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  • Gyno visit today, now I'm confused

    Hi Everyone!
    Went to the gyno today after my Urologist told me yesterday that I had a big fibroid and that was causing my IC symptoms. The gyno told me today, that my fibroid doesn't appear that big and that on the CAT scan, my bladder was empty so it didn't give an accurate view of the bladder and uterus. He did say I have endometrosis, my uterus was pushing against the bladder and that since the bladder and uterus share a wall, it's hard to tell what is causing the problems, the bladder or the uterus. He's going to put me on Lupron(spelling?) and hopefully this will shrink my uterus. He thinks that it's necessary to treat the Endometrosis first and see if that helps my bladder problems. If it doesn't I need to see an IC Urologist. He says a lot of time IC and endometrosis go together.
    I know from a lot of your posts that a lot of you have endometrosis. Did any of you go through what I'm going through? I would love to have some feedback to decide what options I should do.
    Thanks Again!

  • #2
    I have endo and IC but I have never had a fibroid. I would do a lot of research about Lupron. My dr suggested that I consider Lupron and I read a lot of bad things about it. Once I found that I had IC I realized alot of my pain was from the IC and not from the endo. I would do research before you let your dr start Lupron, I have read a lot of women say that it made them feel worse than they felt w/o the Lupron.

    Sorry I couldn't be of more help.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      Lupron?

      Does the Lupron cause flares of IC? If that's the case, I'll definitely call my Uro back and ask him about it. The LAST thing I want to do is cause more IC flares. My Gyno seems to think that if I do the Lupron, it will shrink my uterus away from the bladder.

      Comment


      • #4
        We thought my pain was coming from my uterus and had already been told I had Ic before this. My uterus was large and dr thought I had endometrosis in it but once it came out it was looked fine. After my uterus came out my Ic has gotten worse. Don't get me wrong I don't miss my uterus because of the periods I had but just wanted to share that with you and I wish you luck
        I am 28 and have been married for 7years. I have two boys one is 6 and the other 2. I have worked at the same job for 10 years.

        Comment


        • #5
          I was diagnosed with endo at 15 and fibroids when I had my baby delivered via c-section at 40. Three years later the IC really kicked in, and I visited my gyno to see if she thought the fibroids and/or endo could be affecting my bladder (my urologist didn't think so, but said it was worth a shot). She didn't think it was too likely, but said to do two cycles of birth control to calm down the fibro and endo and see how my bladder fared. Although the bladder pain and discomfort associated with my period is MUCH better since I've gone on the bcp, it didn't significantly affect my regular IC symptoms.

          Of course, that doesn't mean that endo and/or fibroids don't cause bladder pain in some people. I know at least a few people who have found out definitively that endometriosis of the bladder wall is responsible for their IC symptoms (I hope I said that right -- Amy (IHURTTOO) is one and can give you much better info). However, I wonder if Lupron isn't a big first step, when maybe trying birth control pills first to see if there's an impact on your bladder? Lupron does have lots of side effects. Have you tried BCP already? I never did Lupron myself, there was another endo drug they used 25 years ago that did really help my endo and kept it at bay for a long time.

          Obviously, you and your doctors need to make this decision, but I'll be interested to see what others more experienced with Lupron have to say. From what my gyno and uro said, although lots of people have both endo and IC, fixing the gyno problems doesn't positively affect the IC nearly as much as many (including myself) hoped. Good luck!

          Comment


          • #6
            I don't know if Lupron flares IC or not but it basically puts your body into chemically induced menopause from what I understand. From what I have read from patients who tried it they had horrible mood swings, hot flashes, night sweats, things like that.

            I really thought all of my pain was endo related until I realized that I had IC too and now I think that more of my pain is IC and less endo. That's just me though.
            Christine



            I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
            1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
            2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
            I have tried every oral medication as well as rescue instills and DMSO.

            I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

            Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
            Also proud mom to the best Bullmastiff on earth, Claus

            Comment


            • #7
              I have Endo and IC and to me the IC pain is alot worse.. Now when I was younger my period cramps would send me to the ER.. The GYN put me on continous birthcontrol and I never have a period that seems to help so much! Just wish I could find somethng that help with IC pain.. Good Luck
              Hugs
              Ronda

              ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


              Link to Patient Handbook:
              http://www.ic-network.com/handbook/

              Diet Reference Sheet:
              http://www.ic-network.com/diet/icndi...tsheet0909.pdf

              Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

              Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

              Meds I have Tried:
              Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
              Lexapro< Bad reaction to this med!
              Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

              Dx With IC in Nov 2006 with Hydro/Cysto
              Hydro/Cysto Caused Bladder to Rupture.

              Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



              ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Comment


              • #8
                History of Cancer

                The reason my Gyno won't put me on BCP is my Mother had breast cancer and I don't want any kind of estrogen running through my body. Since neither the Gyno or the Urologist want to move forward with IC dx yet(frustrating!), I think I'm going to order the Aloe Vera supplements and give that a try.
                I'm going to do some more research into Lupron. My gyno gave me another prescription for something to help with the menopausal symptoms(aygetin?). He also gave me a script for Dextrol. Does anyone know about the effects of Dextrol?

                Comment


                • #9
                  My sister-in-law was on lupron for 6 months after she had a large ovarian cyst removed. She said it was awful for her ( she was only 18 at the time). She said she had severe depression and mood swings and hot flashes while on it. I am not sure how it would effect the IC though.
                  I also have end and my gyne mentioned me doing the lupron, but I said I would do BC pills first before doing the lupron. When you get the lupron shot, you are stuck with the effects for quite awhile, or at least until the med wears off which can be months. At least with the BC pill, if you have a reaction, you just stop it and the side effects should go away soon. Good luck in what ever you decide.
                  Jen

                  Comment


                  • #10
                    New doc

                    I think I'm going to get a second opinion from another doctor. Lupron is aggresive I know, he did give me another script for some medicine to help with the side effects.
                    Thanks everyone!

                    Comment


                    • #11
                      Allies40,

                      My urogyno said that I likely have endo and that I need to give my new bcp time to work. I had wicked periods (crippling) and when I was 17, they put me on othro-tri-cyclin and that helped my period tremendously. Then out of the blue, horrible period pain again. It started when running and then with my periods. It was terrible and has been. My gyno put me on Seasonique (keeps my periods away for 3 months). The first 3 months were hell, but this period is much better than the last 6 months...

                      Now that being said, if my bladder persists to be a problem, my urogyno will explore to see if endo is aggrivating my bladder instead of or in addition to IC.

                      Good luck! This is frustrating and confusing!
                      [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                      [

                      Comment


                      • #12
                        I have ic and endo. I went threw the lurpron shots. They are expensive and i had the worst time with my ic. I told the gyno that i think it was making matters worse. She stoped the shot and put me on birth control. I was also going to my uro for treatments and nothing worked till i stoped the shot. I havnt had the shot in 4 months and i have been in remission. The drs dont tell you that the lurpron will bother the ic. I figured it out on my own. I was having a few problems with ic before the lurpron but during i could hardly get out of bed. I wen to the dr every week, had to go to the emergency room and stuff. I stop and we added a new med and have been fine. really thank about the shot and ask your drs up front if they think you really need it and ask if it could upset your ic. And look into everything please. After i started it i heard storys about it. I really dont know but that was my experense with it.
                        current meds.
                        Elmiron 3x a day
                        Premrin had full abd.hys.
                        vesicare 10 mg
                        Prozac 20 mg
                        vistaril 50 mg at night
                        vistaril 25 mg in the morn
                        topamaz 100 mg at night
                        amitriptylin 100 mg at night
                        amitriptylin 50 mg in the morn
                        Pyridium as needed
                        and everyone wonders why I am crazzy

                        Comment


                        • #13
                          Still confused

                          I think I'm going to go and get a second opinion from another gyno. I see that some of you think that a hystertomy is worse off for the IC, and some think that the Lupron shots will make the IC worse. Whatever I do, I want to make sure that I won't make my IC symptoms worse. My only condition is that since my Mom had breast cancer, I'm not a good candidate for BCP. Have any of you heard about Ablation? That was one thing my gyno mentioned to me.

                          Comment


                          • #14
                            My first GYN also mentioned exploring possible endometriosis as causing my pain and said we could treat it with Lupron however I feel awful when I'm not on the pill due to low hormones so I definitely didn't like the idea of Lupron and suppressing my hormones further. I am still not sure if I should explore whether I have endo or not. I don't think I do cause for the past 2 months I've felt better when on my period so I don't know if it's just conicidence of when I'm flaring in or out or what's going on. Charisse
                            The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                            First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                            Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                            Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                            Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                            BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                            Comment


                            • #15
                              Allies40 - have you had a laparoscopy to diagnose that you do have endo? A laparoscopy is the only way to diagnose endometriosis. I have both endo and IC and my Mom also had breast cancer so I will not use any hormones. I did a ton of research on Lupron and from what I read and from people I spoke with the side effects can be awful. I have had my endo surgically excised(not lasered off since it is still there since they don't get the root out - kind of like just pulling off a flower - you still have the root left) so it is completely removed. I have had this done twice and so far it has kept my endo symptoms pretty much under control.

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