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Multiple Submucosal uterine fibroids. Advice please?

Posted , 10 users are following.

Kate4611
Kate4611

Hi.  I've come out of having an exploratory for menorrhagia that I've had for nearly a year and have been told I have about six small ish submucosal uterine fibroids.  I have had a biopsy and a surgeon said they could be left in or shrunk before surgery to remove them.  Please can both professionals and ladies who have this help as there are many options and I have had bad side effects from contaception used to control the menorrhagis when I was in my twenties, I'm now forty two.  I would ideally like to find some medication that could shrink the polyps so I can avoid very heavy blood loss, vomiting and diarrhoa and anxiety or depression.

I suffer from some anxiety and deoression and don't want to have any more and have read about the side effects of the mirena coil and zoladex.  Does anyone know of a safe alternative please? 

I've read that the progesterone only pill may be effective or Esmya? 

Thanks.

 

0 likes, 31 replies

31 Replies

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  • jaspy
    jaspy Kate4611

    Posted

    In my experience the progesterone pill made the bleeding a whole lot worse. Esmya stopped my bleeding but didn't shrink my fibroid - I had 1 very large one.

    I know for other people it has caused shrinkage.

    On Esmya I only had one breakthrough bleed roughly when my first period would have been due. It lasted one day. Then I just had a little spotting.

    I had my fibroid removed last week by TCRF. I feel like me again, although I know they can grow back.

    • Kate4611
      Kate4611 jaspy

      Posted

      Hi.  Thanks.  Sorry, what's TCRF please?
    • jaspy
      jaspy Kate4611

      Posted

      Transcervical Removal of Fibroid - basically the fibroid is removed by an operation through your cervix where it is shaved away using a hysteroscope and equipment to remove it.

      I had a hysteroscopy first to get a clear view of what was there.

      Everyone was so good in the hospital.

    • shivani02101
      shivani02101 jaspy

      Posted

      Jaspy I had the same procedure - they called it hysteroscopic something. Too many terms :-) 
  • shivani02101
    shivani02101 Kate4611

    Posted

    Hi Kate

    I recently had a hysteroscopy as I had one sub-mucosal fibroid (in a addition to several small others which werent causing any issue). Post this minor surgery my surgeon put me on a three month course of esmya. I just had an ultrasound and the esmya has shrunk these other fibriods quite a bit. This doesnt mean that the problem is sorted because fibroids can grown back and esmya can be prescribed just once under current rules (it is still a relatively new drug). 

    Esmya does have a number of side effects - I got tiredness, increased vaginal discharge and extreme anxiety and depression. Also, esmya put you in (like a) temporary menopause like situation and periods return after 6 weeks or so. My periods returned to normal. 

    If the fibrioids causing you blood loss are small, why dont you go in for a hysteroscopy - it is non-invasive and you are out of hospital the next day. 

    This may not help but many women suffer from fibrioids, You are not alone. I suffered from heavy blood loss (my hemoglobin went down to 5.5) and went through the lowest period of my life - though I am recovered, my anxiety has not gone away and I am now in counselling. Talking helps. And know you are not alone. 

    • jaspy
      jaspy shivani02101

      Posted

      I think Esmya has different side effects for different people. I had no anxiety/depression but had suffered awfully with that on tranexamic acid to try to stop the bleeding.

      You are so right talking helps so much. Theses forums are such a help in that way.

    • shivani02101
      shivani02101 jaspy

      Posted

      I was given tranexamic the night before the surgery on IV and it made no difference (as in it did not stop the bleeding at all!) but I hated the side effects of Esmya - thank god it worked!! 

      And yes Esmya impacts people in different ways. My GP told me that they are still building the list of side effects as the drug is so new. 

    • Kate4611
      Kate4611 shivani02101

      Posted

      Thanks.  The issue is that the fibroids have been discovered and the doctors thought they were polyps.  I am researching ways to shrink them as this is the course of action or I can leave them apparently.
  • Ginagirl
    Ginagirl Kate4611

    Posted

    Firstly it depends if you want children? This alone whEn you have Fibroids can cause  miscarriage problems.. Oestrogen makes the fibroids bigger as it is a hormone.. I however had three pregnancies two full term my last child was small and luckily she survived.one in the middle I lost at 6 weeks.. I had 5 fibroids the size of oranges. And eventually had an Abdominal hysterectomy leaving the ovaries..this was the best thing I ever did at 40 this may be your best option. I suffered Menorrhagia with huge clots.. Which made me very tired due to excessive blood loss.I had bloating and looked 5 months pregnant  most of the time.. Even though I was not. I have suffered in the passed with PMT.. Coil if you don't want anymore may just aggrevate things.. There are Meds that will shrink the fibroids but ultimately  can help short term.. But I was glad I had a hysterectomy.. Solves a lot no more menstruation or bloating or pain..
    • Kate4611
      Kate4611 Ginagirl

      Posted

      Hi.  Thanks ladies.  I have extreme blood loss that is being helped by Tranexamic Acid but is very heavy still with bad clots and when you're working it's horrible. 

      I'm not sure about children that's why the hospital are careful with what to prescribe.  They womdered about the mirena coil but woemn are very anti and zoladex so I don't know what to try.  Am researching and hoping to get advice.  I'm grateful.

    • jaspy
      jaspy Kate4611

      Posted

      Kate I had clots like golf balls on tranexamic acid - and it made me feel like I was losing my mind. I have never cried so much!

      I think the specialists very much look at whether you want to try to get pregnant or not and the effects treatments may have. My surgeon said he could be a lot more aggressive at removing my fibroid because I will have no more children. I think it meant he could try to go deeper into the womb wall to get the root of the fibroid.

      Esmya can now be prescribed for 2 lots of 3 month cycles if you have a break in between.

    • Kate4611
      Kate4611 jaspy

      Posted

      You poor lady.  I sympathise with all of you.  You're brave.  It is helpful to talk to others about their experience.
    • Kate4611
      Kate4611 jaspy

      Posted

      I would like to avoid the vomiting, diarrhoa, anxiety and depression and have the fibroids shrunk and removed by surgery if possible.
    • jaspy
      jaspy Kate4611

      Posted

      I'm enjoying eating without already feeling full and having a bladder that can hold more than a teaspoon full.

      I found it was the iron supplements that made me feel bad (diarrhoea) until I found Spatone iron rich mineral water. Tastes abysmal but so much gentler on the insides!

      I hope you get treated quickly. X

    • Kate4611
      Kate4611 jaspy

      Posted

      Thanks.  I hope you are ok and that the fibroids stay away.
    • shivani02101
      shivani02101 jaspy

      Posted

      I had to get two iron infusions (I refused blood transfusion). I have spinach everyday (nutribullet smoothies) with kale and that has really helped. Plus it help the skin glow :-) 
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