was crazy, gave me Ditropan for spasms and dismissed me.  Now I'm in a flare, and I think I found a doctor that will help.  Anyway, the way I've gotten through this is Witch Hazel.  Wet a small cloth or tp with Witch Hazel and place on the urethra for at least 1 min... Instant relief.  It's almost like using a Tucks pad for hemorrhoids. On a bad flare, like now, I tuck the Witch Hazel between the labia and lay down using relaxation exercises for half hour.  Hope this helps while you find more help.  

    • pam47462
      pam47462 MrsC2017

      Posted

      I have the same problem as you even my husband and kids think I am faking it and crazy.  Told them the Mayo clinic says it can be as painful as end stage cancer.   Not that cancer is anything to scoff at.  I have the witch hazel on my grocery list.  May help better than the canesten.  Instant relief sound great.  Thanks for the tip I will let you know how It does.  Good luck to you and God bless.
  • pam47462
    pam47462

    Posted

    l want to thank you all for your kind words, advice and own personal stories.   Well here is an update things got so bad I admitted myself into the mental health ward I was so worried I would hurt myself.  Well the hospitals urologist was kind enough to visit me and he started the DMSO installations while I was there.  Boy they hurt anyways no success I still have to do one a month now.   I will be starting medicinal hemp oil in a few days.  A lot of money wow.  I want my Bladder still taken out.   I just had an MRI and waiting for results hopefully there is something surgical that can be done right away.  

    They weighed me and I have lost 25 pound, lol cant believe it myself.  This is sure horror of a problem.. Everything hurts downstaires and I have a huge problem urinating.   I am attempting to shop tommorow to pick up a few things.   I have read about freezed dried aloe vera, witch hazel for the burning, probiotics, vaginal stuff like canesten and a over counter med for to replace my vaginal flora.    I am drinking eight glasses of water a day and watching my out put.

    How did you all stand it!!!  I cant believe people can live like this it fell like I am being eaten from the inside out.  I am also taking gabapentin hope I spelled it right and Emeron I hear takes months to kick in.  Did any of you have anything you used that actually worked.  I am so desperate for any help and reading your stories got me motivated to keep trying.  I hate being on pain medication and spending all this money but what else is there I'm so tired and could use all the help I can get.   Thanks Again.

     

    • brenda53218
      brenda53218 pam47462

      Posted

      I am so sorry to hear that you are having such a terrible time . Were you diagnosed with ic?. It is not fun what so ever. I was diagnosed Feb 2017. Like you I was in so much pain. I tried everything from ice packs, heating pad,aloe vera , wearing loose clothing, watching what I ate. My urologist wanted to do instills but I wasn't willing because of the very narrow urethra that I have. The scope he did on me was so painful while he was performing it and for a week later. But I persisted and with all the above that I mentioned .I don't take Elmiron because it would cost me $324 a month and I can't afford that. Today I do feel alot better , don't know if I'm in remission or all the things that I do. I take nothing as of right now. I do occasionally have a small flare,but nothing like before. I have read that Prelief helps alot of people. You take it when you ate or drank something acid. I have been researching and found that a new drug called Rospitol, drug aqx-1125 is in phase 3 clinical trials. It looks very promising. Look it up and see what you think. I hope that you start feeling better soon. Be strong, this to will pass , my mother would tell me all the time. Good luck ,hope I helped.

    • Marylh
      Marylh pam47462

      Posted

      Hi Pam, I’m sorry you are going through so much. I am also in the middle of a very bad flare. I haven’t had it this bad since this all started..it will be two years in September. Nothing seems to be breaking this for me. It may stop for a bit but then comes back worse than ever, I’m so tired of it. I’m going to try those vag flora probiotics you mention. I didn’t think they might possibly help. I hope you’re feeling better. Btw, I take CBD capsules for this as I won’t do installations and have been given an anti anxiety med which does nothing so I stopped taking it. The pain gets so bad...unless I double the CBD dosage I get zero relief. I hope you’re doing better. 
    • pam47462
      pam47462 Marylh

      Posted

      Hi when I pick up the stuff at the store I will post the names of it for you.  I am going threw my old med's I have not given a chance and see if sticking it out helps I have a drug phenazopyridine the dr gave me 100.00 this problem from hell is pricey..  A little nervous about starting the oils  rather a cure.  I had some fresh aloe in the fridge going to try that till I can afford the freezed dried.  I did start one of the posters id of baking soda 1.00 a bag is in my price range.  I hope you find relief again.  I have not had a break from pain for over 5 months. 

  • Marylh
    Marylh pam47462

    Posted

    I am having a difficult time posting on this forum. Trying to type and it seems to have a mind of it’s own. I’m responding to you letting me know the name of what you will be purchasing for the pain? The vag flora maybe? I’ve seen them on various vitamin sites but was never sure what they were for. I will try standing on my head at this point if it helps. I wish this site was a bit more user friendly. I type a line and nothing happens. The the keys start to move by themselves, I know that sounds pretty odd, doesn’t it. Anyway, thanks for responding. I think today I will try the baking soda and the witch hazel idea. I’ve just about had it. Best wishes to everyone today, I hope it’s. A pain free day. And Pam, what did you mean about starting the oils? Sorry this comment. Is not what it should be, having trouble typing..
    • pam47462
      pam47462 Marylh

      Posted

      Hi just got back from the store and picked up a few things.  Your right about typing the forum does seem to have a mind of its own. i was a short of cash but managed to pick up a few things, hopefully to help with the vaginal burning.  I did see a dr too and he put me back on antibiotics, I never had this one but its another sulfa drug, boy do I hope this helps

      I found an item Provacare, for vaginal flora since my pap showed I don't have any.  Its a probiotic for the vagina inserted in a pill. Also I found a powder you drink cherry flavor Cystoplus for pain and stinging of the bladder.  Again I am taking the probiotic 50 billion for wormen.  I did try the baking soda, and fresh aloe juice yikes I not to sure about that one had to give it up for now the burning and spasms and pressure got  worse.

      This Dr thinks I may have a prolasped uterus thats why I feel the need to go all day long but not pee and way to much pressure.  About the oil its madicinal marrawana oil.  I should get it Monday or Tuesday I am so hopping it helps  I had to go to a pain management Dr not covered by insurance, legal in Canada under a Dr. care..  I will have to try the witch hazel next weeks shopping.  I hope you finds something that helps you let me know how you do.  I do pop in now and again..

    • brenda53218
      brenda53218 pam47462

      Posted

      Pam,

      If you have ic the cherry flavor cystoplus might cause a flair. People with ic should try and stay away from fruit , to much acid. Cranberries are a big no no. There are a few people who can handle it. Good luck , hope you feel better soon.

    • pam47462
      pam47462 brenda53218

      Posted

      Hi Brenda thanks forgot about that.  I did see that my urine is a 5 so does that mean acid?  Read I want to be a 7. Not sure about the IC diet and  how it works, any advise I am ears.

       

    • brenda53218
      brenda53218 pam47462

      Posted

      Hi Pam,

      Glad to help. I was like a babe in the woods when this all started. I never heard of ic. I thought it must be something with the big C. Boy was I glad it isn't. It's scary,its painful,its lonely,its demeaning at times. My way of trying to fight this is I watch very carefully what I eat. I don't drink anything but water and chamomile tea, boring yes but it works for me. As to food, I go gluten free as possible. I eat oatmeal with lactose and fat free milk in it. Again boring. It's really trial and error. What one person can eat or drink another person can't. Absolutely no fruit for me even blueberries. As to your urine scale, I'm not sure, I don't watch mine because it just causes me more anxiety. If I forgot something I'll add it later. Oh exercise for sure but nothing excessive, I walk. Look up excersies for ic . Hope this helps. Good luck, stay strong.

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