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  • Are cystoscopies repeated?

    I had a cysto under sedation and I believe it included hydro, and two biopsies of very interesting looking lesions 11/4 and despite the meds I still think I am worse. I don't think the biopsies are healing well. Is there ever going to be a need for me to ever have this again?

  • #2
    Re: Are cystoscopies repeated?

    Unless you develop new symptoms or if you don't heal within a reasonable length of time, you probably wouldn't need more biopsies. You may at some time need to have another cystoscopy if you develop new symptoms or if you don't heal after a reasonable time. Are you following an IC diet? Have you been checked to be sure you don't have an infection? I suggest you find out exactly what was done, then post again.

    I hope you feel better soon.

    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
      Re: Are cystoscopies repeated?

      There was no infection, and I don't plan on ever contacting that Urologist again if I can at all avoid it. The new urologist he referred me to see that is supposedly an expert in IC is working within the same larger practice in Philly but she works from a different location than he does. I wasn't able to get an appointment with her until 12/22 which is more than a month since I last saw him. Luckily he gave me refills on the meds.

      I am not following any IC diet. I have looked at it and it overwhelms me with the vast amount of foods I don't like to eat that are on the safe list and then the equally vast amount I do like on the potential irritant list. I'm probably about the worst IC patient there is because I hate drinking water and I always have disliked it. I think the taste is always horrid and especially with drinking it on an empty stomach it always makes my stomach feel yucky. I also don't seem to function well at all without caffeine and I am very needed to function for the rest of my household. I was hoping the Elmiron would avoid me needing to make drastic changes to my diet and drinking habits as I already have a Vitamin D deficiency and I don't want to make any of that worse either. Thank you for your input.

      Comment


      • #4
        Re: Are cystoscopies repeated?

        The diet can SAVE some people. It has never made a difference for me, possibly because my pain could be PFD or nerve issues, but MOST people with IC NEED the diet to stay out of pain! I would give it a try, just to see! If it helps, it could be well worth it.

        Comment


        • #5
          So these days I am trying to avoid anything that I think would set off the IC symptoms. Which means I'm eating very little, so I'm losing weight. There are other issues too which aren't related. But I just wanted to return to my original question. I reported in another thread that my Urologist i began seeing in 2015 suddenly left the practice and I had to find a new one during the Covid Crisis. I have done so and some of what she is doing and saying is helpful and some is not. Basically she is unwilling to prescribe anything addictive no matter what. She does suggest to seek pain management offices for that. She offers to do a prescription for valium suppositories but those are not covered by insurance and have to be compounded. And need to remain in the refrigerator. Whereas if I am out and need additional help the oral medications I can take as needed but I can't carry a suppository or use it unless I am at home. So I've become resolved to the idea of seeing pain management because Fibromyalgia and Sciatica and IC and IBS all fall into reasons I am in need of more help with pain than some other people. I don't mind being monitored. I fully admit my family history is full of addiction, however I am very stubborn, I have been taking the oral valium for 5 years and I have never abused it. I even tried to stop taking it when I was initially trying to use Medical Marijuana and found it was not able to replace it. I discussed that with the Urologist that ended up leaving and she let me know I had misunderstood because she just wanted me to be careful about taking both not that I should stop the Valium.

          But part of my process to find this new Urologist included going to a nearby office and seeing a doctor that works with her (she does the treatment plan and when needed you see whichever one of them is available at the time). But he did specifically say legally he had to look into my bladder. So I did have to have an in office cystoscopy and it was not pleasant. I was assured he would go very quickly and stop if it was becoming too painful but I do think he tried to push further because he thought it would "work". But it didn't. I don't think he was able to see really anything at all. I have a feeling it was more about billing my insurance than a legal or ethical situation. But aside from not doing it at all, if in fact he was required in some way, not going to the hospital at the time was a good call too.

          I have a new appointment again because of a misunderstanding about the prior medications I was already on. I was taking Tamsulosin at 0.8mg which is two capsules and when I needed a refill she sent it as just one and since she was trying to see what we could add to try to make things better, she had added myrbetric to use with Detrol LA and then had just prescribed hydroxyzine. My other urologist didn't want to go to the hydroxyzine because I already take Allegra/Xyzal and it seems doctors outside of the allergy field are unaware that adults can take multiple doses of the over the counter antihistamines that are meant to last the full day. So adding a different one that is used for many off brand reasons (anxiety included) seems to be a lot more safe than other doctors realize. Benadryl can be very dangerous, but I'm allergic to that...yep....allergic to an antihistamine. So when I got a reduced dose of something I was already taking it seemed like a mistake or something overlooked in my records from the prior doctor. I hope when I have the new appointment we can really make sure that my medications are updated appropriately. I brought in a pile of printouts because I have documented when I had a new doctor visit for anything if a new medication had been added since the last time. So it's not accurate enough to go by the exact dates I started or ended another medication but it does have dates for each time I changed the spreadsheet and I thought going over that would be helpful to see what I have tried at what doses and how long ago would be helpful. And knowing why I stopped certain medications. I was taking both Elavil and Pamelor together, because a visit with an orthopedic doctor added the Pamelor even when I brought up I already had Elavil. But over time I was finding I was sedated a lot and lethargic and could not muster the energy to do household chores or even go see a movie I was looking forward to. But sleeping at night was not restful. I was sedated but having odd dreams and feeling pain throughout being asleep, just unable to really wake up fully. Now that I don't take those or Duloxotine I feel like I'm pretty much in the same situation with pain levels but my sleep is more restful instead of just being sedated.

          But again I got off topic. I didn't have new symptoms I was just seeing a new doctor, they had my records, but still insisted I did one in office. I do not think I will ever agree to doing another without sedation again because it is not something I deal with well. I've had far too many catheter experiences that were traumatic and I don't think that is helping.

          Does anyone else have stories about new urologists insisting to do the cystoscopy for themselves?

          Comment


          • #6
            If it had been quite a while since you had a cystoscopy --- or if there's still doubt about a diagnosis, I could understand a new doctor wanting to do another --- is the recommendation for a cysto with hydrodistention in a hospital? Some doctors feel that's the only way to diagnose, but there are also doctors who will diagnose based on symptoms and ruling out other possibilities.

            I can better respond to the suggestion that you see a pain specialist. It does sound like you have quite a few things going on --- and I can relate to that. I have seen a pain specialist for several years and I have to say that, even if I can't do everything I could before I developed pain conditions, I am able to have a life. Pain specialists have privileges which other doctors don't --- I have an implanted pain pump, plus regular oral pain medications.

            I hope you will find relief soon --- I know that before I had effective pain control, I spent the majority of my time in bed.

            Sending warm healing thoughts,
            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


            • #7
              Thank you Donna, the biggest obstacle for me is making the calls to set up appointments with another new doctor. Covid makes everything harder to do. But I have three doctors as recommended by other medical professionals I trusted.

              As far as the cystoscopy it had been 5 years and my understanding is that the hallmark of IC is Hunner's Lesions and the doctor that did mine under anesthesia in 2015 found two that he feared were necrotic. They were biopsied and were not necrotic. After that he referred me to another urologist within the urology group but she worked in a different office location than he did. She had taken care of me for another 4 ish years and one of the last things she did was a hydrodistention also under anesthesia. It resulted in my bladder just pouring blood into the solution. She was taking images and I asked if I could have those for my records but she said the printer was broken, but when I was next in her office and she pulled up my file they had the photos available and I think there were between 3-5 which just showed it getting insane. She told me afterwards to not take any medication that had blood thinning effects until I had been without any blood I could see in my urine. Well actually she gave the information to the person that took me in and that person did not relay it to me in time to stop me. Any time I have a procedure or any reason to have to avoid medications, I take them with me to then take them afterwards. So I had already taken Elmiron. I thought it sounded a bit counterproductive to not take it but the small blood thinning effect it had still worried her.

              Then after she suddenly left, and I found a new Urologist, he saw me twice, and was able to get my records in full as far as I know, including the report of the Hunner's Lesions and biopsies and the more recent hydrodistention details. But he said he had to look into my bladder himself. I do not know if the hydrodistention confirmed the Hunner's Lesions were still present but the Urologist that did that procedure had told me that sometimes they never heal. I do not know if that was what the new Urologist was trying to confirm or not, but I was not comfortable with the idea, but I weighed not having a Urologist against doing this procedure in office for the first time (and only time, I will not consent to it without sedation ever again because it was excruciating), it didn't seem like a good idea to walk away from the new urologist. Then it was when I found out he worked in conjunction with someone else in another office. He called her and set me up with an appointment like a week later with her and I was able to that one through a zoom video chat. She then said she wanted to add medications to see if something helps, she asked me what is the one symptom I wanted to focus on. I think I said frequency. Since then I've also been in office with her, she added a second medication but there was confusion about one of the medications I was already taking at a higher dosage and when I asked for refills she gave me half the dosage I had been taking with the Urologist that left the practice. So after several conversations over the phone she agreed to give me more but I am seeing her again tomorrow so she can make sure my blood pressure is fine because the higher dosage seems to be worrisome for her. It could be due to various other medications I also take, or just a common side effect of that medication, the office staff was not clear when they made the appointment.

              Generally though I have found when I am in the office with the doctor I get favorable responses but once I no longer have the doctor's ear, the front desk staff seem to react like nothing I am saying makes any sense to them or that they should be doing anything. I have assumed it is a way for them to not need to consult with the doctor for every phone call to the office especially when the doctor is seeing other patients. I understand this, but it makes things a lot harder to deal with.

              So I am sure the pain specialist will be an asset as soon as I can manage the appointment and such. I'm slowly realizing that for me the urgency is always painful and drives the frequency and to make it worse if I am in a situation where they want a sample that they won't allow me to bring from home, trying to go when I don't have the urgency triggers pain too. I have said I feel often like my urethra has additional pain of it's own but all the times it's been looked at nothing has seemed out of the ordinary. I hope the new urologist will help me figure this out.

              I still have to get the eye exams as well. I am pretty sure she won't be pleased I haven't done that yet but understanding that everything is harder these days.

              Thank you for all your advice and encouragement. It is always appreciated.

              Comment


              • #8
                Thank you for responding. I hope you will get the help you need to feel better.

                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


                • #9
                  Well, there was an attempt several months ago to do an in office cystoscopy which I mentioned with a Dr. Harkaway. He had told me it would be very quick and he would stop if it was too painful. He tried to see if it would work a little better and didn't stop exactly as soon as I felt he was claiming he would but he got basically no visibility. He then let me know he allows a different doctor, Dr. Schellato to make the treatment plan and then he follows it so I can always schedule appointments with either of them. His office is closer to my home. Her office is next to a hospital and the way the building is made you have to walk through the hallway all the way to the very end to get to her waiting room/office area. Which makes it nearly impossible to deal with social distancing but obviously we have to do what we can. And try to make as little contact as we can wit others when we cannot stay 6 feet away. There's a very crass but true comic drawing about comparing wearing a mask and wearing underwear. When I was in the office this past week that kept coming to mind because this one older guy had a mask that was very form fitting to his face but he kept lowering it so his nose was out of it. I own a few but all of them do not have any sort of way to make them stay up on my nose, and they are not tight against my face. So I constantly have to pull mine up. But I do that.

                  Either way at this point after me explaining a few things and bringing up prior discussions we had at the other two appointments, Dr. Schellato wants to do another cysto, to see if I have Hunner's Ulcers still that need to be cauterized and I am guessing she is wanting to make sure something else isn't going on. But she does not want to give me anxiety about bladder cancer or other issues. Doctor's, even the good ones, never seem to realize that some patients yes go off the deep end because they self diagnose over the internet and are convinced either they are fine or they are dying and both are problematic. But other patients can be educated, and look for new information to know what questions to ask.

                  But at this point, I am guessing things have been worked out so hospitals are safer and so doing this under anesthesia is the better plan so she can get a good look and do anything she feels needs to be done while I am not in excruciating pain.

                  She added Hydroxyzine for the purpose of trying to help me sleep but a 25mg dosage is not that much. So when I reported that no it wasn't helping me sleep with less pain she said to stop taking it. And now increased Myrbetric to it's higher dosage.

                  But she had asked in prior appointments when I last had any imaging done and it's been well over a year for an ultrasound. And a while since I had the Hydrodistension that turned out to not be such a great idea. But I did mention to her that when I had the last ultrasound the tech that was doing it made me aware I just had a blood clot floating around in my bladder. Another one turned up later that day but never before then or since. I've also had two situations where just randomly everything got very painful and bloody. I was beginning to think it was either bladder stones or possibly, because everything is much more sensitive with both IC and Fibromyalgia maybe it was just a grit that most people pass without any discomfort. But I sent a sample when it happened the second time and the doctor had it analyzed and there was no sign of any infection or other issue aside from having visible blood in my urine. It was suggested that it could have just been a flare up. But I've been living mostly in a state of feeling like I am already in a flare up and cannot calm it down so that getting worse was not so great.

                  So I am getting the 4th cystoscopy in 5 years. The initial ones was in November of 2015 and there was no doubt of the Hunner's Lesions and the diagnosis. Then a while later there was the hydrodistension which did not work out well, and more recently the attempt in office...things were inserted but I could not handle the pain to allow enough to be done to get a good look, and on November 2nd I'll have the 4th one under sedation again.

                  I was extremely upset when I had my first one because the Urologist that did it was not an IC specialist and for some reason he didn't just refer me to the doctor in his practice that was a specialist sooner. I can only guess he wanted the surgery for himself. But even though the hydrodistension did not go as well as we hoped, it was far less painful that the initial cystoscopy. I did warn Dr. Harkaway that I felt it would be too painful without any sedation but this was mid Covid crisis when everything was metaphorically on fire so he was making sense with wanting to avoid an OR at that time. But now things seem to be under control, as best they can be.

                  I have very little hope that I will ever be able to lead a "normal" life. Hopefully I can figure out the best ways to manage my various diagnoses and it not be awful all the time, but I have not worked in a long time outside the household. So I am going to need to file for disability. I hope that isn't drawn out for too long but I've always been told you get rejected initially every time. But I worry that the level of medical care I can get while using insurance through disability will be far too inadequate. But at least if this cystoscopy shows more information one way or the other this new doctor will be able to confirm the severity or complications that IC is causing me.

                  I just wanted to post again since it was originally my question. And so I guess now I have more answers. Sometimes doctor's apparently want to do it so they see inside the bladder themselves if you have to change doctors. And I think if your symptoms don't seem to be under any well managed treatment then doing another one to see what is possibly causing further complications. I wasn't sure if 5 years is considered a long time between them.

                  So I guess now I know it depends on the IC specialist.

                  I hope everyone is safe and I appreciate the support and encouragement.

                  Comment

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