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Due to have UAE

Posted , 11 users are following.

annie65607
annie65607

I'm a 51 year old with two large fibroids 9 and 10cm diameter . The latter causes me bladder blockage and have suffered with UTis  for over two years until diagnosis of fibroids after ultrasound and MRI. I was offered hysterachtomy but decided to go for a second opinion and have now been offered UAE. I'm due to have treatment tmrw and thought I would document my experience here for others that might be in a similar position. I've never really had the heavy flows that others experiene until recently bleeding for 3/4 weeks but I'm pretty sure this is due to peri menopause symptoms. I do have to self cathetize now as the fibroid has grown rapidly and completely block my uretha. I'm hoping that the fibroids will shrink enough to cease my symtoms and then as I'm  about to hit menaupuse might shrink naturally after. I do have an extended uterous of a 22 week pregnancy so hoping that will eventually go down to. The other fibroid is penduculated and is not being treated so will see how I go. I've found reading some of these posts has given me courage to make this decision withou evasive surgery thank you. Will post update on recovery soon 

3 likes, 43 replies

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  • toni44td
    toni44td annie65607

    Posted

    Hi Annie,

    Thank you for your kind words.   From what I remember I just had a pulling sensation, no real pain as such during degeneration.  I have been drinking green tea, dandelion tea and peppermint tea for 2.5 years as I read somewhere caffeine helps the fibroid grow.  Also, I tried Apple cider vinegar with black strap molasses and Esyma which was prescribed from the hospital.  Unfortunately, nothing really helped shrink the monster!!!  The odd thing is now I can't stand the taste of the teas!!!  Give me caffeine!!!

    All the best and let us know how you get on xx

    • annie65607
      annie65607 toni44td

      Posted

      Ah Toni, Thanks for feedback that does sound similar to what I'm having,

      You made me laugh about the teas yes I do know the feeling about trying anything herbal although I'd happily swap the caffeine for a glass of prosecco these days...we have to live and be happy too don't we ! Speak soon and thanks again for the support x

    • toni44td
      toni44td annie65607

      Posted

      You're more than welcome Annie.  I can't wait to be off the pain meds and have a lovely cold glass of wine!!!

      Best wishes Annie xx

  • murnaloo
    murnaloo annie65607

    Posted

    Hi Annie,

    I hope your YFE has gone smoothly today. The pain doesn't last long, in my experience. The drugs help a lot too.

    We could be twins - your situation is identical to mine. I only complained about increasingly bad urinary symptoms, not periods, although those did get a bit heavier.

    I was treated like a hypochondriac for five years until urinary retention landed me in hospital twice. I finally had a scan. My fibroids were 10 & 8 cm. I had UFE on 21-12-15.

    Today I had my six-month follow-up and the fibroids have shrunk 70%. Unfortunately, I still have the constant feeling that I need to pee. I'm upset about this. I've had no episodes of retention since January, though. I do have some days where I feel almost normal, which is better than before.

    I'm not sure what I'll do next about the bladder issues, but I do think UFE helped - I no longer worry about getting retention.

    Keep me posted about how you get on. Most people seem to talk only about periods, not bladder issues.

    • annie65607
      annie65607 murnaloo

      Posted

      Thanks Murnaloo,

      It's reassuring to hear your experience is similar is to mine although I would not wish it on anyone. shrinkage of 70% is quite positive. I just hope mine

      shrink enough so that I can pass urine normally. Early days still so will wait and see .

    • murnaloo
      murnaloo annie65607

      Posted

      Hi Annie,

      Just wanted to share one more thing. I continued to have urinary retention for about a month after the UFE, although not every day. I was so devastated by this and I assumed it meant the procedure hadn't worked. My husband called the doctor almost every day because I was so upset that the retention had diminished at all. The doctor told me that it's fairly common for women to experience increased retention for the first few weeks -- even wome who weren't having retention before -- and that it would subside. He was right. Even though I still have a feeling of frequency, my urine stream is strong and not blocked. This did not happen overnight. My doctor got very frustrated with me in the early days because I expected to fee better so quickly. He told me the key is patience. He was right about that, too. Very had to hear when you've been suffering so for so long, but your ability to pass urine will improve with time. Hang in there! And keep me posted!

  • ali46487
    ali46487 annie65607

    Posted

    I hope it went well for you, I had mine last Thursday, unfortunately I wasn't given the option of a hysterectomy given the choice I would have taken that route as once it's done, it's done. Mine were 6cm in diameter but numerous and my womb was the size of a 22.5 week pregnancy, I am also hoping this will shrink. I didn't have bladder blockage but it only had half the space it should so no long walks without a loo enroute etc. Halfway through my op the viewing screens went bland and could not be brought back to life so they had to take the decision to end it there. The op itself was fine, relaxed and pain free thanks to a Fentanyl pump in my control which I could activate every 5 minutes for a measured dose. Post op I had to lie flat for 2 hours in recovery before being taken to the ward. I kept the pump overnight, but i also had to have oxygen overnight as my resperitory obsevasions were low. The day after I had an horrendous headache, nausea followed by being sick, literally everything that went down promptly came back up. I also have had increased flushes and sweats, day and night. I had to have an extra day in hospital due to the sickness but was allowed home on Saturday afternoon. Since coming home the slightest thing leaves me exhausted and I still feel nauseous on and off. I mainly get the cramps when I try and do something like walk upstairs, but have a constant tight pulling sensation and soreness when I turn in bed. I think their estimate of 1 to 2 weeks was great initially, but I am finding this is probably not going to be the case reading other people's experiences. The thought of having to have it done again to finish the job, fills me with dread, by the time I go through it again the recovery from an hysterectomy would be done and I would not have the worry of potential infection or re growth. I do feel let down in that as the person living with this very enlarged womb that was causing me pain and discomfort I should have been given both options. I am now looking in to agoung private for a hysterectomy. I hope your operation has gone well and you recover well x
    • farida2
      farida2 ali46487

      Posted

      Dear Ali, we women go through a lot, I hope you get better soon. I haven't had the UAE yet I am on a waiting list! To be honest I am worried to do it and then regret that I did not do the hysterectomy! x
    • ali46487
      ali46487 farida2

      Posted

      Given a choice I would choose hystorectomy everytime, but everyone must make their own choice, sadly this was my only option x
    • murnaloo
      murnaloo ali46487

      Posted

      I had UFE in December and found the procedure and recovery very tolerable and short. I sometimes wonder if only those with the worst experiences go online and discuss them.

      I had excruciating pain within 30 minutes of the procedure finishing, but it went away seconds after I was given pain meds. For the first night I had pain off and on, but it was under control with the self-pump. I never had nausea. I spent two nights in hospital, but could have gone home after the first day. Once home, I slept slightly more than usual, but was walking five miles a day again with a week. I would characterise the first week as just feeling a bit lethargic. By the end of week 2, any effect I had from the UFE was long gone. I did not take even one of the pain pills that I was sent home with. I think I took paracetamol for one day, but that was more in anticipation of feeling achy than actually feeling achy.

      I appreciate that everyone has a different experience, but I do think online forum are skewed to those who've had a bad experience. Just wanted everyone to know that for some of us UFE was a very easy procedure.

      Even though the UFE shrank my fibroids 70%, my bladder issues have not gone away and I may end up having a hysterectomy after all. However, multiple doctors have told me that a hysterectomy will be an easier procedure with such smaller fibroids. So, the UFE was helpful and I would do it again without a doubt.

       

    • annie65607
      annie65607 murnaloo

      Posted

      Hi Murnaloo,

      I agree I think everyone's pain threshold and healing can differ. So I had my UAE yesterday it went smoothly but my fibroids were large and took a lot of filler. Pain was moderate and I only used the morphine pump a couple of times. It made me feel a bit sick really so did not use it much overnight. Today I'm feeling tired, have a lot of heavy pressure, cramping like pains but have come home much to the amazement of the nurse team. But I can feel improvement in the cramping and am just managing with paracetamol. I will have to wait and see if this treatment works for me to see if during next 3/6 months any shrinkage unblocks the bladder pressure ...fingers crossed it does. Will keep you updated on recovery it's only day 1 so still taking it easy and resting lots. No appetite at all though hopefully it wil

      Come back X

    • ali46487
      ali46487 murnaloo

      Posted

      I am glad it went so well for you. I found this forum trying ing to find if what I was feeling was normal and although as you say it is mostly negative experiences it did reassure me that nothing was seriously wrong, just normal side effect a lot of women have. My Intention is not to put anyone off, as I said this is my experience and everyone is different. I am still doubtful I will go back and go through it again in the hope of 70% shrinkage, I want it gone and my bladder to have 100% of the space it needs and the worry of infection etc gone. As previously said my area did not give me any option this was hobsons choice for me as it was my only option. I deliberately did not seek out forums before hand as I just wanted to go and give it a try. I am 6 days in, have cramps again this morning and am dripping in sweat from hot sweats, I am pleased that not everyone has this.
    • ali46487
      ali46487 annie65607

      Posted

      So glad it went well for you Annie and I hope you are feeling better again today.
    • annie65607
      annie65607 ali46487

      Posted

      Thanks Ali, Am

      having a few sweats but apparantly that's normal like flu symptoms X

    • heather34376
      heather34376 ali46487

      Posted

      Sorry to read this no wonder you feel let down - so they didn't complete the embolisation? 
    • heather34376
      heather34376 farida2

      Posted

      I'm exactly the same Farida, my fibroid is in the lower posterior wall, I'm overweight a good 4/5 stones & Esmya or Zoladex haven't shrunk it. Now that I have had an MRI seems the only place that isn't fat & juicy are the arteries that feed my fibroid! (My radiologist said he'd had thought the size of it 12x13x7 that it would have had bigger feeds - so gave me a 50/50 chance of success) What petrfies me is the chance of infection as he said that once it dies overnight after the embolisation that its like a huge ulcer. I'm still not 100% what then happens, he mentioned chicken soup & heavy period like passing, does it all come away, I've read on hear some ladies have mentioned they have had fibroids calcify, I'm assuming that means that they go haed & stay there? I'm totally confused, so I completely understand what you are going through. I can have emolisation in July but I'm supposed to be on holiday currently on my 3rd 3 month course of Esmya, after having 6 months worth a year ago, then a wee break & 6 months worth of Zoladex. I'm at the upper limit for a keyhole hysterectomy attempt so it may end up open, if I go down that route. Anyway whatever I finally decide, I have to loose weight & quickly, sore back, sore hip, hot sweats. Oh life as a lady!
    • heather34376
      heather34376 ali46487

      Posted

      Ali, why didnt they let you choose hsytorectomy, can I ask your age? I have been offered one or embolisation, I've just turned 46.
    • ali46487
      ali46487 heather34376

      Posted

      No, it's only half done. He wants to see me in 4 weeks to assess what he was able to do but thinks I will need to be re scheduled to complete it. This is an operation the had already been cancelled twice before, the second time because the machine was broken!
    • ali46487
      ali46487 heather34376

      Posted

      Apparently because I'd just turned 50 and had been having a few flushes, he said the menopause would eventually sort it, when I asked how long he said could be anything up to 10 years varies from person to person. He said if I was 40 with a womb this size he would offer a hysterectomy but at my age it was either leave nature to sort it or embolisation. The radiologist that did the procedure wants to see me in 4 weeks to assess if anything is happening to the half he manged to do before the machine went down, but has advised they I'll probably need to have me in again.
    • heather34376
      heather34376 ali46487

      Posted

      Sorry to hear this, I still think options should be up to you. I know that usually when I've asked people who have had hystorectomies they are often around 48/49, so at 50 I cannot understand this reasoning. Only that nowadays its probably cheaper to embolise. I can't believe you have to go through that twice. They should offer you an op now if you want one esepecially with the embolisation not being done correctly. Thinking about you & wishing you all the very best c
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