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Adenomyosis ? ? ?

Posted , 6 users are following.

michelemuffin
michelemuffin

I am 44 and very overweight and been have very heavy bleeding for over a year now. I was diagnosed with fibroids in 2011. I went and seen a gyno yesterday and she said I have a mass that appears to be a large fibroid and she wants to remove it surgically ASAP. She also said she thinks I may have Adenomyosis and did a biopsy so won't know for sure and said if I wanted to have a hysterectomy that would be my decision. I am so confused as to what to do. I read that a hysterectomy is the only cure for adenomyosis. I am terrified if being put to sleep on top of that I have anxiety and high blood pressure which I take medication for. Has anyone else gone through this ? Any advice would be appreciated. Thanks.

0 likes, 14 replies

14 Replies

  • aged-too-fast
    aged-too-fast michelemuffin

    Posted

    I had a hysterectomy and, frankly, it's caused a whole new set of problems and I've discovered that more may continue to crop up down the road. I didn't have fibroids or adenomyosis but I would avoid having any parts removed if I had it to do over. I was sorely misled about the effects of the surgery and my need for it.

    Have you tried a hormonal or non-hormonal medication to treat the bleeding? I don't know the effect of hormones on fibroids and adenomyosis although it seems estrogen in a combo pill could feed the fibroids...not sure about a progesterone-only pill. But there's also a non-hormonal med called Lysteda / tranexamic acid in the U.S. that I believe is available there. You just take it during your period. Medical literature says it can reduce bleeding 58%.

    I assume your doctor checked your iron and you're taking iron with vitamin C if your levels are low?

    There are procedures to remove just the fibroids and some surgeons can even remove "pockets" of adenomyosis without removing your uterus. That way you get to keep its non-reproductive functions such as anatomical, skeletal, sexual, and hormonal integrity.

    Best of luck in getting treatment that restores your health versus causing a whole new set of problems.

    • michelemuffin
      michelemuffin aged-too-fast

      Posted

      Hello there . why did you have a hysterectomy ? They did check my iron and it was fine. I am waiting in my biopsy results to come back to see if a hysterectomy is a better option for me .
    • aged-too-fast
      aged-too-fast michelemuffin

      Posted

      My sex organs were removed for a complex cyst. Even though the frozen section biopsy done while I was in the operating room was negative / benign, my surgeon continued removing my sex organs.
  • olivia1993
    olivia1993 michelemuffin

    Posted

    Hello I am 23 have similar issues and I am undergoing a hysterectomy in 5 weeks I have been bleeding for just over 3 years now, have tried everything- have the suggested zoladex ? It is used to shrink tumours and normally stops bleeding as it puts your body into a false menopause.
    • michelemuffin
      michelemuffin olivia1993

      Posted

      Hey Olivia.....wow you are young too be having a hysterectomy . I hope all goes well. All I have been taking is provera but just have 2 left and she told me to finish those so idk what else she will do. I am waiting on my biopsy results to come back. Are u overweight as well ?
    • olivia1993
      olivia1993 michelemuffin

      Posted

      Yes but I have a few other health issues aswell

      Chronic pain, vuval issues but hysterectomy is needed it's horrible to be bleeding all the time you just never feel nice, I am but actually lost weight because one gynocologist said it may have something to do with it but bleeding didn't change, they have said I I have adenomyosis ao after operation will be interesting to see if I do

    • olivia1993
      olivia1993

      Posted

      I definetly think zoladex may be helpful for your bleeding and fibroids but does have side effects but worth asking your doctor
    • olivia1993
      olivia1993 michelemuffin

      Posted

      And because of the bleeding for 3 years and having no way to stop it, also had cysts, have polycystic overies, endometriotis, I have chronic vuval thrush which can't heal because of the bleeding is agrivates because of wearing pads which makes the chronic pain and vulvadynia worse so was for a lot of reasons but I just can't bleed anymore I am exhausted from it and it's hard to believe this day and age there is nothing that can stop it

    • michelemuffin
      michelemuffin olivia1993

      Posted

      Oh okay. I understand. I wouldn't wanna bleed anymore either so I have to really think about what is the best decision for me.

  • susan39623
    susan39623 michelemuffin

    Posted

    Hi I had a TAH April last year with everything taken away , I am 63 and had large fibroids and cancerous cells in my uterus.I am very overweight have diabetis and heart failure.My surgeon explained that I would have problems with healing but they could deal with that after my op.I had my op and other than getting a number of infections and having it dressed ever day for 5 mths which was a pain in the backside I have sailed through it with no pain at all.I had 3 radiation treatments as a precauti on and go to see oncologist ever 4 mths for checkups .Hope you can come to the right decision for you.
    • lynda20916
      lynda20916 michelemuffin

      Posted

      Hi, Michele, 

      Sorry to learn you're going through this.  A TAH is a total abdominal hysterectomy.  A TVH is a total vaginal hysterectomy wth the female parts removed through the vagina.  I think that your doctor is very concerned about you, and is offering what he/she believes would be of the most benefit.  

      There have been major advances in treatment over the last 10 years, including advances in female surgery and cancer diagnosis and treatment.  I'm sure that your doctor is very well versed in the options available to you, but you should discuss alternatives and outcomes with your doctor. If you are uncertain, then seek a second opinion, also from a doctor.

      No one on this site (as far as I know) is a medical doctor, they have some knowledge and experience.  And, I'm sure that no one would ever want to give advice that could result in another person refusing treatment and ending up critically ill.

      Please partner with your doctor and make a decision that's the best for you and your health--I urge you not to delay, especially not because you are afraid.

      Best of luck to you, and let us know how you do!     

  • aged-too-fast
    aged-too-fast michelemuffin

    Posted

    With all this bleeding you and Olivia have had, have you both been checked for a bleeding/clotting disorder? It seems many gynecologists fail to check for that. I would think some basic tests are all that's needed but not sure about that. A hematologist would be the specialist to see if you want to pursue it further. Best of luck to you both!

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