Large fibroid - first consultant meeting - what should I ask?

Posted , 11 users are following.

Hi Everyone,

I have a 15cm fibroid causing me excessive heavy bleeding, clots, flooding, pain and bladder symptoms. I have my first meeting with a consultant (since being diagnosed) coming up soon, so I want to be prepared for it.

Any advice?

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14 Replies

  • Posted

    Sounds very similar to my issues, my consultant went through all the procedures that you can have. I was given esmya to take for 3 months to reduce my fibroid 5-6cms before my op in november. Hope all goes well for you
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  • Posted

    Hi, I think you need to check out ALL the options available, medication as well as surgery, UFE etc. on here there is lots of information on the procedures. if you take in a list of what you've researched at least you can get their opinion on the Best option for you. Wish you luck.

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  • Posted

    Hi Dani. A 15cm Fibroid you will probably be given only one option. An open Total Hystetectomy with a vertical scar. I had a 10cm Fibroid and the Gyn only offered Husterectomy. I then had UFE done 7 months ago and it has shrunk to 7cm Raiologist said it may shrink more but if it hasn't by 18 Jan 2017 I may need to get a Hystertomy which I don't want even though I'm 49 as I know people who have had lots of problems afterwards.

    If I have to go back to Gyncology if they are still saying Hystertomy only I will still refuse as I want a Myomectomy.

    Also my Radiologist said that when it was 10cm there was nothing else that could be done with it other than Hysterectomy or UFE.

    Ii would just like to add that the Gyncologist will not offer you UFE and will try to talk you out of it so you have to be firm with them.

    If I was going to my 1st appointment my question would be

    Can I have Esyma to shrink this and when it's shrunk can I then have a Myomectomy (if you don't want UFE) if they are still adamant that you can't have. Myomectomy even after its shrunk then I would opt for UFE but only if you don't want children. You are not meant to get preganant after UFE as they don't know if it would harm the baby. Whatever happens good luck

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  • Posted

    Hi, I have a large fibroid which is 9x9cm and had my first consultation with the gynocology consultant last September. Due to the location of the fibroid and enlarged uterus I was initially only offered a hystetectomy which I really don't want.

    He then agreed for me to try the mirena coil which I have now had in since January. I had another consultation a few weeks ago & have had a few episodes of heavy bleeding since the mirena but he wants me to leave it a full 12 months to settle after which I can then try eysma or a UFE so I'm keeping my fingers crossed that one of these procedures works, although I have been warned I will eventually need a hysterectomy.

    Good luck with your appointment.

    Sarah

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  • Posted

    Thanks everyone that's really helpful 😊

    I certainly don't want a hysterectomy as I'm only in my early thirties and have not had a family yet, but I also know that I can't continue to live like I have been over the last few months.

    I'm already taking Esmya as gynae could not get my bleeding under control with the run of the mill medications. I think I'm around one month in but it's not been an easy ride so far.

    D

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    • Posted

      Hi Danny

      Hope your meeting goes well and you stick to your guns about what procedure you would like.

      Consultants and doctors seem to think that a hysterectomy is the best option. I have multiple fibroids the 2 largest at 10 cm and am currently awaiting a myemectomy second time around after constant flooding huge blood clots and discomfort I cannot wait for the op and to go back to living a normal life again. This has been the worst year for me after constant bleeding since April. Let's hope there is light at the end of the tunnel.

      All the best and good luck with starting a family

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  • Posted

    If you're offered a particular treatment ask 'are there any other options?'  Hopefully if they are a good doctor they will present you with the different options available.

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  • Posted

    Hi Danni

    Just read your post. I am 51 and was suffering with heavy periods , clots etc. Went to see my gp who referred me to a gynaecologist. I was diagnosed with a 10cm fibroid. I tried the tranexamic acid approach for 3 months but not much change. I have been taking Esmya since beginning of February and feel so much better. Admittedly i suffered with a few side effects on first 3 months course but the second course has been trouble free. I have one months supply left then have to go for tests to see if it has shrunk. I feel quite optimistic as my tummy doesnt appear to be as swollen! My gynaecologist wanted to try this option first. As opposed to major surgery as he feels i will soon be through the menopause. Fibroids wither away at that stage!!! Anyway best of luck xxx

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  • Posted

    Ask about UFE Danni, least invasive
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  • Posted

    The only thing I was told about myomectomy was that with large fibroids there is a large scaur tissue area, so adhensions are very likely to occur & if other organs start sticking to scar tissue like your bowel thats not good. Research UFE, my gynie offered me UFE, Myomectomy, Esmya, Zoladex & Hysterectomy. He said he'd advise against myomectomy because of adhension I tried 15 months of the drugs with no shrinkage. UFE though it will leave you with a decreased size dead fibroid in my opinion is a good option rather than hyterectomy as for those of us with large fibroids like 10cm & over for example then if we have to have a hysterectomy then keyhole surgery could then be possible with a reduced size fibroid.

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  • Posted

    hello Did you go to see the doctor about your excessive heavy bleeding and pains.you have to think very carefully.do you want to shrink your fibroids or remove yr fibroids to stop the pains or try somes tablets.
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