UFE vs. Myomectomy for Large Fibroid
Posted , 11 users are following.
Hi,
I have a large fibroid that is now 11cm thanks to my wonky perimenopause hormones. I'm 46. I've had it for a while and wish when it was smaller I hadn't listened to my doctor's watch and wait advice and had tried to get it removed vaginally.
Anyway now it's really starting to cause me pain, not just during periods but also back pain in the middle of the night. I tried ulipristal last year and it did shrink it about 2cm but then it grew back. Also I already have very low progesterone so it gave me horrible side effects, anxiety and hair loss. I have no idea how close I am to menopause, my OBGYN says could even be a few more years and I'm worried about the fibroid continuing to grow. I am trying Chinese herbs as a last ditch effort.
But here's my QUESTION : Wondering if anyone with large fibroids has tried UFE vs. myomectomy and can weigh in on pros and cons, advice? I know UFE may not work as well for a larger fibroid and you could still have quite a mass, while surgery has its own risks and a longer recovery. I'm single so have no live-in support. I did find a surgeon who said she would do her best to save everything after visiting a ton of ahole doctors that essentially think women and their organs are disposable if they can't produce children. Wish we could reverse menopause or men went through it the same age, same way!
0 likes, 21 replies
molly72020 sakura26
Posted
if you have just 1 large fibroid they could remove it with key hole myomectomy not as big a recovery as open myomectomy. (if you have a surgeon who has those skills a lit dont) they can give you 3 months if zoladex injections to shrink it before surgery. i believe zoladex can shrink to reduce size significantly but is only temporary until surgically removed
tracey26434 sakura26
Edited
Hi.
I would just like to share with you my experience. I had multiple fibroids one of which was at least 10cm and 2 others very close in size. Last month I had a vaginal hysterectomy where ovaries and tubes were left in. I too suffered each month and would awake with back pain. I'm 49 and no idea how far away the menopause is but having the hysterectomy done by keyhole was the best decision I could have made. Maybe I'm lucky in the fact that I suffered with no pain at all except for what felt like bad period cramps for the first day and a bit of discomfort for a few weeks afterwards. I'm going back to work in a few days on light duties for a month as heavy lifting is usually included in my job. I was quite firm with all my GPS Consultants and my surgeon about the choice of hysterectomy as for me I couldn't see a future with any other option. Things really were that bad for me. For me this was the best decision ever and being able to get up in the morning with no back pain is totally blissful and an added bonus. I hop this was of some help.
1Jamie tracey26434
Posted
Hi Sakura
Can you tell a little more about the procedure you had. I am wondering how they managed a vaginal hysterectomy with that size fibroid. I have a fibroid somewhat larger -about 17 cm x 12 cm... the only option they have given me is an incision. One surgeon said it could be a horizontal incision, but the other said it would have to be vertical. Did they use a morcellator (sp?) or something to condense the fibroids before taking them out? What country are you in? Many thanks, Jamie
may49858 1Jamie
Edited
Hi Jamie,
Stop consulting with the vertical incision guy. Doctors who know their trade don't need more than that bikini but. Do they do verticals to bring out babies via cesarean? Are fibroids larger than babies? There's your answer.
Best, May
may49858
Posted
meant "bikini cut."
may49858 sakura26
Edited
Hi,
Sorry to hear your discomfort. UFE embolizes the fibroids, ie cuts off their blood supply. when I went in to see a uFE specialist right after pregnancy in 2006 because of bleeding, he thought I was an ex-patient becos some how my fibroids (2 large ones at the time) had embolized. They looked like a perfect embolization had been done. Well, I never had the procedure so l know a miracle of sorts happened. But, he told me the size could shrink some over time with them dead. That never happened. In 2018 they were still dead but unchanged in size and were cut out via a Myomectomy. So, 12years after they may have embolized they were still ~the same size. That's the only experience I can share. Hope it is helpful.
Guest may49858
Posted
May, I'd love to believe in miracles but there is a scientific reason your fibroids embolised 😁 During delivery, the uterus suffers an infarct and blood supply to it is cut. This is a natural process to avoid mothers hemorraghing to death. The uterus quickly recovers just like after an UFE but the existing fibroids may not, just like after UFE. So it's not unusual for a new mother to show embolised fibroids. Mother nature is just amazing.
cmak may49858
Posted
Hi May where were your fibroids located?
Are you healed from them now?
Thanks for sharing.
may49858 cmak
Posted
Hi Cakmak27104,
They were both intramural sitting at the "top" of my uterus like around the fundus. One measured 7cm and the other was 11cm. Yes, I had an abdominal myomectomy in May 2018. Best decision of my life. Short bikini like, and a total of 13 fibroid critters including these very two dead/self-embolized big ones.
may49858 Guest
Posted
This is amazing news and it is a miracle if that is what the body does naturally 😃. Thanks for the knowledge. I actually haemorrhaged during delivery and needed a transfusion. I never went into labor. The docs never considered that with those two intramural fibroids that big I'd have problems contracting. So they dosed me with pitocin for two days. Then when they got desperate they broke my placenta manually. When that failed and the baby was now at risk of an infection, they resorted to a cesarean. Fibroids + flaccid uterus = double whammy I was told (by another physician.....not by the delivery physicians). I bled out so much they thought I'd die. I still don't remember my delivery. The mysteries of medicine.
helen212121 may49858
Posted
hi there,
so happy you are doing so well. may i ask which city and which doctor you had your surgery with- they sound great!
sakura26 may49858
Posted
Hi, how bad was your recovery? I've read some stories on here that sound AWFUL. Like really long painful recovery. But some others not so bad. I'm on my own so wondering. I would ask for robotic but there's a possibility they'd have to switch to open surgery. Thx!
may49858 sakura26
Edited
Hi Sakura26,
By the day after surgery I was able to walk around parts of the hospital. About a mile by my watch. My doctor has this procedure where he attaches a pain pump to the incision site. The pain pump dispenses medication routinely so you dont have to take the narcotics. By Day 3 (I was discharged that day), I was able to walk for about 3 hours at a flower garden in the city where I had my surgery. This was the doc's recommendation. He has instructions for the nurses that you must start moving on your feet the day after surgery. I thought it was impossible but with their help I did it. So, the pain was not bad.
By 9 days after surgery, I was able to endure a 5 hour flight back to my home base from where I had the surgery. No problems there. By the end of the second week of surgery, my incision had healed completely. I spent a total of 8 weeks at home because I could. By the 4th week he told me I could do light duty and work from home if my job allowed it. By the 6th week he said I could start my long commute with the trains (no running or excessive exertion). My recovery was really uneventful. I had no worries. My period is back to normal. I had a season of no periods for about 2 cycles immediately after. Then a very heavy one by the third cycle. THen the flow for my periods became lighter than the very heavy one. Now I have normal periods that last 2-3 days (the main days). I usually have a five day period but with my fibroids it would be hemorrhaging until I turned white before my body would know to stop. Have not been anemic for about five months now.
That said, I do want to point out that I went to a renowned fibroid surgeon in the US for my surgery. This may have played a role in my recovery because it is a consistent story line for his patients. I wish you the very best.
sakura26 may49858
Edited
Hi!
Thx for the detailed info. Did you have open or robotic surgery? And could you tell me who your surgeon was and where? I want to keep all my organs even if I can't have kids. My current surgeon thinks she could save everything but again mentioned she might have to switch to open surgery to do that. Also would you say after 2 weeks you would have been able to work from home and drive to get groceries etc.?
Thanks!
may49858 sakura26
Posted
Hi, I had abdominal myomectomy so it was open surgery. REgarding working after two weeks, I would have had problems sitting for 8 hours at a desk. Sometimes after a long time of sitting you feel pressure and mild pain around the incision site. I strictly adhered to the doctor's instructions because I had no intentions of being sick again. The doctor had strict instructions not to lift anything heavy that would place pressure on the incision. I interpreted that to include grocery bags, my vacuum cleaner, a gallon of oil, etc. I was not doing any lifting at all until I got into the 4-6 week area. You have to walk around to prevent clots and to get the circulation going in the incision area. my doc said I could start working after 4 weeks if my job allowed me to work from home and sit in front of a computer. Not earlier. I chose not to because it was summer and I could stay away from work longer. You will need that time too because your body will feel tired even if you are not in pain. It is a significant trauma to the body. I did go to a party by the 2.5 week mark - no dancing. 😃
betty64519 sakura26
Posted
Hi Sakura26, did you had the myomectomy? I need to choose between myomectomy and hysterectomy and still not sure which could be better... I am not planning to have kids (I am 44) but still wants all my organs on place...
sakura26 betty64519
Posted
Yes. I had a laproscopic myomectomy where they used a morcillator. Only some University hospitals do it that way. There's a bit of controversy on the morcillator grinding up the fibroid if it's not benign. Mine was benign and surgery went well. I'm much better without the fibroid. I have 3 small scars. I didn't have to stay overnight. I lost a ton of weight and am back to my normal size. I had the fibroid removed as well as a dermoid cyst and I had an infected fallopian tube from a ruptured cyst. But kept both ovaries and uterus and one tube. So still having periods. I think hysterectomy should always be a last resort. Why remove healthy organs? Or go into menopause early? Also your organs still secrete hormones even when you're in menopause. They also hold things up. Look up prolapse. Good luck with whatever you decide!