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  • Hysterectomy to reduce IC/PFD flares?

    OK - here's a question. Has anyone had a hysterectomy specifically because their IC/PFD flares correlate with their monthly cycle? And did it help any?

    My gynecologist suggested I try uterine ablation to reduce the "activity" during my periods - I do have endometriosis and heavy periods - but unfortunately, this is month three since and even with a progesterone-only pill (progesterone does not flare me) I am still having reasonably heavy periods. I was told after the procedure that I have a bicornate uterus and the ablation was unable to be complete.

    At any rate, I still have cramps as bad as before and also IC flares. I'm pretty disappointed that I'm still having fairly heavy periods, too.

    My gyne and I have talked about if there is no improvement by May, then maybe hysterectomy is the right option for me this summer (I'm going to be 40, I'm back in college, so summer would be the best time). I just want to know if it worked for anyone, or at least alleviated any IC symptoms for anyone?

    Stephanie

    Current treatments include:
    2.5 mg valium 2x daily (5mg during flares)
    vicodin as needed for flares and cramps
    ibuprofen
    Desert Harvest Aloe Vera (I do think this is helping!)
    monthly instillations of Elmiron/heparin/lidocaine
    following IC diet best I can
    Stephanie
    GutThinking.com

    Dx's
    2011 - Adenomyosis (172g uterus), Ovarian Cysts
    2007 - Endometriosis, Interstitial Cystitis
    2004 - celiac disease/autoimmune gluten intolerance
    2004 - migraines
    1999 - Nightshade intolerance
    Sciatica, thoracic and cervical disk problems
    Separated shoulder (a/c joint)
    Positive ANA since 1990

    Treatments

    6/30/2011 - total hysterectomy (vaginal, lap assisted)
    9/15/2010 - first instill (heparin, lidocaine, sodium bicarbonate) - adding Elmiron for the rest of the series (still doing this, 2 the week before my period)
    11/2010 - Uterine ablation with hopes it would calm down abdominal activity - didn't work

    Meds
    Desert Harvest aloe vera
    valium
    vicodin
    Vivelle Dot .1
    ibuprofen
    Imitrex
    Singulair

  • #2
    I had a hysterectomy and yes I think I feel my bladder has more room therefore less pressure. You have endometriosis I did not. That it's self must be very painful. I am a senior, you are young. I went through the change at age 45, hot flashes etc. You will be in that condition immediately after surgery. I take a very low dose of premarin. My Daughter while in her forties had a full Hysterectomy. She had many bad problems before the operation and tells me it's like Heaven now. She takes herbal stuff to help with her hot flashes. Maybe due to my age but I was down and weak for a month. My Daughter did better. Only you & your Doctor will know what is best for you. Just letting you know my story. We are all so different. Hugs, Ziggy

    Comment


    • #3
      Originally posted by skbird View Post
      OK - here's a question. Has anyone had a hysterectomy specifically because their IC/PFD flares correlate with their monthly cycle? And did it help any?

      My gynecologist suggested I try uterine ablation to reduce the "activity" during my periods - I do have endometriosis and heavy periods - but unfortunately, this is month three since and even with a progesterone-only pill (progesterone does not flare me) I am still having reasonably heavy periods. I was told after the procedure that I have a bicornate uterus and the ablation was unable to be complete.

      At any rate, I still have cramps as bad as before and also IC flares. I'm pretty disappointed that I'm still having fairly heavy periods, too.

      My gyne and I have talked about if there is no improvement by May, then maybe hysterectomy is the right option for me this summer (I'm going to be 40, I'm back in college, so summer would be the best time). I just want to know if it worked for anyone, or at least alleviated any IC symptoms for anyone?

      Stephanie

      Current treatments include:
      2.5 mg valium 2x daily (5mg during flares)
      vicodin as needed for flares and cramps
      ibuprofen
      Desert Harvest Aloe Vera (I do think this is helping!)
      monthly instillations of Elmiron/heparin/lidocaine
      following IC diet best I can

      I think a pelvic surgery would be very bad for PFD. I'm only a nurse. Talk to an IC doctor AND a PT about this before agreeing to anything, that's my 2 cents. Good luck!

      Love, H.

      Comment


      • #4
        Hi, skbird ~
        I had a hysterectomy but not to reduce IC symptoms/flares....I actually believe my IC came as a result of my hysterectomy/bladder suspension surgery.....Please read up on possible problems a hysterectomy may cause...i.e. prolapses, etc. I can understand the anguish and desire to "get it out" to help things, but I for one had vaginal vault prolapse soon after my surgery. If you need the surgery by all means make your decision accordingly, but just make sure you make an informed decision....many times we just jump into a suggestion by a medical professional but we owe it to ourselves to research, especially with access to so much information via the internet and ask your doctor any questions your searching might bring up.

        Best wishes with your health needs and hope you'll be feeling better very soon.
        Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

        11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
        8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
        8/2010 Surg gallbladder
        TREATMENTS (updated 4/15)
        IC Diet since 8/2009 (Able to vary 4/15)
        Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
        Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
        Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
        *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
        Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
        PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

        Comment


        • #5
          Thank you for your replies so far. I appreciate the points of view you are all sharing.

          I was really disappointed to have NO difference of symptoms after the uterine ablation - not just IC but the heavy periods and pain associated with that (endometriosis playing a part, too). I just started my third period since the procedure (day two) and so far it's a lot less heavy - I think the "mini-pill" birth control pill may be helping. Also been taking evening primrose oil which is reducing breast tenderness which has been really bad lately.

          I can see how uncrowding my pelvic region and reducing pain stimuli from my monthly cycle would "in theory" seem to help with reducing IC, yet how in practice, it might stir more things up. And I've read about the dreaded prolapse! Gah! I really don't want to go that route if I don't have to - just looking to see all sides of things.

          My mom recently gave me copies of my medical records from birth to age 19 - and at age 19 I was already diagnosed with menorrhagia, frequent UTIs, migraines, and had a positive ANA (1:160) which I still have today, 20 years later. There was even a urinalysis that, from my research, looks like IC ("too numerous to count" WBC, "moderate" epithelial tissue, "few" bacteria) when I wasn't even suffering from a UTI at the time or given meds for it.

          Even though I didn't realize or was in denial about this disease until about a year ago, I think I've had it all along, to some degree, and just always assumed my symptoms were other conditions. Though I do have endometriosis and when I had the ablation, I had a "thick and cranky" endometrium (nice technical terms, huh?)

          Really wish I could find some ways to reduce the flares aside from instills. Really wish I could reduce to a tolerable level the horrible cramps I get every month. But I'm beginning to see that maybe hysterectomy isn't right for me.

          Thanks for all your thoughts -

          Stephanie
          Stephanie
          GutThinking.com

          Dx's
          2011 - Adenomyosis (172g uterus), Ovarian Cysts
          2007 - Endometriosis, Interstitial Cystitis
          2004 - celiac disease/autoimmune gluten intolerance
          2004 - migraines
          1999 - Nightshade intolerance
          Sciatica, thoracic and cervical disk problems
          Separated shoulder (a/c joint)
          Positive ANA since 1990

          Treatments

          6/30/2011 - total hysterectomy (vaginal, lap assisted)
          9/15/2010 - first instill (heparin, lidocaine, sodium bicarbonate) - adding Elmiron for the rest of the series (still doing this, 2 the week before my period)
          11/2010 - Uterine ablation with hopes it would calm down abdominal activity - didn't work

          Meds
          Desert Harvest aloe vera
          valium
          vicodin
          Vivelle Dot .1
          ibuprofen
          Imitrex
          Singulair

          Comment


          • #6
            So I was swinging to the "no-hysterectomy" side of things when I got my period again and had a horrible flare. Had to take two days off school (it started Tues night, got bad Wed, and I took Thurs/Fri off so I had the weekend, too) and am still dealing with the "hangover" a week later. I was flaring at ovulation and during my period before but the ovulation flare stopped ever since I've been on birth control (stops ovulation, ergo, helps stop ovulation-triggered flares).

            However, though the pill has lessened the heaviness of my period, my cramps are still terrible and, voila, terrible flare.

            To this point it's been my nurse practitioner, who gives me the instills, who has suggested I explore the idea of a hysterectomy. Encouraged me to do research, etc. This last week I saw my actual gynecologist (who originally diagnosed my IC) and she flat out said "Have you considered hysterectomy?"

            I know getting The Big H has triggered IC in people, but as my gyne pointed out, I already have it, and how much worse could it be?

            It seems like I would at least be scratching the horribly painful periods off my list, and possibly another trigger. Most the rest of the month, if I follow the diet and take my aloe, I do pretty well.

            Any thoughts?
            Stephanie
            GutThinking.com

            Dx's
            2011 - Adenomyosis (172g uterus), Ovarian Cysts
            2007 - Endometriosis, Interstitial Cystitis
            2004 - celiac disease/autoimmune gluten intolerance
            2004 - migraines
            1999 - Nightshade intolerance
            Sciatica, thoracic and cervical disk problems
            Separated shoulder (a/c joint)
            Positive ANA since 1990

            Treatments

            6/30/2011 - total hysterectomy (vaginal, lap assisted)
            9/15/2010 - first instill (heparin, lidocaine, sodium bicarbonate) - adding Elmiron for the rest of the series (still doing this, 2 the week before my period)
            11/2010 - Uterine ablation with hopes it would calm down abdominal activity - didn't work

            Meds
            Desert Harvest aloe vera
            valium
            vicodin
            Vivelle Dot .1
            ibuprofen
            Imitrex
            Singulair

            Comment


            • #7
              I wish I knew the answer to that question as well. I have horrible periods also and my doctor has suggested I get my uterus out. I already have IC and wonder if it would make it worse. My Uro said it could but the chance is less than 50 percent. The thing is I feel like I can't take that chance. It's one thing to have a few bad period days a month for the next 6 years or so but another to have increased IC pain daily for the rest of my life. I don't know what to do either. I'm too scared to make the choice but hate being sick every month. I don't know what to do.
              Last edited by carole; 08-22-2011, 03:38 PM.
              Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

              Tried:
              Detrol:only took one pill and it made me sick
              Elmiron:caused horrible pain(took 1 week)
              CystaQ:caused alot of burning and pain(only took one pill)
              Wellbutrin:only on it for three days as it caused alot of bladder pain
              Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
              Prelief:made my bladder burn and feel tingly.

              Take:
              Uracyst:Started May 19 2011
              Enablex:take one pill daily with no issues
              Naproxen:for pain as needed
              Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
              Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
              Supplements:Whey Protein powder daily
              Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

              Comment


              • #8
                I did it - June 30 of this year. I have had instillations since then and also am trying acupuncture. To be honest, I have had two UTIs since and they were the first in about 2 years, but other than that, I have not had a full-on flare yet, despite the fact that new pictures (four years after the first set) show my bladder is much worse and inflamed.

                So far, I am happy to be done with periods, and think that while the hysterectomy couldn't cure my IC, it is helping. I had a total hyst and am on HRT of bioidentical estrogen and testosterone. I think my IC symptoms may have gotten worse exactly when my estrogen started dropping on its own a little over a year and a half ago. The supplemental estrogen (since I had my ovaries removed) is leveling me out and helping my bladder feel better, too.

                I can't say it's for everyone, but thought I'd give a mini-progress report. At almost 8 weeks post-op, I am glad I did it.
                Stephanie
                GutThinking.com

                Dx's
                2011 - Adenomyosis (172g uterus), Ovarian Cysts
                2007 - Endometriosis, Interstitial Cystitis
                2004 - celiac disease/autoimmune gluten intolerance
                2004 - migraines
                1999 - Nightshade intolerance
                Sciatica, thoracic and cervical disk problems
                Separated shoulder (a/c joint)
                Positive ANA since 1990

                Treatments

                6/30/2011 - total hysterectomy (vaginal, lap assisted)
                9/15/2010 - first instill (heparin, lidocaine, sodium bicarbonate) - adding Elmiron for the rest of the series (still doing this, 2 the week before my period)
                11/2010 - Uterine ablation with hopes it would calm down abdominal activity - didn't work

                Meds
                Desert Harvest aloe vera
                valium
                vicodin
                Vivelle Dot .1
                ibuprofen
                Imitrex
                Singulair

                Comment

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