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Ufe procedure am petrified!

Posted , 8 users are following.

emma29578
emma29578

Hi am 33 with one child already but not completely a 100% sure I don't want anymore even though my son is soon to be 16 in a few months.

Anyway after struggling years with heavy prolonged periods causing me to have low iron and Hb levels, and also painful sex. With persistence i managed to get a referral to a gynea doctor where it was discover a have mainly multple intramural fibroids, largest being over 10cm. After trying the mariena coil which I felt made my periods even more heavy plus contant bleeding troughout the month. Nightmare I was already spending 25 quid a month on tampons and mega thick night towels during my ten day bleed. Actually that is one of my questions how much do you spend a month on menstrual gear? Seem to have hiked up the prices. I feel like a bag lady with boxs of super tampons and maga thick pads i carry round with me.

Anyway well my gynea doc has kindly referred me to a radiologist to see about the Ufe procedure, I've had my mri, and my womb looks like a small beach ball as apose to nice cute little orange.

Oh yeah also had an hysteroscopy to get biopsies but also try and scrape any visible small ones away but there was none visable, and my follopian tubes looked great no obtruction protruding in.

So therefore my fibriods are intermural anterior protruding hence why I look about 4 months and can feel them very clearly... when I lie on my back i feel like ive got two bricks sitting on my lower abdomen sometimes it feels like it pulsating haha it's the strangest feeling. Does anyone else feel this?

So yep any way I am officially on the list waiting for an UFE procedure and absolutely bricking it. I think I may of done too much research and obviously all the bad contra indications risks and stories stick in your head. So am just wondering if anyone can give any me reassurance and what to expect. I do think in the long run this will be the best thing for me but very scared.

My radiologist likes goes in both femoral arteries her one side and the registra doc the other.

Anyway enough waffling some questions

How am I going to cope with pain ? (I thought labour wasnt at all too bad with minimal pain relief so hoping I've got a high pain threshold)

Can you describe type of pain?

Did you notice you belly go down? (realistically will I ever be able to wear a bodycon dress or bikini again?)

How bad/offensive Is the discharge shedding of fibriods odour? (Will I ever be able to have sex again? )

Overall has it changed you life for the better ?

The anxiety i get when on a period is contant as I work on my feet 14 hour days as and emergency nurse. Due to my job role am not always able to run the toilet right there an then when I know I need to. It's exhausting and embarrassing.

How much time will I need off work do you think?

Am just hoping this works for me.

Any stories of experience of the UFE procedure and aftercare advice would be greatful.

Thanks emma

0 likes, 16 replies

16 Replies

  • angel368
    angel368 emma29578

    Posted

    Hello Emma,

    I will try and answer your questions.

    The actual procedure is pretty painless, and they try to prepare you for the pain afterwards well. The pain started for me 30-45minutes after the procedure and was pretty intense. Nurses ensured I was dosed up well and gave me a dose from my pca whenever they checked on me as I was out of it most of the time. The pain was most intense for first 12-15 hours and I didn't need the pca the next morning but was given oral pain killers regularly.

    I went home the next afternoon was very delicate but felt ok, spent the next few days in and out of sleep and taking pain killers. Pain just felt like very bad cramps at this time but I was also exhausted and achy. I stopped taking pain killers after first week but still very tired.

    The good news is I felt the difference very quickly. I didn't get up in the middle of the night to go to the toilet any more, my stomach was smaller, my first period was so light, I wasn't sure it was my period and i knew my fibroids had shrunk as I couldn't feel them protruding anymore. I bought a bodycon dress 3 months after my procedure and received so many compliments.

    Since you have a job that keeps you on your feet, you will probably need at least 3-4 weeks off as the exhaustion lingers for a long time, and I became very tired from light exercise.

    6 months after my procedure I went to a concert and was able to dance and drink all night and felt great the next day. Before my procedure standing for longer than 10minutes was painful and I slept all the time. You should be able to get back to all your usual activities within a few months.

    Good luck with the procedure and hope it all goes well.

    • emma29578
      emma29578 angel368

      Posted

      Thanks angel

      ; wow sounds like you've done really well after your UFE I really hope mine goes as well.

      Yes I think I will take a month off if possible the radiologist consultant gives out a notes for 2 weeks hopefully my gp will give me another although I will not hold my breaththey not been very sympathetic. I had to beg for a blood test as I was so exhausted from my bleeding he was like "you would really have too loose a lot of blood for it to effect my hb"

      It was only the next month when I seen another gp that I was sent for bloods as I struggled to get up from the bed as was so dizzy that it come back my hb was like 95, so on the iron tablets they put me.

      Have you been for your follow up appointment yet ? How did you get on ? Did you have any bruising around the entry site ?

      Thanks for taking the time to get back to me

    • angel368
      angel368 emma29578

      Posted

      I had my procedure in September 2015 and went for my follow up appointment in November. The gynecologist was happy as my bleeding was significantly better. I did have a fair amount of bruising on my groin and thigh and that area was also tender for 3-4 weeks. I had an ultrasound a year after the procedure and all fibroids have shrunk more than 50%.
    • heather34376
      heather34376 angel368

      Posted

      Hi Angel glad to hear your ufe went well where were you fibroids, what size were they ?
    • AyKy
      AyKy angel368

      Posted

      Thanks for such a reassuring post! 
  • heather34376
    heather34376 emma29578

    Posted

    i'm on a similar journey with a 16 x 16 cm seemingly with small arteries! but trying ufe gotta be better than an open hystercomy. Mine is intramural lower posterior wall tried drugs Zoladex & Esmya didnt work, I too am bag lady its hellish. I'm aneamic, have low feriti, B12 the lot. Tired all of the time & fed up!

    • emma29578
      emma29578 heather34376

      Posted

      Hi heather,

      Sorry your having such a horrid time I understand and sympathise. It does feel like fibriods sucks every bit of life out of you dosent it. I used to be so active go the gym 5 days a week unfortunately now I've just piled the pounds and the heaviest I've ever been. My jobs very active and I literally don't sit down all shift and feel like an old women after (aching bones) But on my days off a literally have no energy to do anything I would just stay on the coach all day if a could. Was a struggling doing everyday shores housework ect. It didn't click it was the fibroids draining me at first a just thought I was getting lazy or might be i was depressed.

      It was only when then I found out it was causing me to be anemic and my iron was like 4 should be above 14 normally thst it clicked. still struggling to get my iron up although my HB Is improving.

      I do find the iron tablets help with energy levels I can really tell the difference if I don't take them for a few days.

      I did struggle to tolerate them as well at first omg the stomach pain and bowel problems it caused. Really was a battle with either feeling tired or doubled in pain. But I one of the pharmacist I work suggested taking it with vit c dispersible tabs which do help enormously.

      So did they tell you from your MRI Scan that your arteries are thin?

      Do you mind me asking how old are you?

      I can defiantly agree why hysterectomy would be the last option. It seems a lot of gyne docs just automatically jump to this as a solution without discussing other options. Not only is it a huge op physically to get over, but they also forget the psychological impact it has on you as a women also.

      Let's hope UFE works for us hey

  • heather34376
    heather34376 emma29578

    Posted

    Sorry site crashed before I was finished. I'm usure if I will benefit much but feel lke giving it  try is better than the other option, en f I ed up having to have a hysterectomy, it could maybe be by keyhole if it had reduced enough, or at least I'd feel like d iven the least invasive routes a go. Keep me u t date how it goes for you. Good luck xx

  • pam14575
    pam14575 emma29578

    Posted

    Ok here's my story and sorry to be the negative one. Surgery was pretty quick mine wasn't done in a hospital . The pain kicked in as soon as I woke up and let me just say I have had 5 kids NATURALLY no pain meds and this was the worst pan I have ever had. Now I have to say after a day of pain taking the meds the doc ordered, I called and they said to stop taking the pain meds😳And switch to tyneol and Motrin and let me tell you it worked !! They said sometimes the pain meds can causing more cramping but

    I hope this isn't the case for you but keep some on hand at home just in case.

    I had my surgery sep 2016 and was back to work within two weeks . My third week I went for my check up and felt ok but not like myself and was told I was still healing.

    In dec I asked to have my hormones checked and was told I was in full menoipause . I only had one cycle in October. I wasn't planning on having anymore children anyway but still. Well all in all I have to say I would probably do it again to keep all my lady parts and stop all the heavy bledding I was having . I have found a great natural remedy that has helped with my hot flashes etc.

    • emma29578
      emma29578 pam14575

      Posted

      Hi, pam thanks for sharing your journey, one of my big concerns is going into to early menopause as am only 33. But I guess that's one of the risks of the procedure.

      As am from the UK I have not heard of tyneol and Motrin what is in them ?

      I will be getting it done while awake although I do hope they will give me some sadation. Apparently I get a dose of iv paracetamol and PR diclofenec just before the procedure. As well as IV antibiotics as Then will have pca pump.

    • pam14575
      pam14575 emma29578

      Posted

      Tylenol and Motrin is just an over the counter pain reliever like aspirin .
    • heather34376
      heather34376 emma29578

      Posted

      Hi Emma, I think they can also give IV antibiotics before & after the procedure to doublee protecion against infection. I'd ask for all of the antibiotics I could have as thats my biggest fear infection/sepsis.

      Keep me up t date with any info. I've aso read that some ladies take pain relief a few days before check that out, also very high fibre diet before & stol softenors like morvicol before x

    • emma29578
      emma29578 heather34376

      Posted

      Yes my radiologist doc says I will also get iv antibiotics during procedure heather. Will make sure to take some movicol a few days before. I have yet to be given a date yet I am just on the list. Hopefully I don't wait too long. I feel my fibriods are growing by the day. My stomach is huge today feel so embarrassed as its getting hard to hide.

      I will keep you updated x

  • AyKy
    AyKy emma29578

    Posted

    Hi Emma. I'm glad you posted this. I am scheduled to have my UFE procedure next week (16th) and I am beyond myself with anxiety. 

    • emma29578
      emma29578 AyKy

      Posted

      Am sure you will just fine, its just a bit scary when you hear about all the complications but I just think it a risk I will have to take as these fibriods are making life miserable. I spoke to my doctors sectutary I should get mine by end of April beginning of may. Would of liked it sooner as am going away July hoped a I might be able wear a bikini.

      Keep me posted on how it all goes and your progress please xx

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