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worse since cysto/hydro

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  • worse since cysto/hydro

    I had a cysto/hydro done 3/14 and my pain and frequency has
    gotten so much worse. The doctor put me in the hospital 3/23-3/27 for
    the pain but since I am home the pain and frequency has only gotten worse.
    I don't know what to do? I can't sleep. I just need some relief.
    The doctors have tried several meds and we haven't found any that have
    helped me yet.
    Does anyone else get worse when they have had a cysto with hyrdo done?
    Thanks for any thoughts!
    Last edited by mlzippy7; 04-01-2007, 08:39 AM. Reason: spelling
    Current diagnosis
    Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
    Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro

    Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
    Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
    Interstim implants--8 plus surgeries for them.
    I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at [email protected].
    One day at a time

  • #2
    Not to long ago I ask the same question.. Because its been 4 months since mine and I have gotten worse..I used to never have pain, but now I am suffering all the time.. I wish I would of never had the cysto/hydro done

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3
      I am very uncomfortable for about a week down there, but then I do get better, infact, it has been 6 months since my last, and my frequency is going up again and pain level going up, so I am calling Monday, to see if I can schedule one in May before I go to New Orleans for vacation. I am sorry it caused you so much pain. I have had IC for probably 20 years, but only got official dx 4 1/2 years ago. I suffered so long, thinking I was crazy, it was almost a relief when they said I had IC, until I realized there was nothing that would take away the pain that I have lived with for so long.


      • #4
        I too have gotten worse since my cysto/hydro/biopsy, which was now 3 months ago. I also never had pain/burning until this, only frequency. I hope it gets better eventually.


        • #5
          I too was worse after my cysto/hydro and I wish I never had it done! I was a lot worse for about 9monts until it finally started to calm down.

          You are not alone and it does ease off in time but I guess no one can tell you how long. One thing i do know it that I will NEVER have it done again as its not worth been in so much for for 9monts

          you take care and stay positive ok hon
          Started with symptoms 2004 after a severe infection.
          Was diagnosed with IC Feb 2006 after cystoscopy.
          Diagnosed with vulvodyina and PN in july 2006.
          Dignosed with ME and IBS Oct 2006.
          Currently taking Amytriptaline 50mg, regular pain killers and birth control!
          Also doing IC diet and regular use of heat packs.
          Still struggling with IC and controling my symptoms so looking for some help

          also recently had abnormal pap, CIN III and just had LEEP done 2007


          • #6
            I have had about 8 or 9 of them, (had one just last week, usually have pain for about a day or two and then I am fine.) Am able to go back to work the following Monday. I think it was about June of last year that I had one and I was in pain from the time I had it till the next one (which was about 5 months later- which is unusual for me). Did the doctor prescribe anything for your pain? I know that hydros are one of the mainstreams of my treatments.
            good luck and hopefully you will get better.


            • #7
              I had a hydro/cysto/RMSO done March 15th and I have been in pain ever sine. I was in pain before but the pain is constant. When I start to think I am doing a little better and I start to do some work that I desprately need to do or start to become a mom I am back in as much pain if not more. I have narcotic pain meds but htey only work to a degree adn I am afraid to take to many of them for free of not haviing any more of them left, not getting any more and the ever popular getting addicted!!! My husband is wonderful. But he and his friend were teasing me today and my feelings got hurt today about me not doing anything. So I got up and did a load of dishes and started dishes and now i am in so much pain but I don't want to say anything to him because he was teasing and I know it. But he is right and his friend is too. What are we supposed to do? I work, but I have had to leave work early or call off or when I come home I am barely moving! I almost wish I had been put in the hospital after my cysto/hydro/RMSO, but it is too late and nothing is getting better. Plus, now the frequency of having accidents is daily. I have a 6 and 4 year old and potty trainging for the most part is over for everyone except for mommy!
              Teresa Swisher


              • #8
                Sorry you are in so much pain, sometimes it does take awhile to get out of pain, please take your medications as prescribe, if you take them the right way, you won't get "addicated". I know my eldest son is worried about me (he is 23- and everytime I fill my prescription, he wants to say something to me instead he says something to his father and I think his father had a talk with him about my medications and said there is a difference here between addicted and just taking them. That I will always need them till they find a cure for this.
                You said you work, do you work full time or part? What type of job do you hold? I work full time myself, (I'm an Admin Tech.) I'm lucky because I can monitor my workload and if I don't feel good afterawhile, then instead of going home, I can do stuff on the computer and sit with my heating pad (can you have one ( I know that all of a sudden we couldn't have anything electrical unless we had a note from our doctor so I got one, so now everyone has a copy from the Commissioner on down to the Office Manager). Or you can try the stick on heating pads they work just as good, you can order them from the ICN shop or get them at the store.
                I have to lay down when I get home because its at least an hour drive from the office, I think the drive tires me out more than the 8 hours of work!! usually I have to stop somewhere on the way home, the store, usually so a lot of times I don't get home till after 7p.m. and by that time I am so tired that I have to lay down - which means that I'm sound asleep by 8:00 so the family is usually on their own for dinner- but they don't starve- as I cook large meals on the weekends or extra food to have enough.
                (my kids are all grown up the eldest is 23- he is hardly home usually works nights and my youngest is 18, so they have been though this with me for most of their lives. (I was dx with IC when I was 32 (doctors told me I was too young at the time) I am now 47). One more thing, can your husband help with the children? Do you have any close friends/family?