Fibroids Dying
Posted , 9 users are following.
Having a very large posterior wall intermural fibroid, I was scheduled for a UFE late November after 6 months od Esmya, 6 months of Zoladex. I sought a second opinion & he now tells me that looking at the same MRI as the consultant who said I could have UFE that he thinks 90% of my fibroid has died. Seemingly fibroids can grown so big that they basically strave their own blood supply. I am left confused & worried as any one had this or something similar happen?
1 like, 18 replies
christine65130 heather34376
Posted
Hi, when I was having extreme pain which never seemed to be in the same place in my abdomen, my gynae suggested that it was to do with one of the fibroids degenerating, it stopped hurting either of its own accord Or due to me taking Esmya. My gynae wasn't particularly interested or concerned. Maybe you could postpone treatment And have a scan in a couple of months to see if It has disappeared or grown back again?
heather34376 christine65130
Posted
Hi Christine, well I had my MRI last Monday just waiting for results, but now I've had visable blood clots that look like they are in my urine. So I'm off for a cysto something or other tomorrow! One of my Dr's said it may have been a uterine clot, I'm hoping so, as I don't want anything else to contend with!
christine65130 heather34376
Posted
Hope it's nothing to do with the bladder, as you say you can do without any more complications x
heather34376 christine65130
Posted
Yes so do I. I seen my GP last night & my urine now has no visable or invisable blood in it. So we'll see tomorrow. Hopefully they'll rule out anything nasty fingers crossed. As I've been having trouble with my bladder for ages but always put it down to the fibroid. Though I've not noticed clots until around Christmas & a period like a Crime scene did follow, so I just kept thinking it was vaginal blood, but then when I had my MRI last Monday I could clearly see a clot in the urine. Period started teh Friday in between Christmas & New Year, 30th December so should have been finished by about 6/7th. So it is close & may have been a logded uterine clot. I hope so. x
ChiSKM heather34376
Posted
I've looked at the Esmya option and is looking into laparoscopy as well. I went to ER due to acute pain and was eventually diagnosed as having degenerative fibroids. My fibroids contribute to my protruding belly. It would be interesting to know what your follow up results indicate. Hope you get greater relief soon.
heather34376 ChiSKM
Posted
Best Regards
Heather
rosieposey heather34376
Posted
Hi Heather!
I had a large fibroid last year which died (also called necrotizing or degenerating fibroid). It was the biggest of my fibroids, about 10cm, and was also my most problematic, as it was prolapsing my womb. At the time it was a bit scary, as my specialists didn't seem to understand what was happening. Funnily enough, I suspected right away what it was. I told my gynae, "I'm pretty sure my fibroid is necrotizing," and he dismissed me out of hand. Perhaps it isn't something they see all that often. However, later he changed his mind and confirmed that I was correct.
Anyway, I don't know if this will happen to you, but I'll give you a heads up about what I went through, in case the same symptoms manifest.
For me, the tissue itself began to expel. It started with a bad pain in my stomach, and then I had a mix of period and weird looking meaty bits. (I'm sorry if this is gross and TMI, but it might be helpful if it does manifest for you too). Over the course of about a month, there was an almost constant expulsion of tissue, averagely about a postage-stamp size, sometimes smaller, occassionally bigger. It varied in texture, colour and (sorry about this) smell. Honestly, sometimes the smell was dreadful - kind of like rotting vegetation. After all, it's basically tissue that has died. The longer it lies inside you, the more rotten it gets. I also had cramps most of the time too. Towards the end, the tissue became paler and clearer and aroma-less.
Anyway, a second MRI showed that, by the end, the fibroid had shrunk from 10cm down to 1cm. Bascially, it meant I no longer needed surgery, at least, not immediately, so it was a bit of a blessing in disguise really.
Sorry for the long post, but I just wanted to share my experience if it will save you some worry. I also was checked for malignancy, and was cleared. Essentially, all that happens is that sometimes these fibroids have growth-spurts, and out-grow their blood supply. It isn't common, but it isn't unheard of either.
Hope this helps! You may not end up experiencing any of the nasty symptoms I did, but if they do manifest feel free to contact me again for some tips on how to deal with it.
Best of luck and good wishes, Rosie
heather34376 rosieposey
Posted
Hi Rosie,
Thank you for your response it is very much appreciated. Sorry this doesn't sto typing quy I'll try a pmx
jae15 heather34376
Posted
Hi Rosie - that is really interesting - i hope that happens to mine - I have one 9.7 and one 4.5 but have stopped having periods. I had a UFE 2 years ago so don't want to go through a hysterctomy....thanks for sharing all details! Heather - good luck - keep getting scans!
heather34376
Posted
Hi Rosie,
I had the MRI last Monday (it takes a while to get one but at least I've had it now!) A few years ago now I had a couple of periods with the meaty bits you speak of. But just blood & clots since. I know my fibroid is still massive you can feel it from the outside & any medic that touches my stomach always comments on it! I know its blood supply is reduced but I'm not sure if its always been like this, I've known of it foe over 10 years so its had a very long time to grown even with smaller arteries feeding it. However I'll let you know what they say to me once the results come back. xx
heather34376 jae15
Posted
heather34376 rosieposey
Posted
Rosie do I remember you saying that your degenerating fibroid was intramural? In the womb wall? As that's where mine is & I wondered if intramural ones just either calified or maybe even re-absorbed.
Karmaway rosieposey
Posted
Hi Rosie what treatment did you have for your fibroid to shrink? I think the same is happening to me as I have the same sort of symptoms 😮
rosieposey Karmaway
Posted
I didn't actually get treatment until after it degenerated. The degeneration probably happened due to a sudden growth-spurt of the fibroid, which caused it to out-grow its blood supply, in turn making it degenerate. (why the growth-spurt happened is anyone's guess, could be stress related).
Some people experience similar things with degeneration after UFE, if the fibroids affected are in, or prolapse, the birthing cavity.
As for treatment, I had 9 months of HRT (Zoladex) which showed almost no impact to my remaining fibroids.
best of luck hon,
xox Rosie
Karmaway rosieposey
Posted
Thanks Rosie I guess that's what's happening to me, growth, movement and degeneration!! Ugh bloody fibroids! Thank you for your reply! Good luck to you too ??
cerys02581 rosieposey
Posted
Hi, ive just come across this post and am experiencing similar circumstances to what u describe. I cant seem to get any sense from anyone and wondered if u had any advice. I was told following an ultrasound scan that the largest of my fibroids (15cms) has started to degenerate. On 30th dec i had excruciating pain in one side which passed quickly. A few days later I passed (sorry for tmi) a number of massive clots. This settled then a day or so later i began passing a bright red watery loss. This continued to the point that I felt very unwell and was admitted to hospital to treat an infection they say was caused by the fibroid degenerating. They have now put me on esmya to hopefully stop the bleeding. Ive been on it 3 days and have had another 'clot episode' today. I have no idea why these clots are happening ?? I would also like to know how u know if yr fibroid has died completely and what physical symptoms occur when ite degenerating? I'm really struggling with the lack of information im receiving and would very much appreciate any advice you can offer xx