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  • DMSO -heparin

    I the past I did DMSO but the pain was so bad afterwards I about went crazy. Plus I am one of the few unlucky people who have PGAD which they think is just the interstitial cystitis because it is all about extreme clitoral pain not so much arousal. So it made those symptoms worse. But about eight month of not getting them I am in big trouble. My uro explained to me then that I was at a different baseline. Just pain all of the time. But I am scared to go back to them and scared to try heparin again because I didn’t relief from that. I just want to cry. This is no way to live at all. I am taking buckets of AZO and my uro just keeps prescribing the same things abd is frustrated with me. I can’t take the oral meds. So they just think I am a nut case or something. Has anyone else had this happen to them?

  • #2
    DMSO isn't being used much these days. Have you tried instillations that contain lidocaine? Why can't you take oral medications? Is it a problem with swallowing? If so, there are some things you might try that will allow you to take them.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      yes, this is a terrible condition. Someday I might do surgery. Nobody wants that of course, but the endless pain gets old.

      Comment


      • #4
        It is awful. I can’t take oral meds because I can’t stand the side effects. The elmiron makes me have horrible stomach pain within a week and my hair starts falling out. With the hydroxyzine I can’t stay awake and I have tried cutting the pills and everything . And the amitriptiline causes extreme headache and dizziness but besides that it blocks orgasm which is a terrible thing for someone with PGAD. And I can’t even get relief from that anymore. Just extreme clitoral pain to the point that I want to throw myself off something. I do take 2300 mg of extended relief gabapentin but they refuse to increase it any further. I get that from my gyno.
        my urologist even mentioned clorapactin but I have heard that is just terrible and I really can’t mentally handle more. I have done two instills of heparin and lidocaine in the past which caused a huge flair up but I am so desperate I might do one again. I honestly don’t know what to do because it seems like I am so far gone and everything they do causes something else to get worse. If my religion allowed doctor assisted suicide I would do it. But unfortunately it doesn’t. I know we are all miserable so I am sorry for complaining. They won’t prescribe pain meds and I can barely stand it anymore

        Comment


        • #5
          Originally posted by Mysteryouch View Post
          It is awful. I can’t take oral meds because I can’t stand the side effects. The elmiron makes me have horrible stomach pain within a week and my hair starts falling out. With the hydroxyzine I can’t stay awake and I have tried cutting the pills and everything . And the amitriptiline causes extreme headache and dizziness but besides that it blocks orgasm which is a terrible thing for someone with PGAD. And I can’t even get relief from that anymore. Just extreme clitoral pain to the point that I want to throw myself off something. I do take 2300 mg of extended relief gabapentin but they refuse to increase it any further. I get that from my gyno.
          my urologist even mentioned clorapactin but I have heard that is just terrible and I really can’t mentally handle more. I have done two instills of heparin and lidocaine in the past which caused a huge flair up but I am so desperate I might do one again. I honestly don’t know what to do because it seems like I am so far gone and everything they do causes something else to get worse. If my religion allowed doctor assisted suicide I would do it. But unfortunately it doesn’t. I know we are all miserable so I am sorry for complaining. They won’t prescribe pain meds and I can barely stand it anymore
          If you opt to do another instillation, I suggest you ask them to instill the lidocaine first, then wait a few minutes before putting in the other ingredients. If lidocaine doesn't help, Marcaine might --- it works longer for me.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

          Comment


          • #6
            I’m so sorry! It’s horrible when your system is so sensitive to everything. Do you have a pain clinic near you that you could get a referral to? No one should have to live in that kind of pain. I agree with Donnas suggestion of instilling the lidocaine first. Also, have them numb up your urethra really well before they put in the catheter. And make sure you ask for a pediatric catheter. It makes a huge difference! Have they done a Hydro distention or a cystoscopy on you recently? I’m wondering if you might have hunnners ulcers. If you do, injecting steroids into the ulcers have been found to be very effective.

            Comment


            • #7
              Hi I am really sorry you are going through so much pain. Have you been to a physiotherapist to be evaluated? If not it might be worth going to get an assessment done, it could be that pelvic floor is adding to your pain?
              Also one other note, if azo isn't working for you can you try urelle/ uribel?? I found azo useless for me but urelle was more helpful.
              Diagnosed IC and PFD February 2016. Before this I had minor IC symptoms for 6 years.
              Other diagnosis: IBS, Chronic Sinusitis & Rhinitis, Iron deficiency

              Comment


              • #8
                I"m sorry to hear you are having so much pain. I could be doing better too. I was doing really well with hiprex, but not as well lately. I"m in it for the long hall with hiprex. I"m hoping maybe it can slowly fade this chronic undetectable infection which I believe IC is. If I can't get this pain under control really well I will get my bladder removed. Dealing with this pain is no way to live. My doctor says people get excellent relief with bladder removal. I'm a guy and he says I would need to get prostate removed also. The surgeon says if I remove only the bladder, and pain is still there which happens, removing the prostate afterwards is much more ugly. So it is just best to remove the bladder and prostate.He says when he does both at the same time, he can do it much more cleanly and save the nerves for erections. My main urologist who gave me the referall to get the bladder removed says my urethra below the prostate is not involved because I don't have burning with urination. I"m going to keep fighting, but eventually I think resolving the pain with surgery would be the next chapter in my life and would be worth it.

                Comment


                • #9
                  Thank you very much everyone. I appreciate you talking to me. I am so sorry for your pain as well. It definitely colors everything. I am in a bit of a catch 22 because the pain clinic in town does not handle pelvic pain. And the one I go to at the university will not prescribe pain meds. Not that I am a drug seeker but I have read that some people get on a low dose of something. I asked my family doctor why a pain clinic wouldn’t prescribe pain meds for someone like me. She said because it is a university hospital and they are afraid of being sued. It’s just nuts.

                  I appreciate you talking to me very much.

                  Comment


                  • #10
                    Even if the university pain clinic doesn't offer oral pain medications, it could be worth one visit to find out what they can offer that will help with your pain. I have an implanted pain pump that administers morphine directly to the source of the pain (which in my case is my back). It can be easier to have a pump approved because the dosage is set in the doctor's office and can't be adjusted by the patient.

                    I hope you feel better soon.

                    Warm hugs,
                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    Have you checked the ICN Shop?
                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    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.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment

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