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Large fibroids, waiting for consultant appointment

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parrysekki
parrysekki

Hi just wanted to share my story, about 2 years ago it was found I had a cyst on my womb and fibroids. I was put forward for ablastion, as I had tried everything else.(Tranexamic acid, mirana coil). I was 48 but my consultant felt I was too young for a hysterectomy!. I was put on esyma to strink fibroids before ablastion, only took for about 6 weeks, don't remeber any bad side effects.Post opp I was fine, very quick recovery.

Fast forward 2 years, went to see contience nurse, as I was leaking urine, and could not hold my urine at times. On the scan it was found I had two large fibroibs, that was a month ago, I have had so much pain recently and yesterday I spent 9 hours in A/E as they thought I had a kidney stone as I was passing blood. Apparently my fibroids are breaking down hense the bleeding and the pain, pain killer were not helping the pain. I am now counting down the days to see my consultant, I'm going for a hysterectomy, I just want my life back and to be pain free. Do they always put you on Esyma pre surgery? and has anyone else had bleeding from fibroids?. xx

0 likes, 28 replies

28 Replies

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  • shelly41626
    shelly41626 parrysekki

    Posted

    Hi. I have a smaller fibroid embedding in the muscle of my uterus and after much thought it was decided between my gynaecologist and i that a hysterectomy was the best option. Its scheduled for April 3.

    I have a LOT of bleeding. I cant control it or predict it. This has changed my confidence, sex life and overall quality of life. I never in a million years thought i would look forward to a hysterectomy but i cant wait. Enough is enough. I wabt my life back.

    I hope things go well for you.

    Shelly

    • heather34376
      heather34376 shelly41626

      Posted

      Hi Shelly, Where abouts is your fibroid situated & what size? Did you consider UFE as an option?

      Regards

    • shelly41626
      shelly41626 heather34376

      Posted

      Hi Heather

      My fibroid was 5mm a year ago. Not sure if its gotten any bigger. For its little size its been causing me all sorts of problems. Lots of bleeding. The gynaecologist did offer alternatives to a hysterectomy but i have other issues as well. I have endometriosis that's getting worse and my cervix is not in good shape. Combine all of this and we decided its time to end the problems. I've had 3 surgeries with him so far to keep me healthy and he cant do any more. Its ok thought. I'm ready now. 😊

    • parrysekki
      parrysekki shelly41626

      Posted

      Poor you, glad you have a date so you can start to plan you recovery. I am seeing the consultant on the 23rd of this month. I need to see my GP now to get some stronger pain killer, as I want to be prepared if I get bad pains again. The bleeding has stopped thankfully, I think it was a clot!.stay in touch.

      Pauline

  • Glennie68
    Glennie68 parrysekki

    Posted

    Hi there! I am waiting for a hysterectomy and I have a super sized fibroid which they are not trying to shrink before surgery. Think it will depend on your consultant and how they plan to do your operation. I know I am having an abdominal hysterectomy due to size/ location of fibroid, I think if you are having a vaginal / keyhole hysterectomy they will probably try and shrink the fibroids first. I'm hoping they sort me soon - getting there though - have pre-op at the end of the week - and after this I will hopefully get my date! No bleeding for me - just back/bowel problems - so can't help you there. Good luck and hope you feel tons better soon!

    • heather34376
      heather34376 Glennie68

      Posted

      Hi Glennie, Can I please ask where your fibroid is, what type & how big? Did your consultant offer you a UFE? Regards

    • Glennie68
      Glennie68 heather34376

      Posted

      Not having UFE Heather. Fibroid is sitting next to my spine under my uterus and is the size of a coconut. I am quite happy for hysterectomy - its causing a lot of pain and severe constipation!
    • parrysekki
      parrysekki Glennie68

      Posted

      Hey there,that makes sense, how they decide on the type of operation, I personally would prefer adominal hysterectomy, I now its a longer recovery but want to protect my pelvic as much as I can (Two children and bladder problems). But I know the surgeon has the final say. My fibroid is on my left side, and it was 5cm a month ago, so not sure if its still growing.  its causing so much pain, so it could be.

      Good luck to you, hope all goes well smile

    • heather34376
      heather34376 Glennie68

      Posted

      Ok. Good that you have made a choice. I understand mine is somewhere betwwen 13cm-16cm but I think UFE may not even be anoption for me. I think I have 2 choicesleft after that both open wither fibroid removal or womb removal, but recoveryis supposed to be quicker with the latter. Best Wishes
    • Glennie68
      Glennie68 parrysekki

      Posted

      Thank you! Let me know how it goes for you! I have the majority of pain on my left side too - still have an ovary on that side - but it's going too. My consultant says it's too bigger a risk for me to leave - I had the right one removed at 28 due to a cyst - and there's a chance this would get cysts on it even after everything is removed - I said fine by me - doesn't work anyway!!! For me I got over the lack of fertility and menopause at 30 - I'm 48 now. Been on HRT ever since. I can understand fully why it's so difficult to decide on a hysterectomy - I went through that lack of fertility upset a long time ago. 

  • patricia27802
    patricia27802 parrysekki

    Posted

    Hi

    I have suffered with Fibroids since 2013 and have had Ablation and UFE. My fibroid has shrunk to 7.5 from 10cm. I have now stated on Esyma as I don't want a Hyserectomy. Hopefully it will shrink otherwise I will wait for Menpause. Maybe you should try UFE next. Good luck

    • heather34376
      heather34376 patricia27802

      Posted

      Hi Patricia, Now that you have had UFE & the blood supply to your fibroid is cut off, does that not now mean its dead? Or does it still have a supply from elsewhere? When Menopause comes what difference would that then make to a dead fibroid? I ask because I don't know & am very interested to find out information. As my gynie has tried the drugs, the implants on me & there is a debate (which has left me very confused) if UFE would have any impact on the size of mine (16cm) though it may help with bleeding. Now I'm in a situation where I may be able to have UFE or if they decide not, then open hysterectomy is my only choice. With a 7.5cm fibroid keyhole myomectomy could now be an option for you. Regards 

    • UFE27
      UFE27 patricia27802

      Posted

      Hi Patricia,

      I had my UFE in July 2016 for multiple fibroids (7 total)  the largest being 6 cms and 6 others ranging from 2 - 4 cm in size and an enlarged uterus.  My largest fibroid which is located at the anterior uterine body now measures 5.4cm x 5.1 cm x 5.9 cm,  so has only shrunk by a few millimetres in 7 months and is still compressing my bladder, the other 6 also showed minimal signs of shrinkage in the 7 months.  The MRI report states they have shown signs of haemorrhage which is suggestive of post embolisation.

      My question to you is if you know that your fibroid has been successfully embolised and is not recevieving blood supply from the uterus, why are you using Esyma to shrink it, is is even possible if they have no blood supply? Did a doctor recommend this to you and say it was possible?

      I'm asking the question because I have now been given the chance for a laparascopic myomectomy or laparascopic hysterectomy.   I have 3 months supply of Esmya tablets that I never used back in May 2016 because I opted for UFE instead, can they now actually still work?

      Hoping to hear back from you.

    • parrysekki
      parrysekki patricia27802

      Posted

      Hi I feel your pain, I had UFE two years ago, It stopped the bleeding but fibroid has contiued to grow. I also had esmya for a few weeks pre procedure. I'm also peri-menopausal so on hrt, so I feel hysterectomy is my best option at this stage.  I really can't take this pain for much longer.

      Good luck too you

    • heather34376
      heather34376 UFE27

      Posted

      UFE27 Ask your gynie regards the Esmya, as it may be the drug you are required to stop b4 surgery. I think Zoladex is what they advise. Ask. But don't be like me to late for anything laprascopic. x

    • patricia27802
      patricia27802 UFE27

      Posted

      Hi UFE27

      Yes I was confused as well. When I had UFE post op 6 months appointment Radiology said that the Fibroid was dead and has no blood supply.

      At Gynocolgy appointment they asked if I wanted a Hysterectomy I said no chance. I asked for a Myomectomy and they said only if you agree in advance to a Hysterectomy. I asked why the Fibroid (I only have one large one) is dead and has no blood supply?

      He answered if you are still having heavy periods then it has an active blood supply. So you could still have a lot of blood Loss. I refused as I don't trust Gynocology to not go straight to Hysterectomy and not even try to do Myomectomy. Why would they? Hysterectomy is easier to do and I am 50. Problem is I would never know so that's why I won't do it.

      I had an appointment with Gynocology 24 April. This time it was a lady and she said let's get you to the Menopause so you can avoid surgery. I agree with her.

      So now I'm waiting for the Menopause or UFE to work. I haven't decided yet if I want another go at Esyma. They must think it could work cos I get it for free and I believe it's quite expensive. So I have 6 weeks to decide if I want Esyma again.

      I have not had a period yet. Since I stopped but I am getting Hot Flushes on and off.

      It's confusing isn't it can't wait till it's gone. But Gynocolgy have stated that the Menopause will Get rid of it. Can't wait for it

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