Partial hysterectomy @48 because of heavy and painful periods, adenomyosis, enlarged uterus

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Hi everyone,

I had a partial (subtotal) hysterectomy due to adenomyosis one month ago and I have been recovering pretty well so far!. I kept my ovaries and cervix.

I had painful and heavy periods, uterus enlarged nearly 50% and was diagnosed with adenomyosis. In fact, some doctors said it is an intramural fibroid, but as I’ve learned during this journey, these two are so [similar that one may be misdiagnosed for the other. Because adenomyosis causes the uterine lining to break into the uterine wall and to grow fibroid-like masses there. Final diagnosis confirmed adenomyosis.

I am not from UK but this website and  women’s experiences here was sooo helpful for me on my journey to decide and prepare for my hysterectomy and afterwards that I wanted to share some info and experience… just in case if it helps anybody wink

My doctor suggested different options for treatment: Mirena (IUD), uterine embolization and hysterectomy as the long-term options and GnRH hormone treatment as a short term solution. But he also made it clear that these options will help only for bleeding, not for the pain.

That info was crucial for my decision to opt for a hysterectomy because I have been using NSAIDs for pain for years and I was fed up. I have been feeling the side effects more and more. For the bleeding, I have done quite a bit of research, and from the websites like this one, learned that Mirena and uterine embolization were not helpful for many women and meant just more suffering for longer time. I also used Fibristal (called Esmya in UK) for 3 months before my surgery, was excited about it; but it did not help much: it made a difference of only 1-1,5cm smaller if ever…

So  I opted for a hysterectomy! And, so far, I am really happy for doing it. It feels like a new phase in my life is starting: I don’t have to deal with all that stuff anymore: heavy and painful periods, pain in b/w periods, chronic anemia, fatigue/exhausted, side effects of Naproxen (NSAIDs for pain)… They will all be history smile I am hoping a better quality of life.

However, it is important for me to emphasize that I am not trying to promote hysterectomy in any way. I know it is a personal and important decision and it is a major surgery. The decision depends on one’s expectations from life and priorities.

good luck to everybody!

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8 Replies

  • Posted

    Hi, great news that you are feeling better and are positive for the future. You sound like you did lots of research and made an informed decision that was right for you and your situation, and isn't it a fab feeling when you feel like that nightmare is behind you! I also tried many options and also tried Esmya for many months, my decision to have TAH was a very personal decision that was right for me and the only way I felt I could start to get my life back. I am now six months down the line and am feeling better every day, no more bleeding every day and more importantly no more debilitating pain! As you said, this is major surgery and I am sure most research and all other options considered, but at the end of the day I really don't think anyone ops for a hysterectomy on a whim, I was scared witless!! This site is a great way to get a balanced view of lots of options and I love hearing positive stories of anyone who has successfully received treatment of any kind that has worked for them and they are now recovering, thank you for sharing your journey and I hope you continue to recover well, I feel better now than I have in years and my quality of life has improved loads!!

    Best wishes to you all and good luck with your journeys

    xx

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    • Posted

      Hi barbara91702,

      I am happy to hear that you are happy with your decision after 6 months and feeling better every day. I am excited and hoping the same thing;  that my quality of life will improve!!

      I am a little disappointed though that the recovery takes so long. Officially I was told (and read) 6 weeks and I had thought like give it some more time and in 3 months I should be able to leave it behind. But now I learn that it may take up to year the full recovery, and problems may arise all of a sudden even after months... So I guess really have to be careful with the work load etc. and need to watch myself.

      But I feel great because I am moving on the right directionsmile

      Best wishes to you as well!

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  • Posted

    Good luck Ah

    I almost went through with a hysterectomy but I want to try less invasive procedure which is tbe embolization. I have read success and negative stories with both making me almost chicken out. I really need to do something because these things are getting out of control so that is my choice. Best of luck with your recovery.

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    • Posted

      Hi kristen17087,

      As you said, there are negative and positive stories with the embolization, not all are negative. You are definitely doing the right thing when considering it. There are many factors to take into account when you choose the procedure; I opted for hysterectomy cause I was fed up and it was OK in my case (I am already 48) and I wanted a permanent solution.

      I hope embolization will work for you. Whatever you decide, best of luck !!!

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    • Posted

      Kristen I had Embolisation followed by abdominal  hysterectomy 4 months later.  This was planned as my fibroid was so big my surgeon wanted to try and shrink it to reduce size of my incision.

      The Emolisation procedure was easy as they give you plenty of medication.  I went home feeling discomfort but no pain.  However,  I over did things and did not take stool softeners.  I had terrible cramping  pain starting 3 days after surgery and it lasted  a couple of days.  I know if I had rested completely and taken miralax and stool softeners it would not have been as bad.  Much of the pain was due to trapped gas.

      The hysterectomy was nowhere near as bad as expected.  I was in discomfort for a week but not really pain. I made sure to rest, eat little and often and used miralax and stool softeners to prevent gas build up.

      I am now feeling so much better.  Carrying a huge fibroid around and feeling (and looking) pregnant had blighted my quality of life.  For the months before my surgeries I had worked hard to lose weight and get fit.  I was cycling a lot and I am sure this lead to a speedy recovery .  

      Good luck

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  • Posted

    Hi su. I too am 48 and I'm opting for a partial hysterectomy although I would prefer a full one done. I have multiple fibroids and have had the mirena coil fitted and since have bled and cramped almost everyday since. I have been told numerous times that once recovered from the surgery my life will change. I can't wait to have my sanity back. I made my decision on hysterectomy from the moment fibroids were diagnosed but I did researchall other options. After suffering for so many years I know I made the right decision. I wish you well for the future x

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    • Posted

      Hi tracey! It makes me happy to hear from other women. the stories the women were sharing on this website was so helpful for me along my journey. That being said, you definitely did the right thing by trying mirena because hysterectomy is the last resort and there is no going back! 

      In fact, I was very reluctant about surgeries all  my life. But in this case, I really did not see any other option to solve my problems completely and I was fed up with all this suffering. Yes, suffering for so many years... In fact,  I feel like somewhere in me there is a grief that I need to deal with for all that years lost and suffered... But that is to be addressed later, I ]will enjoy my good days first biggrin

      BTW, partial hysterectomy is a good idea if a total is not medically necessary. Best of luck to you along the way and wish you a quick recovery!!

       

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