Upcoming UFE procedure - reassurance/advice would be appreciated!

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Hi everyone! I have been suffering from fibroids for years. I had my first myomectomy to remove 12 uterine fibroids in 2008. It was a great success. However, several fibroids regrew by 2011. I went to have a hysterectomy (I was 35 at the time - no kids). The surgery was unsuccessful because I had formed a lot of scar tissue and they were unable to reach the uterus (full lower abdominal incision for both surgeries). Recovery was horrible for both, though I was much stronger and healthier at the time of my second surgery so my physical recovery was quick - my mental recovery (the anguish knowing I still had fibroids) never really went away. 

There are really no words to describe my pain now. I am a personal trainer/self-defense instructor. However, over the past 6 months I have had to severely reduce my activities because it hurts to even stand for long periods of time - let alone move. As a consequence I've been feeling very depressed. I still try to workout regularly - even if it's a slow walk or light weight lifting, but seeing my health and fitness decline - and my abdomen grow larger - has been tough to take. Honestly, I wanted a hysterectomy, but the scar tissue situation makes it a risky procedure, hence the scheduled UFE.

I have several fibroids, the largest measuring 18x13 cm sad among other large ones. I'm so uncomfortable all the time.

I'm definitely scared of the post-procedure pain, but more than that, I'm apprehensive about how successful the procedure will be. I'm new to the UK and have been dealing with the NHS for the first time. I feel like I've been waiting forever for this procedure. I don't like the idea of going to the hospital for a procedure without knowing anything about the doctors or staff - and they know nothing about me. Will I just be another body on the operating table? I'm trying to stay positive, but it's been tough. 

Any words of reassurance, advice on what to expect post-op, and just general feedback about the procedure/post-op recovery would be much appreciated. 

Thank you! 

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  • Posted

    Hi Ayky,

    I'm sorry to hear about your troubles with fibroids. I had some particularly troublesome fibroids (a 10cm fibroid and several smaller ones) which left me in pain and discomfort for most of the month. I had my UFE exactly a month ago.

    If you have concerns about the doctor who is going to perform your procedure and/or about the hospital, I think you could try and find out reviews online. Some NHS trusts have online boards of reviews -- look up both the X-ray department and the gynaecology department. Also use your pre-op appointment as an opportunity to ask questions about the experience of the team. Several websites give advice on what questions to ask at your appointment (for example, how many procedures has the doctor performed, what is their success rate, etc). Don't be embarrassed to ask these questions as there are risks (e.g. misembolisation where some of the particles used to embolise the fibroids end up in other parts of the body).

    The post-procedure pain was not too bad. I was given Fentanyl which, I discovered, I'm sensitive to as it made me light-headed and dizzy. I was ok when that was changed to oxycodone.

    As I've written in another thread on this forum, I did develop infection 6 days after the procedure. This caused me a lot of pain and discomfort but was eventually controlled with antibiotics. I had been warned at the pre-op that fibroids over 10cm pose a greater risk of infection. As your fibroid is bigger than that, you need to be vigilant for signs of infection. For me these signs were high temperature that did not come down with paracetamol and overall malaise. Other symptoms include discharge and sweating. If you feel something is not quite right, don't hesitate! Call an ambulance and ask to be taken to Accident &Emergency. Make sure you're seen by a doctor from the gynaecology department (although that will be easier if you go to A&E during the day, not at night).

    Despite my infection I'm now slowly recovering. I can't say yet how the UFE has affected my fibroids as the process of them shrinking is a long one. I do know that my tummy feels flatter and softer than before but I'll have to wait a couple more months at least before I can offer an appraisal of ufe for me.

    I hope this is somewhat helpful. Don't hesitate to ask any further questions.

     

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    • Posted

      Hi Jess, 

      Thank you so much for sharing your experience. It was definitely very helpful. Part of my anxiety, I guess, is also feeling like I'm going through this alone. It helps to know that others have gone through it and are on the road to recovery. 

      How was your eating/appetite post-surgery? Also, were there any things in particular you felt like you needed once at home - i.e. dressings to take care of the wound etc.? 

      Thanks again!

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    • Posted

      I had a very poor appetite following my procedure and have lost a lot of weight. My appetite is returning now but I can still not tolerate strong-smelling foods. I was given dressings for my wound at the hospital but only used one or two. After a week or so the wound can stay undressed. You need to have a few boxes of paracetamol/ibuprofen at home and take them regularly as these help not only with the pain but also with controlling inflammation. Don't try to do much in the first couple of weeks following the procedure -- it helps if you have someone to help with meals, etc.

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  • Posted

    I had several fibroids with the largest being the size of a 20-week fetus. It was positioned on my uterus and I wasn't a good candidate for myomectomy or laparoscopy so my Gyn wanted to do a total hysterectomy and I wasn't comfortable with the idea of anesthesia and surgery. My biggest complaint was the size and I saw immediate results within days of UFE and my doctor said they will shrink even more. Instead of going through my groin the radiologist went through my wrist because it gave less stress on the body and allowed for quicker healing.

    I had my ufe in October. I returned to work after 3-weeks because I was able to take the time. I saw weight loss and reduced bloating immediately. I had a follow up visit a month later and my doctor said I will continue to see shrinkage. I experienced some pain during the first week but knowing it was temporary helped me get through it. I've had no subsequent pain and no period since. I would do it again instead of undergoing a major surgical procedure. Hope this helps.

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    • Posted

      Hi Coco, 

      Thank you for sharing your experience! Yes, it was very helpful indeed. I'm glad to hear you're recovering and you've had a positive experience. That makes me feel a lot better. Much appreciated!

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  • Posted

    Aww AyKy, don't be scared. I had the UFE procedure last week. Any hospital procedure is scary I know but look at it this way - not nearly as scary as the living hell of fibroids and the embarrassment of heavy painful uncontrollable periods.

    I have multiple fibroids the size of a 20 week pregnancy. I've had them for years but put off doing anything about it until it became unbearable and I ended up in hospital for a blood transfusion as a result of severe anaemia.

    You'll get to meet the interventional radiologist who will perform the procedure at your pre op consultation. You'll be able to discuss pain control and anything else you think of. Go armed with a list of questions if you like.

    I know everyone's different but the pain I experienced was like a really bad period pain but it was well controlled with morphine and other meds. I also had a pain killer as a suppository before the op to help. I had morphine throughout the procedure and a morphine pump after. I wasn't allowed back on the ward until my pain was controlled and they were checking me every 5 mins asking me what the pain level was. It really was excellent Care and this is all on the NHS in the UK. The pain eventually subsided after around 3 hours. I think on reflection this is because it takes me a while to respond to painkillers and my body always takes ages to respond to morphine in particular. In fact ibuprofen combined with codeine works faster for me than morphine. I went home the following afternoon.

    When you go for the pre op consultation tell the radiologist you're worried about the pain and ask what pain control they offer before, during and after the procedure.

    I'm 10 days post op and I feel OK. I had a few days of abdominal discomfort - not pain exactly. More a dull ache and a heavy feeling with the odd twimge. But that could be because I was about to start my period. Obviously I can't comment on the long term effects.

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    • Posted

      Thank you for sharing your experience MsManc - it was very reassuring! I'm glad you're feeling alright post-op. Best wishes for a quick full recovery! 

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  • Posted

    Hi ayky have you had your procedure yet ? if so how was it. I have been given a date 5th April so am incredible nervous but excited at the prospect of feel normal again although I know it's a gradual progress. X

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    • Posted

      Hi Emma. Yes, I've had my procedure. I'm exactly 2 weeks post-op now. 

      The procedure itself went well. The staff at the hospital were great. It wasn't painful at all and I was discharged the next day. 

      I'm about to post about my experience separately for others to read as well, so stay tuned. 

      Good luck with your procedure. I'm feeling better and stronger each day x 

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