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  • Botox rebound?

    Hoping someone out there who's had botox before can help me.

    I had pelvic floor Botox injections about 7 weeks ago. I've felt great since, better than I have in three years. I haven't had any urinary retention, minimal pelvic pain (it was bareable without any meds). I thought the Botox was the best thing ever.

    Now for the past 10 days I've had a lot of pelvic pain that has progressed to urinary retention and pelvic floor spasms. I am in agony and each day is getting worse.

    I've been in touch with my urogyn who had me try bladder instillations (I do them at home), pyridium, heat etc. Now that I've had no improvement after several days she thinks it's "rebound spasms" from the Botox. She's starting me on Valium for the spasms and wants me to continue with the Pyridium over the weekend (because I LOVE orange pee She's going to see me on Monday and try trigger point injections if I'm not any better.

    I love this urogyn except she doesn't believe in pain relievers (except Motrin or Tylenol) for IC. She feels they are just a bandaid and don't treat the cause of the pain. I agree with her that they don't treat the cause of the pain, except now that I am in an extreme flair I feel like I can't wait a few more days to see if the valium will help. Is it wrong after 10 days of pain to want relief NOW? When I spoke to her today I told her I was at my wits end of what I can tolerate for pain. I feel like I'm in a vicious cycle where the pain is causing more spasms and vice versa. Thank goodness the NP at my PCP's office knows a lot about IC and believes in pain relief.

    Thanks for letting me vent and for any insite you may have,
    Gigi

  • #2
    Originally posted by gigi View Post
    I love this urogyn except she doesn't believe in pain relievers (except Motrin or Tylenol) for IC. She feels they are just a bandaid and don't treat the cause of the pain....
    Gigi,

    I am very glad you love your urogyn, but--there are many chronic diseases that require pain meds which do not "treat the cause" of the pain either, e.g. just like novacaine does not treat the cause of a toothache!! Pain meds are never (that I know of anyway) a treatment for the "cause" of any disease, whether the drugs be narcotics or Motrin/Tylenol or the disease be IC or cancer. Rather, pain meds are "treatment for the pain" that results from certain diseases until the "cause of the disease" can be eliminated by other means. And, with IC, we all know the answer to that one!

    Again, I am very glad that you are happy with her, but that sounds more like she doesn't think that IC causes the kind of truly severe pain that we have to deal with.

    I hope you don't take my post as an insult to your urogyn, I just think that her position is very unfair--hers, and the many other docs who don't prescribe pain meds for IC either. It is like none of these doctors are taking IC as seriously as they should.

    I have experienced a lot of different kinds of pain in my life, including natural childbirth (which was over in a matter of hours, and did not continue for months or years!), and I can honestly say that my IC pain is far beyond anything I have ever experienced! Plus, I am reading of more and more women who have both IC and cancer, and they all are saying that the pain from their cancer is nothing compared to the pain from their IC!

    I just wish someone with authority in the medical field (such as the new Surgeon General, perhaps??) would go to bat for us and make sure that everyone knows just how serious this disease really is.

    Oh well...just a little vent...so enough of that!! I don't mean to pick on your urogyn, and I certainly hope your flare gets under control -- sooner rather than later!!

    Take care,
    ~Beth
    I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

    Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

    Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
    DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
    Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
    Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
    Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
    Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
    History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

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    • #3
      Finally got my flare under control with Valium and upping my Neurontin dose. My urogyn brought up the idea of Interstim again, but in no way pushed it. Just gave me all my options. She even called me two days later to see how I was doing on the med changes, and if I was feeling any better.

      I can deal with her philosophy on no pain meds because I have a good relationship with my PCP who does believe in treating pain. Overall, for the past 6-9 months my pain has been significantly improved on the average day, and I rarely need pain meds. I've also been the pain clinic route and am very happy to be doing so much better in the past few months.

      I've worked with several urogyns and this one seems to be the most knowledgeable about IC. Her NP is great to work with too.

      I've decided to try a second round of Botox once I reach the 12 week mark. Even though it wore off quickly (about 7 weeks) it provided the best relief of anything else I've tried. I've just got to make it another 4 weeks until I can try again.

      Gigi

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      • #4
        BT2008,

        I forgot to add- I did natural childbirth twice. IC is WAY worse.

        Gigi

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        • #5
          Originally posted by gigi View Post
          BT2008, I forgot to add- I did natural childbirth twice. IC is WAY worse. Gigi
          It sure is, and I am glad to hear that someone else agrees with me!

          I had an ER triage nurse tell me several years ago -- in response to my telling her that natural childbirth was my "10" -- that it was the "standard accepted 10" along with severe dental pain...

          I have thought about that many times since being hit with IC...because my new "10" easily surpasses NCB...

          And it angers me to no end that that that same ER nurse probably would not believe me today if I told her that my IC pain is MUCH WORSE than NCB...

          Why don't "they" believe us? And treat us for our pain accordingly?????

          I just don't understand...

          ~Beth
          I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

          Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

          Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
          DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
          Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
          Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
          Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
          Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
          History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

          Comment

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