No announcement yet.

should I or shouldn't I?

  • Filter
  • Time
  • Show
Clear All
new posts

  • should I or shouldn't I?

    If I am posting this in the wrong spot please forgive me I am a newbie here.
    I feel so confused and scared.

    I called in to my doc (obgyn) who dx'd me with IC 3 years ago with a flare question. I'm not having normal flares recently. Im extremely tired alot, I get flare pain, urgentcy and frequentcy for about 3 days and then im good but like 3-4 days later im back to pain,urgentcy and frequentcy again all on top of fatigue. Ive had 4 surgeries since November : gall bladder removal in nov, bladder hydrodistenion in april, hand surgery scope in may and in july major hand surgery.
    I wondered if it was just my body finally stressed after all the mess. but after telling my dr my pain med usage (half a 7.5 lortab a night sometimes a whole one depending) he started on how I need to try something else like Interstim or the instillations. Does this mean I was using the lortab wrong or is he just out of ideas and passing me off to a urologist?

    Ive read some info on both and frankly they both terrify me. Could anyone tell me some experiences with the Interstim? Is it better to try the bladder instillations? and does this mean that my IC is getting worse or transitioning as my doc called it? sorry this is long and probably the wrong thread but if anyone could help id be really grateful and appreciate it.


  • #2
    thank you. I called my insurance for a local uro who deals with IC and asked if I could get in this month. I got an appt for next friday. If i had gone with the uro my doc wanted i would of been waiting til november. thanks for replying and the hug - with all thats gone on this year and dealing with everyday life, i really think part of these odd flares are stressed induced.
    thanks guys this board was a life preserver last night. i felt very alone and not understood. even with my hubby reading the info here with me last night, its hard for him to relate to the fear of something new.



    • #3
      Like the others have said the Interstim is really a last resort after EVERY other possible thing has been tried.
      I wish you the best in whatever road you choose!!
      Good Luck!
      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


      • #4
        I totally agree with zippy! Interstim should be a last resort only! There are so many different meds and treatments out there. My uro suggested the same thing to me but i don't think I am ready to try that yet. The IC diet really helps alot of people too. Stress is a really big trigger for me. Your poor body has been through alot in the last year. I bet the stress of it all has to horrible for your bladder. I hope you get some relief soon and keep us updated about the new uro!