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New Here, Possibe IC, Need Help.

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  • New Here, Possibe IC, Need Help.

    ok so here is my story: my name is dawn, iam 24 years old, i have 2 children, and i had a complete hysterectomy at age 17. i have had many surgeries for endometriosis, along with a gallbladder removal and also my appendix, i have had a total of 23 surgeries in my short life span. i have always had problems with my stomach or so i thought it was my stomach, also had many many bladder infection or so i thought were bladder infections. it would feel like an infection then 2-3 days later it would be gone. i began to notice that almost every time i ate my stomach would swell up like a balloon. i began to have abdominal pain, when i bent over or got up from sitting, when lifting, or during intercourse. the pain got so bad i went and seen my regular M.D, she sent me to a gyno, and he said that the scare tissue that i had, had made my bladder shrink down in size, i dont know how accurate this is, but its what i was told. so i had my first hypertension done, i would up not being able to urinate for over a week on my own, i had to have 3 separate catheters put in so that i could go to the bathroom. after about a week and a half i began to go on my own. the pain eased up some after a few weeks, and it has been 7months since that surgery, and the pain is back with vengeance. my doc is thinking of preforming the surgery again, but i dont know if it is worth it or not,

    i have been reading this form, and reading all the stories of the people on here, and some have had to have it done many many times during there lives, iam just not sure if this is right for me, i have had so many surgeries during my life, that just thinking of another one makes me sick lol, iam not afraid of surgery since i have been having them since i was 15. iam just curious as to what else could be done? is there anything i should ask the doctor? because last time he didnt really tell me what was wrong, just sent me home with an IC diet sheet and told me to stick to it. i feel as though iam going crazy some days, not knowing, and having to make these choices on surgeries. could someone please give me some advice, or tell me what they did? thanks for listening to my story, i hope anyone else going through this is getting the help they need, and i will be praying for everyone on this network.

  • #2
    I kind of went through the same thing. When I first started having issues it was gyn stuff and my stomach. It sometimes take a dr some time to figure out what is causing things. I would try and find a new dr that treats IC. I've been to 3 different ones and they all have different approaches to how they treat IC. They could do a potassium sensitivity test, which is how I got diagnosed but it isnt necessary.

    Don't feel bad I'm in the same boat as you, I have had 12 surgeries and I'm only 20. My symptoms first started out as stomach issues, food sensitivity and a common UTI that never went away then along came the pain and Ive never been the same. I do know that because you have endometriosis it might be hard for a gyn or uro to separate that diagnosis because it can also cause pelvic pain and some overlap in symptoms. I have been checked for endometriosis 3 times because I have immense pelvic pain.

    I just had a cystoscopy with hydro done last month and I did not have that many problems peeing afterwards. I would try and find another dr who is more conservative in their treatment, like with meds, physical therapy. It is my impression that the only reason to perform that surgery again would be if it had helped you, but it seems it didn't help.

    Hope that helps
    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).