Pain from endo and I.C.I is killing me

Discussion in 'Fibromyalgia Main Forum' started by Jennifer, May 8, 2006.

  1. Jennifer

    Jennifer New Member

    Amy One out there with the dreadful pain of Endometriosis and Cistitis of the bladdar wall? The pain is horrible and makes you go nuts. Yes I have bad fibro too, also R.A. and Post Polio. Really bad feet. Please answer this if you feel this way too. My night meds are calling me to bed. Sherry from Ca.
  2. 69mach1

    69mach1 New Member

    ihopethis all goes away soon..

    i have only had to deal w/ovarian cyst when i was a teen and all the surgeries...then i had polpys in my uterus...had to have a biopsy...came out negative for cancer...so then they did laser and scaple scraping of the lining...so that relieved the dreaded month or longer periods at a time..

    no sistis of the bladder either...buthave had the bladder infections...so i have had the similar pains...can read my bio for all the other goodies...

    i just hope there is some releif in sight for you...

    hugs to you

    jodie
  3. Strawberry94

    Strawberry94 New Member

    I am sorry your IC is flaring, it seems like when it flares bad almost nothing helps. I get some help from taking calcium carbonate and also antihistamines, but many times just seems like nothing but time helps.

    I gave myself an IC flare over the weekend from taking a B vitamin capsule. I was up all night on Sunday. The B vitamins help me a lot energywise but they are very hard to take without a bad flare.

    The exercises from the book "Headache in the Pelvis" helped me some, but mostly diet helps, but that means lots of foods that I can't eat or eat that much of. For some reason laying on my stomach in bed helps some.

    I had IC since I was about two or three years old, only they called it Neurogenic bladder back then. Doctors often get like they don't want to believe I had it that long. I had IC for years before the other CFS symptoms that came on me hard at age 26. Who knows if it is related or not, just know that it causes a lot of pain.

    I am in CA too.
  4. EllenComstock

    EllenComstock New Member

    I have both IC and endometriosis. I am fortunate that I don't have as much trouble with the endo as I used to have. I used to have terrible periods-severe cramps and would get really sick. The first day of my periods were always spent in bed (when I wasn't in the bathroom). My doctor did tell me is that I would have had more pain with the endo throughout the month if I hadn't been exercising several times a week. Exercise does help keep the endo growths more flexible, thus causing less pain.

    Do you have a gynecologist who is knowledeable about endo? If not, I would start doing some research.

    Now about the IC. I, too, suffered with this for many years and lots of sleepless nights with running to the bathroom about 10 times a night. I will never forget how terrible that was.

    A couple of years ago I saw a urologist at the Cleveland Clinic who recommended a product called Prelief. He gave me some samples. It comes in tablets or powder (I prefer tablets). It is over the counter and the tablets come in bottles of 120 for around $10.00. If your drugstore doesn't carry it, they can probably order it. I order mine from CVS.com. If you order more than $50.00, there is no shipping charge and it comes right to your house. That is so convenient, especially when you are feeling so bad.

    What Prelief does is neutralize the acid that is so irritating to the bladder. Please give this a try. My doctor said that it will not affect any other meds you are on and you can take as much as you want. You will probably have to play with the dosage at first. I started at two tablets per meal and went up to three since my IC was severe. Prelief is just calcium and magnesium. I've take these as supplements for years, but they never helped my IC. The Prelief has helped my IC by about 80%. I still get flare-ups, mainly when I get stressed out, but I am so much better now. And, no, I am not a sales person for Prelief-just an IC sufferer like you who wants to help others in the same situation. How I wish I had known about this product years ago. Also, remember to take it with any drinks between meals like coffee, tea, carbonated drinks, fruit drinks. All of these will irritate your bladder, too. You can also take it at bedtime. I also carry a bottle in my purse for when we eat out.

    I wish this product was advertised more. I hope you give it a try and it helps you as much as it has helped me. A few people here that I recommended this product to have written me back and said they felt better. Good luck.

    Ellen
  5. caroleye

    caroleye New Member

    I had surgery for my endo in the 80's; along w/danazol??

    My IC hit me about 4 years ago, and I finally learned to manage it through the IC Puzzle board.

    Have to begin with going on an all alkaline diet. Then there are things to avoid, and add.

    Great site!! Pain is incredible, so I hit my program the minute I feel it coming on.

    LIGHT*************carole