Looking for some insight from members who had large fibroids

Hi,
About three years ago I found out I had severe anemia. We found the cause to be a very large fibroid. My doctors were surprised I had not really felt any symptoms like passing out or breathing heavy during exercise. I always had heavy periods so heavy bleeding was just normal for me. I have a very physical job and I am from the generation of.... just deal with it- you'll be fine- so it was just my "normal". A hysterectomy was recommended at the time but not pushed on me when I wanted to wait. Now, three years later, I know in my heart it is time to consider the hysterectomy. My doctor said because of the size of my fibroid I would have to have abdominal surgery. I have looked on this site from time to time. I joined because as I have done with many decisions in my life, I like to talk with people who have been through what I am going through. I am curious for those of you who have had a very large fibroid like mine and had surgery.... Was it worth it? Are you glad you did it? How long did it take before you could really exercise again? I just had my yearly and we discussed the hysterectomy. I asked her how much it would shrink after menopause and she said for most women about 20%. I also asked if any of her other patients with a fibroid as big as mine did not remove it. She answered.... no, they all removed it. I do feel very comfortable that she is not pushing me one way or the other. I am making my final decision at the end of the week. Any insight would be greatly appreciated.

I was in a similar boat. I even took lupron two different times in an attempt to shrink the fibroids enough to alleviate my symptoms until menopause. Didn't work, they just got bigger and bigger. I was having issues with pain, had stomach issues and had to urinate frequently because of the pressure. I also had TAH, and I felt better pretty much immediately. I had a very easy recovery and was walking well over a mile by a week. I was cleared for harder workouts at 6 week. For me it was totally worth it.

Hi Ilove ladybugs to HysterSisters!

I had numerous uterine fibroids and a very large complex ovarian cyst (12x9x11 cm). The cyst was my main problem, and was pushing other organs around including my bowel, bladder, and uterus. I also had a cancer concern. My gyn onc did a TAH BSO. While I was not happy about having this surgery, it was the best option given my circumstances. After my surgery, my bladder was much happier having space again, and my urgent need to urinate went away. So that was a positive.

I am a power walker, and am in good physical condition. Still, I did not have as easy recovery as ((coughy)), although I think my recovery was not very unusual. I went back to work to a moderate stress desk job after 3 weeks, but could only do part time work for another 4 weeks. I then returned to full time, but no OT.

I was walking the day after surgery, and did brief and frequent walks daily, slowly increasing speed and distance. But, it still took about 9 months before I was walking at my pre-surgery speed and distance.

Everyone is different, and every recovery is different. It is dependent on a myriad of factors, many that are unknown until you are there.

Whether or not you have this surgery, and whether it is worth it is up to you. You can go through the pros and cons with your doctor, given your current medical condition.

Make the decision that is right for you.

Hi I Love Ladybugs, and welcome.

That is a difficult decision to make.

It sounds like you have a similar situation to what I had. I was 42, and had large, growing fibroids that I had put off doing anything about for several years. I had fairly heavy bleeding, but not enough to make my blood count low. I looked about 6 months pregnant, and my normal pants were tight because of the size of my uterus.

I loathed the thought of a hysterectomy. I first threw myself into researching alternatives. However, because of the large number of fibroids that I had, and the large size of my uterus, alternatives didn't look to have a high rate of success. Leaving them was an option, but not a good one in my opinion. First, they were growing at a steady pace, and more and worse problems were likely. Secondly, the amount and duration of bleeding was increasing. Also, vainly, I didn't like my appearance. Finally, my husband and I had very good insurance coverage for now, but who knows about where things are going with the healthcare system in the future. The easy availability of elective surgery in the future was a concern of mine.

I finally decided, with some husbandly encouragement, that this needed to happen. Then, I threw myself into researching about hysterectomies. I strongly suggest educating yourself as much as possible, although it sounds like you have a good doctor. Mine...was really pushing the hysterectomy (total) on me.

I ended up deciding on a supracervical (also called subtotal, or partial) hysterectomy - keeping my cervix, which was healthy with no risk factors. I had to argue with the doctor for this procedure.

Anyway, I'm 9 weeks out from the surgery, and I wish I could have told myself months ago that it would be so much easier and results better than I thought. I kept both ovaries, fallopian tubes and cervix. By the third week, I was back to work, and my the fourth week, I felt completely myself again, except for the giant uterus and heavy bleeding being gone.

Best of luck on this journey.

How big is your fibroid(s) exactly? I know some people on this site feel they have huge fibroids because of what their doctors tell them but in reality they are small in the scheme of things which gives them a lot more treatment options. There are definitely women on here who have large fibroids. My biggest is 18.9 cm and I have two other ones. I don't have any major symptoms from them. I do have heavier bleeding for me but my heavy is a joke compared to many women here and totally manageable. I also feel fat.

I personally think a hysterectomy is a last resort for me so am going to try a UFE for my fibroids. I did have one GYN tell me a hysterectomy was my only option and actually berated me when I told her I didn't want one. My new GYN is in support of me doing whatever I feel is right for me. Several doctors have recommended a Myomectomy but my GYN would only remove two of the three fibroids because one is in a bad location. I want to treat them all which is why I chose to do a UFE.

I would recommend getting a second opinion - just to get a different perspective. I have seen 4 GYNs and 2 IRs each has a very different opinion and treatment options. Hysterectomy is a major surgery with many potential complications. Are you willing to accept worse case scenario if you are one of the unlucky few? Only you can decide if your quality of life is bad enough to choose this option. Mine isn't but I recognize that something needs to be done. It is also very hard for me to get the time off from work. 2 weeks versus 6-8. 2 weeks is going to be hard enough and I have to hit the ground running again once I am back.

Get another opinion. It is truly helpful.

I am 3 days post op from robotic assisted laprascopic total hysterectomy. When the doctor removed my fibroid and uterus (vaginally) it weighed 700 grams (almost 3 pounds...normal uterus should weigh around 70 grams or almost 3 ounces). I am still healing but already am feeling better and glad I made this decision.. I was very uncomfortable before and only had access to a quarter of my bladder..hope this helps...good luck to all that are making decisions

	Quote:
Originally Posted by Ilove ladybugs Hi, About three years ago I found out I had severe anemia. We found the cause to be a very large fibroid. My doctors were surprised I had not really felt any symptoms like passing out or breathing heavy during exercise. I always had heavy periods so heavy bleeding was just normal for me. I have a very physical job and I am from the generation of.... just deal with it- you'll be fine- so it was just my "normal". A hysterectomy was recommended at the time but not pushed on me when I wanted to wait. Now, three years later, I know in my heart it is time to consider the hysterectomy. My doctor said because of the size of my fibroid I would have to have abdominal surgery. I have looked on this site from time to time. I joined because as I have done with many decisions in my life, I like to talk with people who have been through what I am going through. I am curious for those of you who have had a very large fibroid like mine and had surgery.... Was it worth it? Are you glad you did it? How long did it take before you could really exercise again? I just had my yearly and we discussed the hysterectomy. I asked her how much it would shrink after menopause and she said for most women about 20%. I also asked if any of her other patients with a fibroid as big as mine did not remove it. She answered.... no, they all removed it. I do feel very comfortable that she is not pushing me one way or the other. I am making my final decision at the end of the week. Any insight would be greatly appreciated.

I was diagnosed with uterine fibroids three years ago. One was 9cm & the other two were about 2cm. Partial hysterectomy was discussed at that time but I decided against it then. Thought they would shirnk because I was in my late 30's(Nope, I was wrong.). My doctor was supportive of my decision & monitored the fibroids at every yearly exam I had. For my check up in December 2014, found out I had two more fibroids pop up. My periods were starting to become more pain & unbearable. Always knew a partial hysterectomy was an option but was scared to go through with it. My doctor gave me several websites to go research hysterectomies. After doing my research on hysterectomy & uterine fibroids, I made the decision to have the hysterectomy. Allowed myself to grieve but also reminded myself it was for the best. I have no husband & no children but I do have a nephew who I consider to be my own child as well as many "nieces & nephews" from my friends to spoil. Got my surgery date while my mother was in the hospital(Unfortunately, she passed away four weeks ago today.).

My doctor chose to do my hysterectomy laproscopically. Everything went fine until it came time to remove my uterus. It did not want to come out easily, so the doctor made a small incision below my pubic bone in order to get it out. After I was in recovery, I found out I had two big fibroids & the rest were medium to small size.

Recovery so far has been good. Trying to lay down in my bed the first two nights were the worst because of all of the gas that was still in my body because of the surgery. It was painful but once I took one of my pain pills it was okay. My sister was here to help me for three days after my surgery.

Went for my post op appointment on Thursday. After hearing the pathology report, I am glad I had the hysterectomy. There were 25 fibroids throughout the uterus that they could count. My uterus was about 1 3/4 lbs. Was released to drive. I have been walking. I go for short distances & time when I do.

Hope this helps. I was so scared to make this decision but it has been a good one.

All of your stories of your own experiences are helping me. I do know in the end only I can make the decision. I have read a lot about hysterectomies- especially in the past year. I do feel like since I found out the fibroid only got bigger. I did not 100% pay attention to the measurements and the last time I heard them was over 14 months ago. I believe it is 16x9x5.5 I do have frequent urination which I have had for years. I was almost glad when I realized there was a reason for it. I take iron and my anemia is gone. I am on the depo shot to control bleeding and I take blood pressure medication. I have played the pro/con game. I think I know the pros out weigh the cons. Thank you for your stories. Believe me- I do not want to go through surgery but it would be so nice to have this gone. I look pregnant too and I never did before except when I was with my daughter.

I had UFE for a large intramural fibroid that measured at least 9 cm. I had extremely heavy bleeding, cramping and terrible bloating. I looked pregnant and felt terrible all the time. I could not wrap my head around a hystetectomy as I never expected to have one. The fibroid at age 47 was my first reproductive problem. I investigated and waited too long but eventually I had UFE. My uterus measured at 22 weeks and now 2.5 years later my uterus measures in the range of 4-6 weeks if that. UFE is a progression. It took time to grow these fibroids and it takes time for the body to absorb them once they are dead. The good news is they are dead and much of the troubles they cause ends immediately. This is a non invasive option where 85+% of those who have it end up extremely satisfied. It is a great option for us who don't want surgical menopause or who fear surgical mishaps of which there are many.

	Quote:
Originally Posted by Ilove ladybugs All of your stories of your own experiences are helping me. I do know in the end only I can make the decision. I have read a lot about hysterectomies- especially in the past year. I do feel like since I found out the fibroid only got bigger. I did not 100% pay attention to the measurements and the last time I heard them was over 14 months ago. I believe it is 16x9x5.5 I do have frequent urination which I have had for years. I was almost glad when I realized there was a reason for it. I take iron and my anemia is gone. I am on the depo shot to control bleeding and I take blood pressure medication. I have played the pro/con game. I think I know the pros out weigh the cons. Thank you for your stories. Believe me- I do not want to go through surgery but it would be so nice to have this gone. I look pregnant too and I never did before except when I was with my daughter.

I have to ditto most of what has been already said.

I tried ablation and resection of the fibroied a few years ago, wanting a hysterectomy to be a last resort. I was hoping to buy myself some time until menepause, but the relief was mild and short lived.

I at week 5 right now, and I can say that I have no regrets. Yes, it is major surgery and I planned for the entire 4 week off of work, but so far I am very glad I went through with it.

My bladder is slowing feeling better and I was actually looking at sexy lounge wear the other day at the mall. I went to take "my tampon" out last night and remembered I wasn't wearing one!! Just go so used to everything revolving around my heavy bleeding.

Lastly, I struggled because I wasn't really in pain. Just heavy bleeding with clots, and lots of pressure on my bladder.

I fought the decision for about 5 years. Some are able to make the decsion over night. And that is wonderful. Some of us just take longer.

Good luck!