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  • Visit to the UroGynecologist

    I saw a urogynecologist yesterday. I went knowing that he treats IC and with the idea of going on continuous BCP to help reduce the flares every month before my period. I had a tubal 6 years ago so don't really need another form of birth control but knew from research that this can help. I also have extremely heavy, long periods now and my cycle runs about 23 days. Needless to say, it was an interesting visit. I left with no prescription for BCP but a strong recommendation for a hysterectomy. According to him, my uterus is retroverted (I've been told this for years so no surprise there!) as well as enlarged. He said the way it's sitting, the base of my uterus is pushing up against my already extremely inflammed bladder and making my IC worse. The enlargement is due to adenomyosis and he believes I also have glands that have dropped down into the uterine muscle. I also have a cyst on one ovary (found through a CT scan prior to my IC dx). He gave me several options: 1) do nothing (yeah like I want to live in this pain forever!), 2) Lupron to throw me into early menopause--I turned 39 on Thursday. I don't like this option because it's not permanent and also because I have bipolar and I don't need anything aggravating my depression. This also will only shrink my uterus, it won't help with the positioning against my bladder. 3) endometrial abblation--he said 80% of the time periods don't resume afterwards (I'd end up being in the other 20%! That's just the way my life is!) but that also doesn't correct the positioning. 4) vaginal hysterectomy to remove the uterus and cervix and while he's there, he'd remove any cysts on my ovaries, clean any endometrial tissue and if everything looked good he would not take my ovaries. He strongly believes that the uterine issues are compounding my IC and that if we get rid of one then perhaps and hopefully the IC will react positively. Does anyone have any thoughts, input, experience with anything like this? What's comical is that I've told my husband that if I was ever told I had to have a hysterectomy, I wouldn't be upset about it. Oh, he also gave me script for Atarax to help with the IC and told me my urologist was wrong about the Elmiron. My uro said he only kept his patients on it for 3 months and weaned them off. My urogyn said I needed to be on it at least a year and then if it worked I'd stay on it indefinitely. We talked some about other treatment options for my IC--instillations and whatnot but he seems more concerned and focused on the uterus issues. I constantly feel like everything is going to "fall out", sex is extremely painful (he also said I had vaginismus), and I nearly went through the roof when he did a pelvic. Recovery doesn't seem too bad. I just had ligament reconstruction on my ankle in February (whole nother story) and my urogyn said the hysterectomy is a "walk in the park" compared to that surgery. Any help from anyone is greatly appreciated. Sorry for the long post but it just feels good to talk about this with people who understand!

    Jana

  • #2
    I had a vaginal hysterectomy and A&P repairs thinking that my bladder issues were either being caused by or exasperated by uterine, bladder and rectal prolapse. This proved to be false.
    My suggestion, and I'm sure others who post to this thread will agree, is to get at least one other medical opinion preferrably from a Dr who's not associated with your current physician.
    Also, while a vaginal hysterectomy isnt the worst surgery regarding recovery, I wouldnt suggest going into it with the mindset of it being "a walk in the park". I personally, had an uneventful surgery and needed the full 6 weeks and then some for recovery.

    I posted this not to discourage you from going through with the surgery, but to strongly suggest getting another opinion and making a decision from there.

    Take care...
    Diana
    (\__/)
    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.

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    • #3
      Hyster issues

      As Diana said,"Always best to get two opinions."
      I also had just about everything you mention; fibroids, enlarged uterus, adenomyosis, past history of endometriosis, and tilted uterus. I had an endometrial oblation but it only lasted 10 years and the lining grew back just in time to cause trouble at menopause.
      I finally opted for the hyster because I wanted to take a higher estrogen dose than was prudent with fibroids and bleeding issues. I am 12 weeks out from a laproscopic aided vaginal hyster, doing fine. A lot of the pressure I felt around the bladder is gone, my IC or vulvar symptoms are not worse, it anything they are better. I am glad I had it, and mad I nursed such a pain the pooh so long.
      Right after the hyster when they removed the catheter I had terrible bouts of frequency, but that started to improve around week 4. The body after any surgery goes in to a kind of hysterical state and it takes it a little time to get back its rhythm and lose its fear of having something else yanked out.
      Sammi

      Sammi

      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
      Diagnosis: IC, PFD (both in remission)

      Comment


      • #4
        I would agree with Diana, you should really get a second opion. It doesn't seem like you are very confident in what this dr has told you. I have never had a hysto myself but my mother did and I was home taking care of her after it. It's pretty major surgery and I know that abdominal surgery like that takes at least 6 weeks to get over. If it feels anything like a C-Section then it's no walk in the park, that was horrible for me.
        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


        • #5
          I feel confident with what the urogyn told me--I don't with what the regular uro told me. It is a vaginal hysterectomy so there is no abdominal incision. The doc I saw is the best in this area. As for it being a walk in the park--that wasn't said to make it sound like it wasn't a big deal. I know it's a major surgery. However, compared to ligament reconstruction, recovery is supposed to be easier. I wasn't allowed to bear any weight on my leg for 4 weeks and then went through 8 weeks of physical therapy and am still having nerve problems from the incision. Anyway, I have an appointment with a uro at the University of MD in 4 weeks because he specialized in IC. I guess I'm just in kind of a "shock" with what I was told. I have been seeing my GP for the past few years for my yearly exams and am kicking myself because had I just gone to this urogyn (who did my tubal 6 years ago) instead of my GP then perhaps this wouldn't be such a surprise.

          Comment


          • #6
            vaginal hysterectomy

            HI,

            Regarding a vaginal hysterectomy. Right after I had that operation I developed severe pelvic floor dysfunction and eventually was also diagnosed with IC as well. It has been over a year now and I still can't sit without pain. I have seen many doctors to finally get diagnosed for both conditions. My treatment for both conditions is still being adjusted to try to control my pain. It has cost me thousands of dollars for treatment, lost income, etc.

            For over a year, I have not been able to do most activities that require sitting. I only recently am able to walk a half decent amount since my medications were increased. I have not been able to work, since I can't sit for any length of time and my job requires sitting all day. Basically, my whole life changed since the surgery.

            My surgeon was not knowledgeable about either pelvic floor dysfunction or IC. It was left to me to try to find out what was likely wrong, who I could get to diagnose me, and what medications and treatment would help me.

            I would not recommend a vaginal hysterectomy to anybody and especially to someone who already knows they have IC or pelvic floor dysfunction. For a vaginal hysterectomy you are up in stirrups for the whole time. They use a weighted speculum to hang on the bottom of your vagina to pull it down and the assistant uses retractors to pull your vagina, pelvic floor muscles, and other tissues up and to the side to make more room during the surgery. I think this surgery is very hard on your pelvic floor muscles and your bladder. I would rather have an abdominal scar any day, given what happened to me after a vaginal hysterectomy.

            There are many women who have developed IC after having hysterectomies and other pelvic surgery.

            Don't let any doctor tell you a vaginal hysterectomy is a walk in the park. If you are uncomfortable with your present suggested treatment, get a second opinion, and a third if you need it. Maybe ask on line here if someone has had a good or bad experience with a certain doctor. They can send you a private message about their experience. Check into the Hyster sisters site as well.

            There are many ob/gyne doctors that know very little about IC, pelvic floor dysfunction, and other causes of pelvic pain. Many don't know that IC and endometriosis often go hand-in-hand. Those two diseases have been referred to as the "evil twins".

            I have been told to avoid any pelvic surgery in the future because it would make my symptoms worse.

            Take care,

            Kathy

            Comment


            • #7
              Pfd

              At 13 weeks post laproscopic assisted vaginal hyster, my vulvar specialist just referred me back for a round of more PT as she said my pelvic floor was very, very tight. I have had a few PF spasms, nothing big, but otherwise no symptoms.
              She said that after any pelvic surgery the PF tightens, and PT is a good idea to either prevent trouble or treat the present tightness.
              Sammi

              Sammi

              Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
              Diagnosis: IC, PFD (both in remission)

              Comment


              • #8
                OK, I think people are misreading what I said or don't understand what I meant by "walk in the park". He was in no way saying the surgery or recovery wasn't difficult or major surgery. He was comparing the recovery to that of the recovery of my ligament reconstruction surgery. This doc is a urogyn. He knows a great deal about IC--infact he started me on Atarax because the other doc didn't and discussed other treatment optioins which the other doc didn't either. He knows what he's doing. I'm not questioning his knowledge and I feel confident with what he told me. I'm asking for people's input who have had this surgery with a knowledge/diagnosis of IC prior and what their recovery was like so I know what to expect. I did get a second opinion and the second doc whole-heartedly agreed with the first doc--given ALL of the issues that are going on and looking at the whole picture the hysterectomy is the way to go. The uterine stuff is only compounding the bladder stuff. Surgery is currently scheduled for Aug. 1 but could be moved up if he has any cancellations.

                Sammi-thanks for your comments. I'm hoping this surgery will help me too with the constant pain, pressure, heavy periods, etc. I know that frequency is quite common after surgery like this so I won't be too alarmed.

                Kathy-I'm sorry for what you have had to go through. Unfortunately, developing IC after surgery like this can happen. It really stinks that we, as patients, have to do the research to find treatment options. I know I have spent HOURS on my computer doing research. Good luck.

                Comment


                • #9
                  Dragonfly lady, I'm so sorry about this! It's too bad that you've had 2 doctors tell you to do the hysterectomy now. I wouldn't want to do the Lupron if I were you. I am really against that because it has so many side effects. Why would anyone want to go into an early menopause? I had a doctor recommend it to me (a year ago)when I was 25.
                  If the hysterectomy is what you feel is right, then I think you should do it. I don't have 100% faith in doctors, but they are trying to do what's best for you. Good luck with the surgery if you do go through with it. Make sure you research all the options out there first. Can you just ask for BCP and say the you will try it for ___ # of months and then go with the hysterectomy if it's not helping?

                  Comment


                  • #10
                    Abliske, I originally went to the urogyn to try BCP. As we were going over my options, I asked once again about the BCP and he said that with what was going on, they wouldn't help at all. Yes, they would stop my period but wouldn't do anything for the enlargement, adenomyosis, and position of uterus. I too no longer have 100% faith in doctors. It's sad. I also have a diagnosis of bipolar and when I asked my psychiatrist about the Lupron, she gave a fast, resounding "NO". And the thing with Lupron is that it's only a temporary fix. I have had so much pain and discomfort that I'm actually really anxious to see how it's going to be afterwards. Living in constant pain has been no fun. I take 800 mg of Motrin at a pop and it has no effect. What did you do in replace of the Lupron your doc suggested?

                    Comment


                    • #11
                      Lupron

                      Lupron is a nasty drug. It blocks all your estrogen, and unbalances your hormones drastically. Good for your psychiatrist.
                      Sammi

                      Sammi

                      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                      Diagnosis: IC, PFD (both in remission)

                      Comment


                      • #12
                        Similar recommendation and confusion

                        I have had !C for over a year now and been to several doctors. I had to post because I, too had a doctor tell me just 6 weeks ago that I may want to consider a hysterectomy because my uterus is also retroverted and may be putting extra pressure on my bladder. However, when I saw another doctor in the same office (pelvic pain/gyn), she suggested that my uterus wasn't part of the problem and that I shouldn't consider any type of surgery right now.

                        So I will be very interested to hear more about what your doctor is thinking and what you decide to do. I have two very different opinions from two very reputable doctors in the same practice.

                        It's absolutely maddening trying to make these decisions when all we want is some symptom relief. I remember when I pushed for a cystoscopy with hydrodistention. I had NO idea what kind of healing process that was. I was in bed for about a week, and had terrible symptoms that lasted two or three weeks before I had a two week reprieve. Then back to the same old stingy, urgent bladder. So after that experience I would be cautious about letting anyone do anything dramatic in that area. On the other hand, we are so desperate for relief that we will put up with the pain if we know there's a light at the end of that tunnel. However, we don't have any idea if there will be a light, or more darkness and misery.

                        I can't say I am glad to see other's going through this because I wouldn't wish it on anyone, but on the other hand; I am glad there are other people going through this so that I don't feel alone. Do you know what I mean?

                        I just keep praying for a miracle.
                        IC diagnosed 2006
                        Vulvodynia
                        IBS
                        Prolapsed bladder, uterus, rectocele

                        Interstim implant
                        Elmiron
                        Elavil
                        Atarax
                        Lyrics
                        Prelief
                        endocet

                        Comment


                        • #13
                          My Story

                          It was strongly suggested to me nine years ago to have a hysterectomy due to 4 mos pregnant uterus enlargement, fibroids, cysts in left ovary, possible adenomysosis, bleeding.

                          My answer, against everyone's wishes, was a resounding "no". IMO, removing an organ for anything but cancer (even for cancer) is quite barbaric. It says to me that they do not have another means of "fixing" you.
                          That doesn't sit right with me. Not to mention, your body has to adjust to missing an organ - yikes! There could be other unforseen repercussions.

                          Fast forward 9 years... My uterus has shrunken on its own due to menopause. The fibroids are much smaller if there at all. And on the last sono, the cyst in my ovary was not mentioned for the first time in 9 years.

                          I cannot tell you what to do, but if all medical science can come up with is "cut it out", then I say with a smile on my face, there are many organs of mine that should be removed, which would leave me an empty shell to live in....
                          Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

                          Medicines:
                          Claritin 10 mg/AM for MCAS and allergies
                          Synthroid
                          Aciphex 20 mg in PM for GERD
                          Zantac 75 mg, one at night for MCAS and GERD
                          Singulair 10 mg in AM, for MCAS & allergies
                          Zyrtec 5 mg/PM for MCAS and allergies

                          Non-Medicinal Helps:
                          glucosamine 500mg/MSM 500mg 2 X/day
                          I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

                          I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

                          Comment


                          • #14
                            mtn runner,
                            That's good you had a dr. tell you, you don't need a hysto. I can totally relate to what you said about the light at the end of the tunnel. I didn't know how bad a laparoscopy would be when I had it done to see if I had endometriosis. Then, I had the hydrodistention with no relief. I even opted for another hydro with capsacian because I thought it would deaden the nerves in my bladder. It was awful! I almost went for Botox, but it's so expensive. I need a bread from all these seemingly experimental treatments. ONe person keeps telling me to go to Stanford, but I don't think they realize the road I've been down has been really rough and I just want to control my pain with meds for a while. I'm not giving up, but need to try to heal myself with non-invasive options.

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