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  • How do we get thru this?

    Although according to my urologist I do not have IC but rather trigonitis and a narrowed uerethra which he treated with a cystoscopy and a nightmare uerethal dilation, I believe I have IC.
    It started last fall with what I thought were UTI's. I kept getting AB's for them although all cultures were always clear but they were very slow to go away. Azo helped and I stayed pretty sane. Then in January I started a downward spiral that finally landed me in the ER. The constant tearing urge to go and stomach tenderness drove me into panic attacks that came in waves. They gave me a shot of Ativan which didn't help. Later they gave me a shot of morphene even though I didn't think pain was my biggest complaint. 30 seconds later I was sobbing in relief. I stayed on xanax and oxycoden until I saw the UR. Now although my urge and frequency has diminished, it feels like something is in my rectum and is excruciating. I should point out that I had to have my colon removed 17 yrs ago and I no longer even have a rectum. My urologist doesn't have any idea why that would be and dismissed it as having anything to with my other symptoms.
    The anxiety attacks and pain are killing me. The meds are the only thing that help but I'm so fearful of running out that I try to go as long as I can without, until I snap. I don't seem to have the agonizing pain that some of you describe in your pelvic areas, just tenderness and tightness. How do you cope? I can't even leave the house. Do I need a different doctor? Does anyone cry all the time?

  • #2
    I'm thinking a second opinion would be a good idea. Are you following an IC diet? If not, I think it's worth a try. The link to the food list is in my signature below.

    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


    • #3
      yes you need a second and possibly a third opinion. until you see a new uro stick with the ic diet and try azo for bladder pain. and try to take one day at a time for now. i have been there i cried everyday for three months brfore i found the right uro.hugs and prayers sent your way.
      <center>
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      </center>

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      • #4
        Azo no longer does a thing for me but the ic diet has helped greatly with the urge and freguency, but how do I help with the pain in the rectal area? I've tried tylenol, ibuprofen, warm baths, heating pads, and sitting with pillows arranged so that my weight is not on that area. Even taking an oxycodone (I'm terrified of becoming addicted to narcotics!) doesn't help for long. Any ideas?

        Comment


        • #5
          What helped for me was seeing a physical therapist to help with the tight muscles. They do a massage called myofascial release. Someone who specializes in pelvic pain is the best. Definitely look at every ingredient in foods. Your bladder may not get the chance to heal because of one little preservative. What I had to do is break things down to one thing at a time until I knew what was I.C. friendly for me. The I.C. diet on here is great..but before I even knew about this list this is what I had to do. And since you do not have the reassurance of a diagnosis for I.C. there may be other things going on here. Some people can't have dairy or are lactose intollerant, gluten intollerant, ect.

          As for coping mechanisms...for me it was affirmations...your own are the best...because it is so hard to think positively when you are in so much pain. Also getting into a movie takes your mind off the pain. I also exercise in a pool...it is gentle to your body and even little movements keep things moving. If I get no exercise everything bounds up. I also take restorative yoga which has guided imagery, meditation, and gentle stretches. I have been dx with moderate I.C. for 3 years and still have never been in remission but I keep trying. It is hard.

          Also if AZO doesn't work anymore ask for pyradium..100mg or 200mg if you have to. It really helps my pain. AZO is a lot weaker. Hope this helps and I hope you get better soon. Take care.

          Comment


          • #6
            justshootme -

            I landed in the ER last October with the worst headache of my life and severe hyponatremia. It turned out I was allergic to gluten and had occipital neuralgia which crippled me for 5 months! When all this happened I was without a job, had no health insurance and developed panic attacks from all this.

            Ask your doc for Xanax or Klonopin. I've been taking Klonopin 1 mg/day and it has helped tremendously. That plus lifestyle adjustments, stress reduction etc
            Dg. with IC 2/15/10

            Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

            Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

            Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea

            Comment


            • #7
              I looked up trigonits because I honestly didn't know what it was. I saw someone else that posted on here and said the trigonitis and IC were the same thing. From what I read they are not the same in some ways. Such as where the problem is within the bladder, although one description seemed to say that the name trigonitis tended to be a catch all name. From what I read though, I would certainly think that the ic diet and some other things we do for help should help you. My suggestion as to the other painful feeling is that you see a gastroenteroligist, do you still have to have any checks from your removal? If not maybe you could call one and tell them what is going on to see if they feel it would be worth your time coming to see them. Maybe as an alternative to that try an internist that could possible know what type of Dr to refer you to.
              Something is certainly not right and you do need to keep pushing until you find an answer. I hope you are able to get help soon.
              Sandra
              Link to the patient information, everything from What is IC? to Disability
              http://www.ic-network.com/patientlinks.html

              American Urological Association Clinical Guideline
              Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
              http://www.auanet.org/content/guidel...ent_ic-bps.pdf

              Comment


              • #8
                Thanks, I have some Xanax now and it does help a lot. I feel bad complaining when I read some of the other stories on here because I have a great husband and I don't need to go to work. I've had so much in my life that I always dealt with just fine mentally before I was married and had to work. I don't understand why I've snapped now.
                Thanks

                Comment


                • #9
                  A lot of people say that the stress made the pain worse. It was true for me. I deffinatly believe that people with this pain have Post tramatic stress syndrom. The fear of the pain is horrible. And then the fear of going to the Dr. so they can treat you like a moran. How can Drs be so dumb about what intense pain does to people. I am currently seeing a Gyno-urologist. He helped with the pain in my urithra. Now if I can get something to help the bladder pain I'll be a happy girl. I do know that yeast played a big part in the pain and the antibiotics made that worse. I avoid antibiotics at all cost.


                  Hang in there. You aren't crazy the Dr.s are.

                  Comment


                  • #10
                    You ask if anyone cries everyday. I do. I don't know if there has been one day that I haven't cried since going to the ER and finding out that I have IC. This is a huge shock from the way I used to live. I was healthy and happy and now I'm not. I have so much stress now that I just feel I can't take anymore. I agree with post before mine. This illness causes Post Traumatic Stress Disorder. Just waiting for the pain to hit is enough to drive one crazy then add on ALL the people who don't understand and treat you like you are exaggerating. Not to mention the frequency and urgency to go to the bathroom. I carry around extra clothes (of course they are loose fitting) and extra travel johns to pee in if I am in the car and can't make it. Although, my frequency and urgency have gotten better than the first year - it is always in my mind how bad it can come back. Now I have other developing issues - why???? Frozen shoulder (also painful, especially at night), IBS (also painful and stressful). I have gluten and dairy intollerance and don't eat much at all now becaus so much causes pain. No one can understand this. I am home all the time now never going out except for the dr. I used to love being with friends and eating, laughing etc. I can't watch t.v. anymore or people eating it is too upsetting. I miss eating. I miss life. I miss what I had. I am trying to decide what procedure to try next after trying so many that have failed. I tell myself to keep hope, but that is pretty hard when all you feel everyday is pain and suffering. I don't know how people hold it all together with all this going on. I am glad that you feel you are not "as bad" as others, but you shouldn't compare yourself to others. Your pain and struggle is real and you should not think that you don't deserve to be upset by it. You deserve to feel exactly how you feel and complain all you want. I really hope that you can find some peace with this and feel better. There are many people who really care on this board and want to help.
                    Teresa

                    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                    Comment


                    • #11
                      I agree with Snowden1. The intense daily pain associated with IC interferes with daily life and it's depressing, to say the least. I'm thankfull for every day with less pain, haven't had a painless one yet.

                      I too, used to be very active, run 6 days a week, hike etc. but this illness changed everything. Unfortunately, I drown my sorrow in food. Yes...I overeat and gained 10 lb within this last month.

                      Everything just seems meaningless now, life will never be the same. My uro says this condition is chronic and I better get used to it. Easy to say
                      Dg. with IC 2/15/10

                      Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

                      Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

                      Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea

                      Comment


                      • #12
                        Hope you are feeling better now that your anxiety is more under control. Sometimes hormones play a role in anxiety/panic attacks as well. I know when I was premenopausal they hit me hard and lasted for a few years, and then just disappeared.

                        Have you looked at prudendal nerve entrapment? Give it a google, it has many of the IC symptoms as well, and is more common in those who have had any type of abdominal surgery. A PT could help you with that also. Good luck to you, hope you get to the answers you need and deserve. Jill, wife of Bob

                        Comment


                        • #13
                          Thanks everyone who has commented. To Snowden1, I had a frozen shoulder. It is very painful. It lasted about 2 years and I still can't raise that arm very high or lay on it. Luckily, the really painful part is the freezing up part and that passes after the first few months.
                          I've seen my new (we just moved here a few months ago) regular doctor and he seems very keen to track down this rectum pain. I'm having a pelvic ultrasound next week and if that doesn't show anything he's going to MRI my entire spine. He thinks everything could be nerve related since in the last few years I have had back pain, sciatica, and frozen shoulder. I too found info online about the pudendal nerve and have found some relief by sitting on cushions that support my weight on my cheeks and thigh and not the middle. Isn't it strange that a nerve can go haywire and make you positive that you have to pee? Even stranger that it absolutely convinces me that I've got something in my rectum even though my rectum was removed 17 years ago? It would be better than IC I think because then I could at least eat...

                          Comment


                          • #14
                            Hi,
                            So your shoulder is better now? My right shoulder did the same thing. I kept exercising it and it got better. However, then it started in my left shoulder. I still have this cracking in my right arm but can lift it and move it fully. My left arm still has limited mobility. But, after I sleep I still wake up with both sides still hurting (but the left is the worst). I do think there is something going crazy with nerves or my immune system - or possibly because of lack of nutrition from not being able to eat hardly anything.
                            Teresa

                            We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                            Comment


                            • #15
                              I also have a shoulder problem, but X-rays and MRI diagnosed three spurs so there's a reason for my shoulder pain. I start physical therapy tomorrow --- will see if that helps. If not, it's going to be surgery to remove spurs.

                              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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