Fibroids - Zoladex Success? UFE Feedback anyone?

[Project123]

I am so happy I have found this source of information!

I was diagnosed with 2 x grapefruit size fibroids in May 2020. Have had MRI and gynaecologist has suggested I have Zoladex injections for 12 months. Also been referred to radiologist for possible UFE procedure (I want to avoid hysterectomy if poss). That said due to covid backlog I have been told I will be lucky to get a telephone appt with radiologist in 2 -3 months. Also the current waiting list for my procedure is 18 months and growing rapidly.

I have given up work due to pain, blood loss and so on. I wonder how long I can go on like this - it seems I will be lucky to see a resolution within 2 years. My life is on hold.

Pondering taking a loan and having private procedure.

Any advice, feedback or tips would be most appreciated.

Thank you x

[Eleanor1989]

Hello

I thought that but I got my appointment within eight weeks to see gynaecologist and saw radiologist for mri .... which I had Monday

Have you had ultrasound x

I think that’s a rough guide line as I thought mine were quick x as soon was told there was a list waiting x

[Project123 in reply to Eleanor1989]

Thanks for your reply. It sounds similar to me in that I had gynaecologist, ultrasound, MRI and biopsy appointments all within 12 weeks. On my 4th Zoladex implant now and awaiting the chat with the radiologist. The 18 month wait (to date) for the procedure is so disheartening . I do hope all goes well for you

[Eleanor1989 in reply to Project123]

I havnt had biopsy though x

[Lyla2000]

Hi, I’ll try and cut a long story short. I’m 38 and have a large 15cm uterine fibroid, originally diagnosed at 11cm in 2016. I was originally put on ulipristal acetate for 6 months in 2016 and urged to either have a baby or have a hysterectomy. I did neither and just put up with it really. Zip forward to 2020 and things were getting much worse culminating in me being admitted to my local hospital in June due to a large haemorrhage. I stayed in over night and the consultant put me on zoladex (a godsend!) I was given an outpatient appointment with him but was again told I would need a hysterectomy. As I’m being treated for crohns disease at another lager hospital 40 miles away I decided to ask my GP to be referred there. I saw the gynaecologist there on Monday, after initially being told it would be next year due to covid. She had a completely different attitude to the male consultants and wants to avoid a hysterectomy, especially because I’ve never had children. She said I can stay on the zoladex for at least another 6 months but has prescribed me tibolone hrt. She’s arranged an MRI scan and a telephone appointment with the radiologist to discuss UFE procedure, I was initially put off UFE by the original consultant in 2016 as he said, because the fibroid is so big, it would be terribly painful and he didn’t recommend it. The female consultant also suggested a mirena coil or even going back on the pill which I haven’t taken for years. I’m still mulling it all over. There’s nothing much I can really do until I have the MRI and like you say, with the covid situation it could be weeks. I had an MRI last year so at least the latest one will show if the zoladex has been successful in shrinking the fibroid.

[Project123 in reply to Lyla2000]

It sounds like you have had an awful time of it! We can only hope the Zoladex works its magic whilst we wait.... I too stopped taking the pill (probs 10 years ago - I'm 43) but am interested in what your consultant suggested. I have been prescribed HRT to sit alongside the Zoladex but when I read the information sheet it stated it can cause fibroids?!? So I haven't ben taking it. Sigh.

I wish you luck with the fibroids and crohns xx

[Carla2004]

Hi I found out I had fibroids during a miscarriage they were small at the time this was 4 years ago I was told to leave them and keep trying for a baby lucky after alot of problems I did fall pregnant however at 20wks I had a very large bleed and almost lost our baby and my own life. The bleeding was controlled and I managed to have a healthy baby girl in 2019 however the fibroids grew very large. I have 4 major large ones. I've been waiting since January to have a myometomy but I've only just had mri. I've been on zolodex since beginning of the year hoping to shrink them before surgery although I've recently been told the zolodex didn't work they are still large grown bigger since I've been on zolodex I'm not sure when I will have surgery but the lockdown is making it impossible to get it done any time soon. I've now been told that I could have embolization before the myometomy. My consultant made it sound it would be done soon but the waiting list consultant said it could be a while as they have a big back leg of patience. I understand that but for the last 4 years I've felt my life is on hold due to the fibroids I'm now getting very bad headaches from them as well as heavy bleeding pain bloated stomach and at the moment I'm not seeing any end to all this. I d like to have another baby but I cant with the fibroids and I'm being told surgery could end in hysterectomy.

[Project123 in reply to Carla2004]

thanks for the post Carla. So happy to hear you had a beautiful baby girl but how very frightening for you. I agree, its awful that you should be left in limbo, especially as you wish to expand your family. My consultant has suggested I have 12 Zoladex injections, I'm wondering what will happen after that as that would still leave 10 months of waiting list ahead of me at best. Are you taking HRT with the implant? Have you tried tranexamic acid for the bleeds? I found it did make a difference, lightened the 'flooding'. Also discovered was anaemic due to the blood loss so taking iron supplements too.

You must be exhausted, especially with a little one.

Hope you get some news re your procedure soon x

[Carla2004 in reply to Project123]

Thanks for the reply I have tried tranexamic acid I called it my lucky tablets as I was put on them while I had my heavy bleed during pregnancy it was my miracle medication. I have very low iron so I ve recently had 2 iron infusions. I was put on the zolodex back in January and I was placed on tibolone hrt tablets they helped alittle with the hot flushes I have with the injections I've recently been told to stop the hrt as u have to stop them 3 wks before having surgery. Being told to stop them gave me hope of having the surgery sooner rather than later but I was told to keep going with the zolodex injections to keep blood lost minimal for when I do have surgery. When the surgery happens god only knows. I cant blame the doctors or hospitals they have their own problems coping with this virus. But having these fibroids are so draining i just want the surgery to get it over with and hopefully put it all to rest but the longer all this virus goes on i just dont know when I can properly move on and start to enjoy my life with my baby girl and hopefully if the surgery goes well maybe fingers crossed I can have another baby to extend my little family. I hope everything goes well for you the waiting makes it harder to cope sometimes worse than the symptoms of having te fibroids. Good luck with everything I ll keep my fingers crossed for you as well as for me.