Please, I need advice desperately!! Have 4 Options for huge fibroids

I have a monster uterus and some really big monster fibroids. I am full from public bone to ribs and side to side. I did 3 months of lupron. No side effects. My last period was in June for 10 days. My hemoglobin started at 6.5 and 3 weeks later with iron 3 times a day it was up to 8.3 I am scheduled for a hyst Sept 1. It's getting hard to sit because of the pressure under my ribs. Good luck with whatever you decide.

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Originally Posted by Muadeb Hello, I'm fairly new to this site and I would like some advice regarding my situation. I would love to hear from those who have or had a similar health issue as me also. I'm 50 yrs old and I have an enlarged uterus packed with fibroids. Dr says its like a bag of marbles there are so many. A few of them are big.. 4.7 cm, 4.2 cm, and the largest at 8cm. Dr said my uterus is the size of a pregnancy of 20 weeks. I also have a grade 3 prolapsed uterus My stomach is puffy and it's embarrassing. I'm not really having alot of constant discomfort from the fibroids. Just here and there my low back will ache and sometimes badly. I'm getting bladder infections every month, which i was told there is probably alot of pressure on bladder and it's most likely not emptying all the way making me prone to getting the UTI's I'm noticing that my feet and ankles have been swelling pretty regularly, even when sitting. My periods are painful for the first few days. Bleeding isn't to bad but it does get heavy at times. I do spot for a week or so every month before period starts, so it seems I only have about a week where there is no spotting or bleeding. Dr said there are 4 options. Lupron to shrink uterus, uterine artery embolism, hysterectomy, or wait till menopause and see if they shrink down. I asked for his professional opinion with a case like mine and he said the other options other then removing the uterus will only shrink so much and may not provide permanent cure. He said he would not recommend ablation of uterine lining because I have to many fibroids. He said usually with the amount of fibroids and size of my uterus he usually removes uterus. I had a biopsy of uterus the other day. I get results in two weeks and that's when I'll want to make a decision on what to do. I've happen to come across a few sites regarding hystetectomy where they are warning women of how much we need the uterus and the many problems that arise from having it removed. After reading these I have so much fear, I just don't know what to do. It would be nice to not have UTI's every month as this greatly effects my life and limits me in what I can do because I have to go to the bathroom so often. Plus, taking these antibiotics so often isn't good either. Would be nice to not have periods either, as the pain with these is annoying along with the prolapsed uterus. I'm scared if I have the hystetectomy I may come out with more probs then I do now, as some on these other sites have mentioned. On top of all this, I found out I have a hernia located on my abdomen where my stomach is. So that would get fixed same time as the hysterectiomy if I had it. I'm also wanting to return to exercising and lite jogging. I can't so much now due to UTI's and pressure on bladder so it would be nice to enjoy exercising without feeling of having to go to bathroom the whole time Anyone else have a big uterus full of fibroids?? Please offer any advice and sharing your situation with me. Thank you so much!!

Hi, I can relate to parts of your story, I have a 6cm baseball size fibroid at the top of my uterus and thickening in my lining. I had a severe bladder infection about a month ago, I was in so much pain I could barely move without tears. My 1st culture showed E Coli and I started meds, but I continued to get sicker and a few days later a final
culture showed a different "drug resistant" (my Drs words, bacteria and he changed my med. All this led to him saying he felt I may have a large fibroid, he confirmed this on exam and then I was sent for an internal ultrasound which also confirmed the size, location and showed the thickening of lining. He said my uterus was the size of a 10 week pregnancy. I then had an Endo biopsy which thankfully came back benign. My Dr recommended hysterectomy and I'm scheduled for a DaVinci guided vaginal hysterectomy this coming Wed 8/24.
My symptoms (had these for months) included constant bladder pressure, serve lower back pain that seemed to never go away, sever anemia which seemed to cause its own symptoms (heart palpitations, fatigue), stomach bloating, heavy prolonged periods with many clots and bad abdominal cramps.
I have agreed to the hysterectomy because I will give anything to be rid of all those symptoms. I have chosen to keep my ovaries if they are healthy. Dr will determine this during surgery, on ultrasound they appear healthy.
Best of luck to you on your Endo biopsy results and in making the best decision for you on what to do!

I was embolized. My fibroid has shrunk over 90%. I have posted multiple times about my positive experience. I felt it important to at least try to keep my organs for the long term benefits they provide. This is a great alternative if you want to avoid major surgery.

I had multiple large fibroids that caused heavy bleeding and pain. I had a Uterine artery embolization a year before my hyster. 1. It didn't work. 2. It only shrunk them minimal not enough to make a difference 3. The uterine artery embolization was the most painful thing ever and I've had 4 surgeries and a couple of them were large incisions.

If I had to do it over again I'd do the hyster and skip the Uterine Artery Embolization. That's me though. I'm now struggling with a hormone imbalance (working on correcting it) but I don't miss those fibroids or my uterus at all. I do miss my ovaries though.

I hope that helps some??

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Originally Posted by Sreeve I had multiple large fibroids that caused heavy bleeding and pain. I had a Uterine artery embolization a year before my hyster. 1. It didn't work. 2. It only shrunk them minimal not enough to make a difference 3. The uterine artery embolization was the most painful thing ever and I've had 4 surgeries and a couple of them were large incisions. If I had to do it over again I'd do the hyster and skip the Uterine Artery Embolization. That's me though. I'm now struggling with a hormone imbalance (working on correcting it) but I don't miss those fibroids or my uterus at all. I do miss my ovaries though. I hope that helps some??

Thanks for your response, Sreeve. What was it about the embolism that was painful?

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Originally Posted by Muadeb Thanks for your response, Sreeve. What was it about the embolism that was painful?

It's basically like giving your uterus a heart attack. I don't get much relief from morphine so for the first 12 hours it was extremely painful then eased up. 5 weeks later I passed a 3" fibroid as it had degenerated and detached. That wasn't fun either. I think women that it works well for are women who have one or two fibroids of a certain kind. I had multiple numerous fibroids and it didn't work much at all.

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Originally Posted by Sreeve It's basically like giving your uterus a heart attack. I don't get much relief from morphine so for the first 12 hours it was extremely painful then eased up. 5 weeks later I passed a 3" fibroid as it had degenerated and detached. That wasn't fun either. I think women that it works well for are women who have one or two fibroids of a certain kind. I had multiple numerous fibroids and it didn't work much at all.

Wow! That doesn't sound fun. I'm guessing it would not work for me either, as the dr said I'm packed with fibroids. My uterus is the size of a 20 week pregnancy. Ironically I haven't had that much trouble with heavy bleeding even though it can get s bit heavy at times. I do get pain when period starts though.
I don't know if it would be worth it to see if the fibroids shrink very much when I go into menopause. I really hate having this big belly and I am tired of the hassle of periods, and bladder infections. My dr, said that with a case like me with so many fibroids and the few large ones, he usually takes the uterus out. I guess it would be an easier decision if i was in constant pain or something of the sort.
I would like to be able to resume jogging again. I haven't been able to due to pressure on my bladder. Makes me feel as though I have to go to the bathroom the whole time I'm jogging.

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Originally Posted by Muadeb Wow! That doesn't sound fun. I'm guessing it would not work for me either, as the dr said I'm packed with fibroids. My uterus is the size of a 20 week pregnancy. Ironically I haven't had that much trouble with heavy bleeding even though it can get s bit heavy at times. I do get pain when period starts though. I don't know if it would be worth it to see if the fibroids shrink very much when I go into menopause. I really hate having this big belly and I am tired of the hassle of periods, and bladder infections. My dr, said that with a case like me with so many fibroids and the few large ones, he usually takes the uterus out. I guess it would be an easier decision if i was in constant pain or something of the sort. I would like to be able to resume jogging again. I haven't been able to due to pressure on my bladder. Makes me feel as though I have to go to the bathroom the whole time I'm jogging.

Yeah it's a hard decision. They told me I had innumerable fibroids. Too many to be taken care of with the embolization. To me it wasn't worth it. Other ladies might feel differently. But all those fibroids will have their blood supply cut off if you do an embolization and it hurts for a bit.

The thing about UAE that was not made clear by my IR is that fibroids in the uterus after embolization will produce heavy periods for 4-6 months as the uterus expels the dead tissue. This does cause cramping. I found this cramping not as severe as my period cramps. The worst pain for me was right after the procedure. I relied on the Dilaudid pump but ended up getting my pain under control and left early, not even spending the night.

I had 2 fibroids: one in the uterus and a huge one in the muscle. The one in the muscle didnt bleed. It shrunk over time, about 90%.

I'm glad I tried embolization first but what to do is very personal. The thing about UAE or UFE is you don't have instaneous results. The procedure starves it's blood source and it stops growing. You might notice a little more room right away. The uterus recoups and begins to heal. Iron begins to build.

With fibroids in the uterus you have to hang in and deal with heavy bleeding for a few months. With fibroids in the muscle you have to hang in while your body performs the amazing process of disposing of dead, unwanted tissue.

UFE is a process. Nothing is ideal but it is an option to try if it's important to keep the uterus.

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Originally Posted by Muadeb No, dr said the uterus is just to big to do laparoscopic surgery. He can't do it vaginally because if the size and because I would be keeping my cervix. I would also be keeping my ovaries as well. I did want to ask if you had any mesh put in at the time of surgery for support? My dr mentioned it and I told him no. I heard there are many lawsuits from it and a friend's mother is in constant pain from it and has a lawsuit out.

I had mesh to repair an abdominal hernia due to gallbladder surgery in 2007. I've had no problems with it. I think the mesh lawsuits you hear about are talking about an old practice that they don't do anymore. I also have multiple large fibroids and my uterus is size of 13 week pregnancy. Causing me severe constipation for over 3 years, constant urinary issues and I get UTIs all the time. I'm hoping to have my hysterectomy in November this year. Right now I'm doing lupron injections to shrink fibroids and help with my symptoms.