Fibroids, Prostap and Hysterectomy

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Until last year I had never even heard of a Fibroid and I had no idea what it was, even when I was diagnosed with an 8 cm uterine fibroid it was manageable and something of an afterthought. That was until last October when at work I bled so heavily (huge clots as well) that I went to A & E. They prescribed Tranexamic Acid and Mefenemic Acid to help with the bleeding and I went home. My symptoms just got worse and due to all of the bleeding I became severely anaemic and was so absolutely shattered. I started taking lots of iron tablets but my body just didn’t get the break from the bleeding it needed in order to re stock its iron levels. In May this year I had another large bleed which resulted in me loosing nearly 2 litres of blood and requiring 8 unit blood transfusion. I was in hospital for nearly two weeks and came out with a large list of medicine to take. Currently I am on Tranexamic Acid, Mefenemic Acid, Norethisterone every day with a monthly prostap injection. I have a pre op appointment on Wed for a Hysterectomy and just feel so overwhelmed by it all. The fear of taking lots of meds couple with the fear of haemorrhaging if I don’t and knowing I am scheduled for major surgery is a lot to digest in a few months. Has anyone else had similar experiences? I also have a catheter fitted at the moment as the fibroid has been affecting my bladder. As you can imagine its not an accessory I want to wear at the age of 38. The fibroid has now grown to 10 cms 

Thank you for reading 

 

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14 Replies

  • Posted

    Hi Terrell, Sorry to have a male respond, and I assure you I am not a doctor. I take the time to reply because it seems to me you may be an ideal candidate for a better procedure, a non-invasive procedure, that your ObGyn will not tell you about because he or she loses money since they do not do it.

    Just type in search "UFE" for Uterine Fibroid Embolization. This procedure is done by Interventional Radiologists, also called IR's (not chart readers, these pros are the Navy Seals of hospitals that save patients when other doctos methods or mistakes fail.

    The beauty of UFE is the IR doctor merely uses a very fine guided device that goes up your artery (probably groin) to the source of the problem (where your fibroid attaches), and inserts some fiber slivers to stop the fibroid from getting any blood. Soon after your fibroid should shrink and you should stop bleeding.

    This approach is outpatient. More importantly, it keeps your female parts intact, and all the positive health and mood benefits that go along with it.

    In pretty much every major city and many smaller ones, there are IR doctors who have done many of these procedures, in some cases hundreds and possibly thousands. I also believe that if for any reason the procedure does not address your issue you can always fall back on a hysterecvtomy. But if it was my body, I would absolutely try UFE from and IR first.

    If you feel torn and compelled to go back to your ObGyn, you might simply state you want a 2nd opinion, from a top IR, and who does he or she recommend. Or if you let me know what city you are near I can probably come up with a few IR's who have done many of these procedures. 

    FYI, in Chicago there are several excellent options.

    Good luck!!

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    • Posted

      Hi Bill20925

      Thank you for your reply. I was offered UFE as an either or option with the hysterectomy but with a 50/60 % chance of success plus the chance of regrowth I didn’t see it as the most viable option. I will be asking questions at my appointment tomorrow but the way it was put to me because of the large blood loss I encountered for both peace of mind and possibly best course of action the Hysterectomy was the best way forward 

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    • Posted

      If your ObGyn told you this information it is not credible because he or she does not do UFE and loses money if you go get UFE (ObGyns have too close a relationship with women which can skew a womans judgement). If I can find a way to attach a new major clinical study on UFE I will post it (does anyone know how?). If you are in the UK I believe there are several top doctors there who perform UFE, Interventional Radiologists, IR's we call them, NOT ObGyns.

      It is your body, you do what you want. It just seems like a hysterectomy is a very invasive major procedure, and this forum site is littered with testimony from women who had had bad experiences with hysterectomies. I'd rather keep my parts and try UFE, and if things come back later, do it again. 

      Good luck with your decision! I hope things turn out well for you.

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    • Posted

      I'm in the uk.  Agree, I was offered a hysterectomy as a first option until i asked about other options.  I then asked to have an MRI and got one but wouldn't have if i didn't ask. I will avoid hysterectomy unless it's the only option left.  It's great if you have a choice, all women should firstly ask what are their optiions.  I now myself, i tend not to speak up as much as i should but i am learning.  We have to learn to be more straight talking with our doctors. As my gp told me 'it's not compulsory, it's your choice.'

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    • Posted

      I was just searching online for an unrelated ailment and ended up seeing if interventional radiology had a procedure for it. In the process I came across a link which all women may have interest in reading. go to sirweb.org. This is the Society of Interventional Radiology association home page. Look on the left side of the home page and click on "uterine fibroids".

      This may provide basic information, but it may also provide women with more knowledge and greater confidence in making whatever decisions you choose to make.

      I also searched "interventional radiology studies for UFE", and many good links came up for you to consider reading.

      Lastly, type in bsir.org. This is the British Society for Interventional Radiology. For those of you in the UK, it should help you find top IR professionals who have done many UFE procedures. I suspect you need to go to doctors who have done at least 30 or so UFE procedures (the more is probably the better) so they have enough experience.

      Good luck! Bill

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  • Posted

    Hi

    I have over 25 fibroids the largest the same as yours.I was prescribed the same medication as well as having the Zoladex injection.Nothing worked.I have a week bladder because of the fibroids.I went to see a gyne who just wanted me to have a hysterectomy.

    We kind of fell out on this and I opted fpr a fibroid embolization.I too suffered from a weak bladder and it took over mt life.I would go out and have to keep looking for the nearest toilet.I had the surgery around six weeks ago,I had to stay in hospital over night.I no longer need to go to the toilet all the time and my periods seemed to have stopped.

    Please do not let anyone force you into having a Hysterectomy there are other alternatives.

    Love Millie

     

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    • Posted

      Hi Millie 

      Thank you for replying, Sometimes I do feel like the decision has been made in such a short space of time however whilst I was in hospital it was an extremely scary time. When I had the large blood loss I think I have been left slightly traumatised by it (sorry to sound dramatic) and that is a contributing factor for my decision to undergo major surgery. I did think about UFE and whether it would be better for me but the fear of it returning or not working and going through that experience again terrifies me. I will ask lots of questions at my appointment however my consultant did say I was making the right choice with the hysterectomy but maybe they always say that. My problem is not a weak bladder but retention as my bladder stops working, I have had to have an emergency catheter fitter twice in A & E due to the fibroid and they made the decision on the last visit to leave it in until it was decided what further treatment was needed. To date the catheter has been in for over two months.

       

      How did you find the actual treatment of the UFE? Did you have it done as an outpatient and did they manage your pain well as I have heard the process can be like labour/

       

      I hope you are doing well and thank you again for responding

       

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    • Posted

      Hi

      I have a fear of hospitals so I was in panic mode when I went to have my UFE.The doctor and the staff were really nice to me and the procedure was a little uncomfortable but I had a morphine drip so my pain was managed.I have never had a baby so can't say if it was like labour.They make you stay in hospital over night  and I am fine now.

      All the best Millie

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    • Posted

      You've had a scary time, so understandable you feel the way you do, can you get a second opinion if you feel unsure?  I did within the same hospital and got a different opinion and treatment.

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  • Posted

    Dear Terrell69155,

    I am sorry to hear that you are going through this.  I am 48 years old and have been dealing with fibroids for a few years.  I do not have any pain or trouble with urinating or bowel movements.  My problem is severe bleeding, but only occassionally.  To battle this, I have been taking fish oil, 2,000 mg. a day.  I swear it has been helping. Fish oil is an anti-inflammatory, which I am hoping will shrink my fibroids. I also take 56 mg. of iron, because my hemotologist told me that sometimes when you are low on iron, it can make you bleed more.  I am waiting for menopause because they say that fibroids usually shrink during menopause and then they are not an issue.  I have noticed that taking Vitamin D and not drinking beer at all has helped.  They say that beer messes with your estrogen which apparently is fibroid related.  The last thing that I have done recently is stop drinking coffee, which was just one cup a day, and switched to green tea.  Again, green tea is supposed to be an inflammatory.  I really believe that it has been helping me.  I wish you luck.  It is very frustrating and I wish more women would talk about it because many women have them.

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    • Posted

      thanks for this advice, i have been bleeding most days for 2 years, had a myomectomy, still a problem. I will try you fish oil advice.  I don't drink alcohol not a problem on that score.  Do you take a particular fish oil, in liquid or capsule?  Many thanks.  Anne.

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    • Posted

      Hi anne05147,

      I take liquid capsules. I buy them from a store called Whole Foods. I do not know if you have that store where you live, but I do not think that matters. Also remember to drink green tea. I drink one cup a day. Please let me know if it works for you so we can spread the word.

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    • Posted

      Will do, sorry to be pedantic, but are they just called fish oil capsules, or a particular fish oil like Omega 3, or just plain old cod liver oil.  Thanks for the advice, I will get some and let you know how i get on.  Anything that can help us is good news.  All best wishes.  Anne.
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  • Posted

    Sorry to hear you've had such a time of it.  Hope you get some effective treatment soon.  All best wishes for a speedy recovery.  Keep asking questions, it's the only way to get answers and find out as much as you can, but for some women they tell me hysterectomy was the best thing for them.

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