Who had/has large (9cm+) fibroids?

I'd like to hear from women who specifically have or had large fibroids (9cm or larger). Did you have surgery? If you haven't had surgery, are you planning on surgery? What surgery did you choose & why? For those who have already been through it, would you do anything differently?

Thanks so much...

Marian

Marian,

I had a myomectomy 12/8/99 that removed 7 fibroids of which the largest was almost 12 cm's. I was 40 at that time and then finally had my daughter 11 months later.

I also have multiple fibroids now and am trying the depo provera shot to reduce/eliminate my heavy bleeding.

I'm still researching my options and I'll turn 49 next month.

I had a hysteroscopic myomectomy on May 1st for a submucosal fibroid that was about 9 x 10 x 8 cm. I asked the doctor if she had experience with large fibroids and she told me nope, this is the biggest one. They also used a laparoscope to watch my uterus from outside, and to examine another fibroid that was outside, but much smaller (2cm). They left the outside one alone, it wasn't big enough to make it worth cutting out.

It’s about a week and a half after the surgery now, and I’m still having a lot of pain, cramping, and swelling. They were only able to get half of my fibroid in this surgery, because they didn’t want me to absorb too much fluid. I will have to go in for a second hysteroscopic myomectomy in about a month, and I hope the swelling and pain subsides quicker after the whole thing is gone.

I have been on Lupron since March 23-- I'm getting my third shot on Friday. At first, Lupron made my bleeding profusely worse, but then it did stop all my bleeding after that, and allowed the fibroid to shrink enough to permit surgery. The doctor told me she wasn't sure if they would be able to resect any of it in the first procedure, because it was going to possibly be too large to allow her to maneuver. Thankfully, Lupron shrunk it a bit and allowed her to resect half of it. I look forward to the second procedure and having it all over with.

The weirdest part is that the doctor broke two of her rectoscopes on my fibroid. I guess my body had started to calcify the outside of it, so it was really hard on the outside. That weirds me out, thinking of this hard half a fibroid still inside me. Anyway, I am back to taking it easy, even though I have to be back at work. I definitely notice more pain and swelling on days that I have to go to work. This weekend it got better, and now this week I've been sore again after a full day. I have a very active job that involves lifting and a lot of walking.

I'm glad I don't have to have a hysterectomy, but I think there was a good chance it could have gone that way if I wasn't lucky. Hope this helps you out.

	Quote:
Originally Posted by susanc9523 Marian, I had a myomectomy 12/8/99 that removed 7 fibroids of which the largest was almost 12 cm's. I was 40 at that time and then finally had my daughter 11 months later. I also have multiple fibroids now and am trying the depo provera shot to reduce/eliminate my heavy bleeding. I'm still researching my options and I'll turn 49 next month.

Thank you so much for the details! I am very encouraged to hear that you were able to have a myomectomy for a fibroid that was 12cms. And you had 7! My 3 sometimes make me feel like my belly will pop, I can't imagine 7.

I have a phone interview with the president of the HERS Foundation tomorrow (H-E-R-S.org). I can't remember how I found them, but I am eager to talk to them. They are a women's health advocacy group and are firm believers that a hysterectomy should be a last resort. As I understand it, I will be able to get a referral to a surgeon who has experience in my type of case (large fibroids), I am hoping that is so and that I am eligible for other options.

I hope the depo provera helps with your bleeding. My mom went through this at the same age and was hemorrhaging. I have not had bleeding issues (which seems fortunate in some ways, but my fibroids are hard to get to because they are subserosal sp?).

	Quote:
Originally Posted by LucilleClifton I had a hysteroscopic myomectomy on May 1st for a submucosal fibroid that was about 9 x 10 x 8 cm. I asked the doctor if she had experience with large fibroids and she told me nope, this is the biggest one. They also used a laparoscope to watch my uterus from outside, and to examine another fibroid that was outside, but much smaller (2cm). They left the outside one alone, it wasn't big enough to make it worth cutting out. It’s about a week and a half after the surgery now, and I’m still having a lot of pain, cramping, and swelling. They were only able to get half of my fibroid in this surgery, because they didn’t want me to absorb too much fluid. I will have to go in for a second hysteroscopic myomectomy in about a month, and I hope the swelling and pain subsides quicker after the whole thing is gone. I have been on Lupron since March 23-- I'm getting my third shot on Friday. At first, Lupron made my bleeding profusely worse, but then it did stop all my bleeding after that, and allowed the fibroid to shrink enough to permit surgery. The doctor told me she wasn't sure if they would be able to resect any of it in the first procedure, because it was going to possibly be too large to allow her to maneuver. Thankfully, Lupron shrunk it a bit and allowed her to resect half of it. I look forward to the second procedure and having it all over with. The weirdest part is that the doctor broke two of her rectoscopes on my fibroid. I guess my body had started to calcify the outside of it, so it was really hard on the outside. That weirds me out, thinking of this hard half a fibroid still inside me. Anyway, I am back to taking it easy, even though I have to be back at work. I definitely notice more pain and swelling on days that I have to go to work. This weekend it got better, and now this week I've been sore again after a full day. I have a very active job that involves lifting and a lot of walking. I'm glad I don't have to have a hysterectomy, but I think there was a good chance it could have gone that way if I wasn't lucky. Hope this helps you out.

I didn't know they could remove part of a fibroid and go back later. I also had no idea they could calcify (I think that is one of the ways the body protects itself). Oh my, I will think of all kinds of smart aleck comments to make if that happens to me.

It sounds like you could still use more rest. I try to remind myself of 9/11 when I think work is pressuring me. Because at 9:30 that morning, we suddenly realized that all the stuff we thought was so important to do that day wasn't so important any more. It all waited the few days it took for us to get back to it. In the scheme of things, your health will always be most important.

Take care...and I hope time flies until the day you are done with this!

Marian,

Thanks for the kind words and insight. You're right-- I should have taken more recovery time. I will after the next surgery. Yeah, it's pretty crazy to think about calcified half fibroids, but then again before I got these I knew nothing of fibroids or any of the other uterine disorders at all! That's what I love about boards like this, we all get more informed and can support each other.

Good luck on your call and I hope you get a great referral. I'll be sending you good thoughts!

I have a 10+ cm fibroid. My uterus is the size of a 17-week pregnancy. I go tomorrow for an endometrial biopsy and will be scheduled for an abdominal hysterectomy. I tried to see if I could have it done laparoscopically but 2 doctors said I'm too short (5 feet) and my uterus/fibroid is too big. There's no room in there for laparoscopic equipment.

I have an 18cm fibroid, which is about the size of a 6.5 mo. pregnancy. I have thus far experienced few problems, mostly the distention of my abdomen. No cramps, no heavy bleeding, etc. After bloodwork and a few ultrasounds, my gyno has said if I want to continue watchful waiting that she would be supportive. That is what I'm opting for right now; however, I'll probably opt for SOME course of action, as the distention bothers me (it's difficult to find comfortable clothing that fits attractively) and I'm beginning to feel some shifting when I sleep on my stomach.

I have a 9 x 14cm fibroid, which is about the size of a 4 to 5 mo. pregnancy. I also have cysts on both ovaries. I had a lot of problem with pressure, bloating, cramps and occasional backahces a few months ago. Very uncomfortable. I had been scheduled for a TAH in May but cancelled to wait until after summer because of work/personal reasons. Last two months, I've had no symptoms. I'm going back to the dr next week to discuss whether I can just go back to wait and see mode and cancel September surgery. I do feel a ball in my abdomen and it protudes when I lay down, but it's not noticeable when I'm clothed.

I also had a pretty large one. Last utra sound in July showed over 9cm. Heavy and long periods, cramping all the time. I thought I could make it to menopause but I am 48 and might have a couple more years to go yet. This past year I started buying bladder control pads because sanitary pads and tampons no longer worked. When I got to the point that I was sleeping with a plastic garbage bag under me at night and thought about dipers, I knew I needed help. Doctor said my uterus "looked like a turkey" when she removed it. I had a total of twelve fibriods. I didnt know they only dicussed the largest fibriod shown on the utra sound with me. I know the only option for me was to get the surgery. I am very sore still and not back to work yet. I will be out for 6 weeks total. I am healing well, but still very sore with a swelly belly. But I know I made the right choice. I am so glad I have this web site to turn to when I have questions. Thanks to everyone that posts. I try to log in and view a few every day. It has been a great help to me.