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

Women's health
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Hi everyone,

I had a partial (subtotal) hysterectomy 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% of normal size 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. Final diagnosis confirmed adenomyosis.

My doctor suggested different options for treatment: Mirena (IUD), uterine embolization and surgery as the long-term treatment 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.

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!!!

(It is important for me to clarify 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.)

My recovery is going pretty well so far. But I went really careful about it: did not do anything except lots of walking (at home) for the first 2 weeks. Only problems I had: difficulty to sleep for the first 2 weeks and the leg pain that started on the 2nd week. I was worried at first, but made some research and found out that they were common side effects post-op. For sleeping, I stopped worrying about it and trying to force myself to sleep…. my sleep routine came ]back slowly..

But the leg pain was really bad; walking inside my apartment was not enough. As I read many women having this problem even after months, I was worried. So I walked all the way up and down the stairs of the building where I live (5 storey) several times LOL!. It really helped.

I keep doing this whenever I feel the leg pain coming 

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!

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Add to your wonderful list the savings in sanitary products, you will notice the difference in you weekly budget.  Congrats, and thankyou, you are so correct, exercises do seem to help post any surgery, just don't go overdoing it for a while. 

​Suggestion when you standing at the kitchen or bathroom sink, just do like a double leg curtsey not too deep, multiple times, husband laughs when I doing it, after hip replacements, great exercise for calves and thighs, pushing up your own body weight, keep back straight when doing.

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Thank you lyn! it will definitely make a feeling-good difference for my budget as well! May be I should use that money to reward myself, buy things for myself for fun

Thank you for the suggestion, I will try it!

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Hi, I too have been diagnosed with adenomyosis and fibroids. Dr told me last week I need a total hysterectomy. My surgery is scheduled for April 3. I'm miserable. I have no energy, I'm heavy cramping and bleeding, and feeling awful! I have been dealing with this since January 31! I'm not sure how much longer I can't take and looks like I need to wait 5 long weeks. Any suggestions on how to get some relief until then? I'm taking ibuprofen and pain meds but still feel blah. Any input is greatly appreciated. Thanks for listening....

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Hi Lisa,

I wish I have seen your message earlier... I am really sorry for what you are going through, I can imagine how hard it is and how exhausted you are! It is normal that you feel no energy because you have been bleeding for a long time now. I have always been feeling tired because I had anemia due to heavy bleeding; may be constant bleeding dropped your blood levels below normal as well.

I would suggest you to talk to the doctor and ask him/her to give you something to help stop/control bleeding  until your surgery.  I was using Tranexamic Acid and I've heard many other women using it- one of the most common med to control heavy periods. I was using it during my periods but I've read about women who were constantly bleeding like you using it for several days longer, your doctor should be able to tell.. I also used Ulipristal acetate (Esmya in UK) 3 months prior to my surgery and cause it stops having periods, it helped to improve my blood levels before the surgery, which is good. No need to say I am no doctor but I have the impression that Esmya is widely used in UK. (I've heard that recently a warning was issued about its side effects but your doctor can tell you about it.) You just need  something to ]help you for a few weeks and protect your body from becoming weak.

BTW, did you decide to keep your ovaries or not? That is also an important point to think.

I hope this helps a little bit... I wish you the best of lucks and a quick recovery!!