Large fibroids - referred for UFE?? Not sure this is right for me! Any advice?
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Hi
I have known about my fibroids for the last 18 months although I knew something wasn't right before my scan for a while. Having suffered from Melonghhoria all my period life i was used to severely heavy periods but in the last 5 years they have been horrendous. Some days I don't want to leave the house for fear that I will have a random flood, I take clothes to work and sometimes have to make an excuse and leave clients quickly which is so embarrassing. I have become quite anaemic in the last 6 months with it and my hair has thinned massively!
I'm not that confident in my gynaecologist, he talked me through options 12 months ago as if i knew what they all were and was very blasé! Since then he tried to fit a coil which he couldn't as my uterus is now so tilted he couldn't manage it and I don't think it would help much at all.
My fibroids are large with 1 being 9.5 x 10 x 7 another 8.7 x 9 x 7 another inbetween those two at 5 x 6 and then various smaller ones knocking around. That was December so who knows now as they have grown quickly! I am 5ft 3 and a size 8-10 which doesn't leave much room to hide the two weeks around ovulation that my stomach protrudes to look 4/5 months pregnant which leaves me so depressed and stuck for clothes. Besides the vanity aspect, the constant hard lump and severe pressure and heavy feeling is unbearable. I have been referred for UFE in January which I've now heard nothing about due to the pandemic. I was avoiding a hysterectomy because of my age although I do have two children and don't plan on more it seems very final. I'm now thinking UFE isn't right for my fibroids and will be a waste on many more months and not get the results I am desperate for. I don't know anyone with the same condition so am looking for advice. I have reached a point where it gets me so down feeling like I'm carrying the weight of a pregnancy every single day and I just want it done. I would consider a myoectomy now even thoigh I know they can grow back. i am a real exercise freak so don't like the idea but Having previously had two c-sections I like to hope I'd manage. Any advice, greatly appreciated. I realise this probably seems unimportant next to Covid-19!
0 likes, 5 replies
claire73738 kate75590
Edited
Hello!
I have to say that UFE wasn't offered to me as an option, but I feel exactly as you do - going about every day with that heavy weight, scared of flooding all the time, changing clothes at work, anaemia ... it's so debilitating. So after two years of trying contraceptives, coil, etc. I opted for the hysterectomy, which has been postponed due to Covid. I had been supposed to get ablation/sterilisation back in November, but on the day it turned out that it wasn't really suitable because of where mine were and the size. I am currently 12-14 week uterus size, and it's grown since then. I've been given Decapeptyl in the meantime to try and shrink them in preparation for surgery, but the down side of that is the amount of weight I've put on with it. Like you, I am 5'3" and have put on 3 stones in as many months, which is a massive amount for someone who is usually size 10. Had to buy a whole new wardrobe. From my reading about Decapeptyl, it seems that it's often used to manage fibroids, among other things. Maybe ask your GP about it. Everyone is different, of course, and the weight gain might not be a side effect for you. As for hysterectomy, while I hesitate to recommend it (as I've not actually gone through it yet), my feeling was that since my family is complete, my fibroids are affecting my quality of life, and I don't want to spend more months trying something else, that while the hysterectomy is very final, it's probably the best thing for me. I do know several other women who have had it done (for different reasons, one I know was because of fibroids) and they are happy with their choice. Good luck!
kate75590 claire73738
Edited
Hi, sorry you are experiencing the same as myself. I too have lost the feeling of my bladder being full until i am then all of a sudden desperate for the toilet. Then on other days i feel like i go for a wee 20 times and can't go more than 30 minutes!
I feel exactly the same, they are hugely affecting my quality of life now and my self confidence is vanishing! I have separate trousers for half the month as my stomach forms a very high hard lump with a few inches waist gain from just before ovulation until i get my period and this has got progressively worse over the last 6 months. i completely understand where you're coming from not wanting to wait any longer with what already feels like a slow process. I am so tempted to call my Gynaecologist and say just refer me for the hysterectomy but the idea of the menopause worries me also. I worry that nothing will ever go back to the same again and I'm stuck like this. I haven't heard of that medication but maybe it will be mentioned if it id something I am referred for.
Good luck to you too I hope it all works out for you xx
Steffy3043 kate75590
Edited
Hi, Im sorry you feel so down. I had the Ufe procedure done in December after finding out I had fibroids 12 months earlier. I collapsed in work from the bladder pain/ pressure they caused me & was taken to hospital & sent away with water infection tablets even though I tested negative for infection. I found out a few weeks later after paying private that I had 5 fibroids of different sizes & I too am only a size 8 so like you felt like nothing fitted any more & I looked like I was pregnant, I had horrific flooding bleeding & clotting which led to being very anemic so I have been taking iron tablets for years because no one diagnosed I had fibroids until I paid private for futher investigations. The weight & pressure from the fibroids caused my uterus to tip & press on everything & caused me so much discomfort I no longer felt like I could be myself. The doctors tried offering my a hysterectomy because I didnt want anymore children (Im 43) but I pushed for Ufe as I wanted to try the less invasive option first with the fastest recovery. Its coming up 5 months since I had Ufe & so far I feel like I have my life back. My tummy is now half the size it was, I was back exercising after a month & feel fit again. The bladder pressure lifted so quickly it was amazing. Its only what I experienced & everyone has different feelings about Ufe but for me so far its been the best thing I could have done. Try to stay strong & I wish you all the best with you decisions.
kate75590 Steffy3043
Posted
thank you for your reply. That's fantastic news that it has worked do well for you! I imagine it is so amazing to feel somewhat back to normal and be able to see yourself returning. Can I ask what size your fibroids were? Just wondering if they are a similar size to mine of maybe smaller if it has worked so well. If it wasn't for the pandemic right now I would happily pay to go private and just get it sorted as it seems so much more valuable to me now to try and get my life back. It also seems a subject that people don't talk about and no one quite understands that the feeling bloated isn't just in your mind it's a physical pain as well.
Thanks for sharing your positive story x
Steffy3043 kate75590
Edited
Thanks you. The the only reason I decided to go private was because I had suffered for years with anemia , bladder pain ,heavy periods & lots of other symptoms & then my tummy started to grow over about two years & I just knew something wasn't right but each time I went to the doctors they would just test me for uti & other things & then say its good news the tests came back negative so your fine & why dont you just take the pill ! I just felt like I was getting nowhere. I was never offered a scan to see what was going on, I don't think it crossed their minds to even do one strangely. Ive changed my doctors since & am now with a different surgery. I only had the investigation & a follow up after the fist scan private & then he referred back to the Nhs for the scans & treatment, it made all the difference because he was amazing & knew something wasn't right straight away. My fibroids were not as big as yours I had one 5cm , one 3cm & 3 of 2cm , but if you add those together it still becomes a problem & it felt & looked like I was 5 months pregnant. I just wanted treatment as fast as possible so I could get my life back. I had my first appointment private in Feb 2019 & I then had the Ufe in the Dec. I know things are all over the place with the pandemic but I really hope you manage to get an appointment soon, good luck.