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Facing a hysterectomy and have so many questions/concerns

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  • Facing a hysterectomy and have so many questions/concerns

    Hi all, I've been dealing with an IC diagnosis since 2007 and after two babies via c-section and a tubal ligation during my last section, my periods became extremely heavy, long and painful. Fast forward to 2019 and I was finally diagnosed with deep endometriosis and adenomyosis. I've tried the Mirena (lasted 1 week, severe abdominal pain, had it removed), tried Visanne (7-8 months, but really bad side effects) and then Micronor (only made it 3 months, worse than the rest). Facing a hysterectomy (uterus only) as it is the only way I can have less bleeding and get my iron/ferritin levels back to a healthy place.
    I am concerned because the OB/GYN suggested that sometimes they have to 'move' the bladder in order to do the hysterectomy and my IC is well managed at present with very little medication etc. so I am TERRIFIED it will result in a massive and long lasting flare up or damage to the bladder.
    I'm also concerned about libido and so on as I'm only 40. Not to mention the recovery time needed and I have two children, work and college.
    Any experience and input is greatly appreciated.

  • #2
    I had a hysterectomy in 2003.. the bladder was stuck to the uteris from adhesions .. it had to be separated and it went well.. I kept ovaries..It was the best decision I have made..But it did disturb the bladder and I was diagonsed a year later with IC.. I am pretty sure I had IC a long time before that though and the surgery just aggravated it.. It is a tough decision.. I never regretted having the hyster though. all the best.
    God brought me to it, He will bring me through it!!!

    Diagnosed 2003
    by cysto/hydro
    Elmiron took almost a year- made me sick, caused diarrhea
    Pyridium -Made me sick
    Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
    Tried DMSO instill- had 5 out of 6
    Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
    Cysto/hydro April 6th 2011-- on expansion only hold one cup
    IBS/ IC
    High blood pressure meds and Crestor
    Metformin (prediabetic)
    Sinequan (depression)


    • #3
      lalarainbow, thank you for your reply. That is what I'm worried about. I do heparin instills to keep inflammation down (as well as diet etc) but I know it will be a few weeks after surgery before I can entertain that idea if my bladder is out of whack. I am nervous because of potential complications only, not of them taking the uterus at all (they can have it!! lol). I appreciate you sharing your experience


      • #4
        I also have Adenomyosis and suffer from very heavy periods and pain. I know every person is different and some people get the hysterectomy and feel great and some say it made their IC a lot worse. In my case I won’t get the hysterectomy because I’m scared to death it will make my IC worse, unless some type of cancer was detected then I would have no choice. My bleeding is so heavy I have to use a Ultra tampon and a pad due to such heavy bleeding. I’m recently recovering from a 9 week flare due to a Med the doc gave me to try and control my heavy bleeding. I’ve decided to just deal with the bleeding for the 5 days of the month rather than take the chance of making the IC worse. Everyone is different and I feel you have to decide what’s best for you and your body. Take your time and do what you feel is best for you.


        • #5
          steelerfan, I agree, that is one of my fears too, that my IC will be worse. I am lucky mine is fairly well managed, but if they have to remove any adhesions etc. that could change things and there's no way to know. I have a uro/gyn who is amazing though, and I'll be talking to her about preventative/post op management with my heparin instills to ensure inflammation is well managed etc. (along with diet etc.).
          My periods are longer than 5 days, unfortunately. I have bleeding almost 2 weeks/month (not all heavy, first 5-6 days are the worst and most painful) but it impacts my iron/ferritin levels so much I need a nap partway through the day. When I was on Visanne and had no period, my ferritin/iron were in an awesome healthy range and I felt great, so we know it's all related to the heavy, prolonged bleeding
          This has been a 3 year conversation/trial and error, nothing about this decision came easily or lightly. I meet with the OB/GYN this morning to discuss things and go from there :o/