No announcement yet.

Menopause hell

  • Filter
  • Time
  • Show
Clear All
new posts

  • Menopause hell

    Well yesterday a IC flair started and today its only getting worse. I have noticed that when Iam off all hormones, I do not flair that bad. My new gyno tried me on the hormone patch, I loved the fact that it helped me where I wasnt running to go pee all the time, thats the first time any drug has helped with that. Unfortunately the dosage was to low and it didnt help much with the hot flashes which I suffer from horribly. I also 2 1/2 weeks on the patch started a period from hell. ( I have a uterus, no ovaries or tubes) the bleeding was so bad I was going thru the big overnite pads every couple of hours, and the cramps were killing me. I see my gyno today for a ultrasound and Iam hoping he will put me on the max dose of the patch(we started out on the lowest). I just have to drink alot of water and not pee before the test,, that right there is going to be soooo painful for me. I saw a really good uro last spring(his rep is one of the best) but he would not presribe any meds for me at all, he said he didnt believe in them and only wanted to do PT. My insurance covered very little of the PT and left me with a HUGE bill, so doing PT isnt possible for me. I asked him about teaching me to do the instills myself and he said no, whenever I needed one I just called the office and they could get me in the same day for them. Who in the hell feels like driving for a half hr in heavy traffic for an instill? he might be one of the best, but only for the rich people who can afford PT and to be constantly running to the doc for instills. My current gyno is a good doctor but he doesnt feel comfortable prescribing any meds for my IC. I just feel stuck. I called my very first uro(who actually diagnosed me 20 yrs ago) but they have a new way of weeding out patients I guess. The nurse gave me a questionaire over the phone and said if he felt that he could help my case he would take me on as a patient, she called back a week later and said he had no interest because IC is so difficult to try to treat. So now I have no uro. I honestly dont know what to do. Iam in pain, my gyno feels bad but can only give me painpills and Iam just lost as to what to do now. Any suggestions??
    IC and IBS
    Lost both ovaries due to endo
    Dealing with menopause
    1 Bladder distention

    evening primrose

  • #2
    So sorry you are in this place! Have you checked the Dr list in the ICN to see if there are any other uros listed for your area. Also try to post on the thread for your state and see if you get any responses there. I hope everything goes well for you at the gynecologist today, maybe you could see if he would perscribe you something to get through this rough patch. You could also check with your personal care physician, sometimes they can be of help.

    Wishing you better days ahead.
    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      I'm pretty sure I've seen some posts about an incredible Uro at U of Mich...maybe its on the referral list. Hopefully another person from MI will respond. I have to say I think thats pretty crappy that all of them are basically turning you away. Your first uro who doesn't want to do meds, what kind of answer is that? I have IC, def don't have PFD. They gyno I kind of understand but how hard is it to prescribe the top things that might give you some relief? And the first uro you saw years ago, that is sad that he won't treat you based on a questionnaire. You have really had some bad experiences there and I hope you find someone who will help you.
      Good suggestion on checking with your PCP. Thats how I found my urogynecologist. Have you looked for one of those? They specialize in womens pelvic issues so any one of them should be able to treat IC.

      Hope you get help soon.

      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link:
      AUA 2011 Guidelines to diagnosing and treating IC overview-
      AUA 2011 Guidelines to diagnosing and treating IC PDF:
      Great treatment flowchart on page 19 of the pdf