Large Fibroid & mirena coil

Posted , 9 users are following.

I have a large 9x9cm fibroid and had a mirena coil fitted 10months ago to try and reduce my ridiculously heavy/clotty/prolonged periods.

The first few months I saw an improvement but since June my periods seem to have got heavier again with random bouts of clotting. Saw my constant at the end of August & was told to wait till I have had the coil a year. It's really getting me down &.has an impact on my work & social life. Anybody had success with the coil for fibroids? I'm afraid my next step would be hysterectomy as loathed to try another temporary measure. I would welcome any advice. Thank you

1 like, 15 replies

Report / Delete

15 Replies

  • Posted

    You could have an hysteroscopy and myomectomy, I understand that anything below 10 cms can be removed via a hysteroscopy rather than abdominal incision, I had one removed this way.
    Report / Delete Reply
    • Posted

      Hi Anne,

      Thanks for your reply. I have been told that due to the size and location of my fibroid that the only remaining options are a hysterectomy or UFE and because the UFE is not guaranteed to work & is not always permanent I'm loathed to try the procedure, but am very reluctant to agree to a hysterectomy.

      Report / Delete Reply
    • Posted

      I'm in the same situation but fibroid is 13cm, havent had coil as they say too difficult to put in due to large bulky uterous, I went for a consultation re UFE but there were differing opinions as to weather it would work or not. I have been told that a myomectomy for me wouldn't be the best option as my fibroid is in the wall on the lower posterior, so if removed would leave scar tissue that the bowel could stick too. I have to book another scan but looks like on ioption for me is hyterectomy too.

      Report / Delete Reply
    • Posted

      Hi Heather,

      Yes my fibroid is in a similar position & has caused my uterus to become enlarged & mishaped.

      They were unsure as to whether they would be able to place the coil becuause of this & the procedure was done under GA.

      I have been told to give the coil a year to settle (which will be January 2017) and then make a decision about the next step.

      Not looking forward to making the decision though!

      Report / Delete Reply
    • Posted

      I am not on anything to prevent it growing. The only thing that I have heard of that can stop fibroids growing is Esyma which can only be given as a temporary measure &.growth starts again once the drug course finishes.

      I have given up caffeine & reduced dairy products in an attempt to reduce the size but this hasn't worked.

      Report / Delete Reply
    • Posted

      HI,

      For what its worth there are a umber of drugs, I've had them & they didn;t work for me.

      I've had Esmya 3 times (9 months in total) & I've also had Zoladex implants (you can also have other drugs like this which basically brings on a temporary early menopause) x

      Report / Delete Reply
  • Posted

    Hi Sarah,

    I have a similar sized fibroid, unfortunately my coil was displaced by the fibroid and I needed surgery to remove it. My understanding is that with a fibroid anything over 3cm should only be inserted under ultrasound or by gynae for this exact reason. Apparently it's quite a common occurrence for people with fibroids.

    If you haven't done so already, I'd ask your GP/Gynae to check the placement of the coil to ensure that it's still in the correct position.

    I thought the coil was great in managing my symptoms though and would take another if they allowed it.

    Report / Delete Reply
    • Posted

      Hi Alba,

      I had my coil fitted under GA due to the size of my fibroid.

      After my first episode of heavy bleeding my GP thought the coil may have moved & arranged for an ultrasound. I then saw the gynaecologist & they checked that the coil is still in place.

      He told me to wait a full year to see if things settle.

      Overall my bleeding had decreased to the point that I don't have to take tranexmic acid every period but I still do get short bouts of heavy bleeding.

      I still take iron tablets I will have my iron levels checked again in the new year & decide where to go from there.

      Sarah

      Report / Delete Reply
  • Posted

    I had it and it helped for about 2 years before things got bad again. But when I had it removed the flooding was unprecedented. So it had actually still been helping but it could only do so much against the flow. Then Had ufe and it took about 6 months but everything is great now. 1 flooding day but the rest is light and only lasts about5 days. Versus the 12 before.
    Report / Delete Reply
  • Posted

    hi sarah  i am seeing the specialist next wed with reguards to my reults and looks like i may have to have the coil fit   could i just as if it is painful as i really dont know what to expect ?  many thanks
    Report / Delete Reply
    • Posted

      Hi Diane, sorry only just read your question as email had gone into junk.

      You have probably had your coil fitted by now so hope everything went ok & you are recovering well.

      I had mine done under GA alongside a hysterscopy & biopsy so can't comment on pain during the procedure. I was sore & bloated for a few days afterwards but nothing too bad.

      Sarah

      Report / Delete Reply
  • Posted

    Hey Sarah.  I see that it had been about a year since you posted, and I was wondering what course of treatment your doctor pursued.  I was diagnosed with a smaller (4”x2”) fibroid two years ago by my gynecologist. It was discovered because the Mirena they prescribed to control my heavy bleeding was rejected. They performed an ultrasound and found the fibroid.  I was placed on an oral contraceptive and saw the same results as you, improvement over the first few months and then my bleeding worsened.  I was anemic and spending two weeks/month bleeding, clotting, and in pain from cramps.  I was then prescribed Nexplanon with the same results again. This time, however, the bleeding did not stop and I was admitted to the ER for hemorrhaging. I needed three units of blood to get my hemoglobin count even close to normal. My body was trying to rid itself of the fibroid, and ironically, I was put in a life threatening situation.  I learned that day that while birth control can be used to slow or stop bleeding, it can also cause a uterine fibroid to grow.  The prescribed contraceptives made the fibroid grow to 6”x4” and my uterus to swell to twice the normal size.  This swelling caused issues with my colon and bladder that I had no idea were related to the fibroid. I eventually got a hysterectomy, and my health has improved greatly.  If you are still dealing with this, I hope what I have written helps. 
    Report / Delete Reply
    • Posted

      Hi Angela, 

      It is uncanny that you have just posted as I have just  come off the phone with PALS.  As I am now awaiting abdominal hysterectomy (consultant advised me the wait & watch approach & consider Embolization but I decided against this) I was supposed to be placed on waiting list for hysterectomy in June but following a mix up with paperwork this wasn’t done till August. My breach date is 6th December but I have been informed my trust is breaching so surgery will not be until the end of January....I will now be counting down the days till I feel confident leaving the house without fear of flooding.

      I am hoping to keep my ovaries and probably cervix. 

      Glad to hear you are now feeling bettter after your awful experiences. Can I ask did you keep ovaries and or cervix or have total hysterectomy?

      Sarah 

      Report / Delete Reply
  • Posted

    Hi Sarah,

    Me again after about a year, even though I've had more drugs we are still both with fibroid. Mine seems fairly constant size at 13cm, no matter what I do. I'm 47 1/2 now. So here we are hysterectomy looming, though I've developed another more time critical issue which can seemingly happen/grow during pregnancy or when hormones are raging. Not knowing why a muscle cell goes rogue & causes a fibroid, I'm thinking hormones play a large part but I'm no scientist. However having had one of these & being told leave it, I'm now not sure that that is the best advice at all. Does having/leaving a fibroid increase your hormone levels? I don't know the answer to that but I'm suspecting it does. Anyway all that said, I have a few back issues (prolapsed disc ect) so my gynie (well one of them) as suggested robotic keyhole to minimise the impact on my spine. Though physio & exercise I think goes a long why to stabilising the core & I don't think I should worry too much about destabilising my spine, as it can't be good for my body, hips, knees, spine or abdomen carrying around a melon which must weigh quite a bit. So keyhole must be possible for big fibroids, in the right specialist centre. Benefits to keyhole, less flesh, muscle wound so you can be active quicker, (I don't mean lifting/straining) but walking etc, less chance of clot as less tissue cut, smaller incisions. However for me I have had a C Section so they will be internal adhesions already, to what who knows but a keyhole surgeon, well any surgeon for that matter would have to be extra careful not to damage the bladder. Cons - longer on the operating table, therefore patient inverted for longer. One of my employees wife/s had keyhole & they didn't get "it" all so she had to have a second op! New scars for me as I have a C Section scar already. Of course a big downside would be, that they start keyhole & have to do open anyway so could end up like patchwork quilt!

    Open - quicker, so less time on operating table, not as inverted for open & not as long, probably same scar though they may have to go vertical. Cons, more tissue damage, more chance of clot & adhesions, longer time to get active, more pain.

    I really don't know what ever way we look at it, a hysterectomy is a major operation but this is the way that I am being advised to go. And to be fair to my medical practise, doctors, consultants etc, its not as if they haven't tried other options for me. If I had to go through it again I wish they'd given me more options when they first found it, eg myomectomy when it was smaller. Though of course I did get pregnant & go full term with my son whilst having a very big in fact some would say enormous fibroid. Though my medics were keen to say you are 36 (which I was at the time) time is not on your side to have a procedure, wait for healing & then try) just try for a baby & see what happens though your chances are slim. So my advice for what it's worth to anyone with a fibroid for what it's worth would be, if you want a baby & are older try for one, if you are younger maybe consider a myomectomy, but UFE is not for anyone thinking about children in the future. If you've had your family, try the least invasive ways first, (Eg UFE/Drugs) But appreciating some people don't like the drug route, or the thought of UFE, then myomectomy (if the fibroid is not too big or in to tricky a place) If you are older (like me) have explored all the options, then its either put up with the life & side effects it gives or hysterectomy.

    Whilst I appreciate Sarah you like me are now at hysterectomy stage, the question is ovary's cervix as well or not. From what I can gleen & from 5 different gynie consultants opinions from North, South & West - they seem to say it takes a skilled surgeon to remove a cervix. Why keep it? They say bladder prolapse & sexual dysfunction are myths when removing cervix. They say its another place that can get cancer & that 1 in 4 go on to get it removed at a later date. So it's an individual choice & one that's not forced though I think my choice would be remove it. Ovaries, again many of us have cysts on our ovaries, if you do there is a fair chance they will remove it when you are having a hysterectomy, but if you are under 50 & have a healthy ovary or ovaries there is a fair chance they would leave them, if you had agreed that before hand. I have one with a cyst & one (I think) that is fine, but it may be that they can't see it because of the fibroid. If they both have cysts that'd probably be removed.

    I have a complication that I can't have my head down for too long, I have a complication that I have sticky blood, another tumour elsewhere & a liver cyst that has grown dangerously (maybe because of Esmya/Zoladex) I really don't know but what I do know is that it will probably mean I cannot have hrt once I've had a hysterectomy, so it's certainly not a straight forward decision but a one that unfortunately seems necessary. I'm sitting today & have been for the last 10 days dreading the start of my period (only had one since been off last course of Esmya) so could be that body is settling down again. Though I worried about a train shopping trip away, a school trip, a leisure centre trip, a Santa visit, all these things I have had to plan in advance, but I cannot guarantee when my period would come, day 2/3 &even 1/4 are bad enough that it can require a bathroom visit every 5/10/15 minutes. This just can't happen on a school trip, or in a swimming pool etc etc so I either live life worrying about that & have to cancel those things I've maybe arranged/paid for that I just can't do or do something about it. So you have to take each thing into account for your own individual & circumstances, then just do it. I'm off to see a specialist keyhole surgeon for his advice on the hysterectomy I'm told I will need & then, my decision will be made for me. It's no fun having this extra pressure on my hips, back, knees etc, who knows if getting rid of this will help, but it bound to help my bladder, if I can re-train it! As long as it doesn't get damaged.

    God bless us ladies!

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up