No announcement yet.

Newbie with IC and Endo

  • Filter
  • Time
  • Show
Clear All
new posts

  • Newbie with IC and Endo


    This is my first post. I was just diagnosed with IC 2 weeks ago. Here’s some info:

    I was diagnosed with Endometriosis last year during a laparoscopy, but have had symptoms of it for 13 years. For the last year I suffered chronic pain and kept complaining about it to my doctors, but they kept saying that it was all in my head. I finally found a specialist in my state who treats endo and he did a lap 2 weeks ago to remove all the endo deposits he could find. Since I had endo removed by a specialist, the chances of the endo coming back is very slim.

    The doctor also knows about the connection between endo and IC, so the urologist he works with did a cystoscopy of my bladder during the lap. (I didn’t know anything about the disease before then.) He found a pretty bad case of IC and performed hydrodistention. During the surgery, he was cauterizing a bleeder in my ureter and left the heating element on it for a second too long, which slightly burned my ureter. Because of that, he put a stent in it that goes from my kidney to my bladder. Because of the condition of my bladder, the stent has been bothering it and I ended up in the ER a few days after the surgery with a fever of 102.7. After 10 hours of tests, they determined the stent is just irritating my bladder and causing a fever. The stent gets taken out next Monday.

    Anyway, I’m totally new to IC and don’t know much about it. I have a million questions and concerns, but the first one is about pain. Since I’ve spent the last few years chalking my pain up to endo, I don’t know what a flare is. How do I tell that apart from the endo pain? How do I know if it’s a food that’s bothering me, instead of something else in my pelvis? I’m even more confused because of the stent, because I don’t know if that’s what’s causing pain or if maybe it’s a flare. If any of you could give me tips or suggestions, I’d greatly appreciate it.



    Allergies (Claritin)
    Anemia (iron supplement)
    Asthma (albuterol inhaler)
    Bilateral hearing loss (hearing aids)
    Chronic migraines (amitryptiline, midrin, special diet)
    Chronic rhinitis and sinusitis
    Endometriosis – stage IV (lapex surgery done by specialist 3/07; now pain- and symptom-free!)
    Other treatments tried: surgery, 13 birth controls, Lupron (poison! ), and Depot Provera (the worst thing my body’s ever gone through! )
    Interstitial Cystitis (Elmiron, Tramadol, Darvocet, IC diet)
    Knee problems (ballet-related injury – no diagnosis 10 years later)
    Scoliosis (>10 years of chiropractic treatment – none currently)
    Seizure (4/03)
    Surgeries: 6/95 – maxillo-facial surgery to realign jaw; currently have 8 screws in jaw
    2/06 – laparoscopy with excision of endometriosis and ovarian cyst, appendectomy, hysteroscopy, D&C, removal of uterine polyp
    3/07 – laparoscopy with excision of endometriosis, hysteroscopy, cystoscopy, hydrodistention, insertion of stent in ureter

  • #2
    to the ICN, Allison. So glad you found us.

    You can find alot of information about IC and the Diet in our ICN Patient Handbook. You can find the link to it at the top of this page under the big blue and green banner.

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    Link to the ICN Patient Handbook:

    Link to the IC Diet:

    IC 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
      Glad you found the site. You will found lots of help a this site and good comfort when you need it.
      Interstitial Cystitis Stomach problems
      diastolic dysfunction
      vascular insufficency of left leg
      pelvid floor disorder
      bread cancer - 5yrsl. remission
      swollowing difficulty
      lots of doctors
      lots of med.

      Keep your eyes on the Lord and he will direct your paths.


      • #4

        Sharon gave some good advice the IC handbook has alot of good imformation in it..
        I also have endo and IC when I have a IC flare I seem to pee alot more and burn.. I also have like a knife stabbing feeling in my bladder.. With the endo the pain is more lower and near my overies..

        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.