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Large fibroids and LAH- how large is too large? Large fibroids and LAH- how large is too large?

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  #1  
Unread 02-28-2009, 09:29 PM
Large fibroids and LAH- how large is too large?



I am so conflicted. I have 4 large fibroids, 12 cm x 10 a 7 cm, a 6 cm and a newly found 5 cm. I have hard somewhat heavy bleeding in the past, but at the moment I am mostly asymptomatic. Well except for the bulge, but I can still do up my pants.
My Doctor who is the second one I have been to, is suggesting doing a second ultra sound in 3 months and just monitoring. She also mentioned UAE, and the MRI machine which I would have to go to another town to do. I also got a phone number of a Dr who could do a myomectomy.
I am very concerned with recovery time and want what ever I do to be done lathroscopically if possible. So I am worried about waiting longer because I know these aliens in my body are still growing. My doctor is nervous about doing a purely LAH (hope I am getting the letters right) because of the size of my fibroids, but thought it could be done if she called in another specialist to assist.
How big were your fibroids and what kind of surgery were you able to have?
Sorry I am going crazy trying to find out everything I can to make recovery be as easy as possible.
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  #2  
Unread 03-01-2009, 07:57 AM
Large fibroids and LAH- how large is too large?

Hi willowstar. Welcome. I had 5 fibroids smallest being a little over 2cm, largest being 4.8. Uterus was 12 week size. I had to have a TAH. My doc said that my uterus was 2 large and distorted to do the other kinds of surgeries. I have had 3 babies. Maybe you can gain more insight from others on the board.
  #3  
Unread 03-01-2009, 08:38 AM
Large fibroids and LAH- how large is too large?

Hi Willowstar,

Welcome, sorry you are dealing with those pesky fibroids. I too had very large fibroids and was concerned about recovery time. You are not crazy unless I was too. I'll tell you how I decided how to handle them.

I was in my mid 40s when diagnosed with fibroids. The Doc and I discussed: Myomectomy, big surgery, long recovery, no guarantee they wouldn't return. I turned down BCPs which may have slowed the growth and eased my PMS symptoms (I believed the negative hype). UAE didn't appeal to me--again no guarantees and I didn't like the idea of clogging arteries and dying tissue in me. We decided to watch and wait, my only symptom was heavy periods. My Doc retired and I started seeing a new one. He offered me all the above again and Lupron. I did a couple months of Lupron which shrunk the fibroids and stopped the bleeding for a short while. I stopped the Lupron early because I didn't like the menopause symptoms.

Fast forward to a couple years ago when my bleeding suddenly got so bad that I ended up in the hospital getting blood. That convinced me that it was time to do something. I told the Doc I didn't want 6 weeks of no golf! He said Oh (he is a golfer)! Then you need a LSH. Three week recovery. I started the Lupron again to shrink my 5 month sized uterus to make the surgery easier. Doc said I could stay on the Lupron until I was ready--after golf season. I planned to wait till fall which was was 8 months away. At 5 months of Lupron and a much smaller uterus I decided to go ahead with the surgery. It went well, I had little pain for a couple days that didn't require any more than ibuprofen after an overnight in the hospital. I was driving at 5 days, grocery shopping at 6, golfing at three weeks. I could have taken care of myself at home alone with no problems. It was a good decision for me.

I had ultrasounds during the years of waiting and watching to monitor the growth. My Doc never pushed me toward any procedure, just offered. When my bleeding suddenly got so bad it was life threatening he said I would need a hyster right away if the Lupron didn't work, it worked. It takes a very skilled surgeon to do a LSH on a woman who is overweight and has huge fibroids like I had. Not all Docs can do it and tell you that you are not eligible. You do need to have a healthy cervix if you want to keep it. A LAVH requires a vaginal cuff, it needs 6 weeks to heal. Your uterus is removed through your vagina which can be limiting based on the size of your fibroids. During a LSH the fibroids are ground up and removed through small incisions in your abdomen, no big incisions to heal. There is lots of info on this site, you can even watch videos of both procedures if that's something that would help you decide.

I hoped my fibroids would shrink with menopause, at 55 I had no shrinking and no sign of menopause. You should look for a Doc that is skilled in laproscopic surgery or maybe even someone who does Da Vinci assisted procedures if that's what you want. Take charge, its your body. Keep asking questions, keep looking until you find what you feel is best for you. You have options.

Best wishes, keep us posted.

Pat
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  #4  
Unread 03-01-2009, 01:17 PM
Large fibroids and LAH- how large is too large?

Hi Willowstar,

I think you have some very legitimate concerns. I saw two Drs about my (2) large fibroids. Both my Drs felt if I had done a wait-and-see...my fibroids would have kept growing and I would have only been a candidate for an abdominal hyst.

My 2nd Dr. recommended a laparoscopic hyst. Like PattyPat... I also did lupron and then I had a LSH. I did (3) months of lupron shots to shrink my 15-week uterus with fibroids down to a size more workable for my Dr....so he could perform the less invasive hyst. I am still very pleased I was a candidate for a LSH.

Just do all the research you can....and ask all your questions. In the end.....just do what is best for you. That is what is most important.

Sending best wishes~

Mary
  #5  
Unread 03-01-2009, 09:20 PM
Large fibroids and LAH- how large is too large?

Hello~

I am currently Pre-Op. We orginally found my fibroid when I was carrying my 2nd, however afterwords it had shrunk seemed to go away. Fast forward 6 years, and it was back. My dr wanted to wait and see if it would go away, now 6 month's later it is too large to do a LSH and can only do a TAH. Also, with the risk of it returning and since I am so far away from Meno (I'm 31), removing the uterus is the best option. My advise, don't wait too long to address the problem. I wish I had done something sooner, maybe I wouldn't need a TAH. Also, from reading the posts here, it seems that those who go into the surgery with a positive mind and a game plan seem to have recovered faster than those who agonized over it. Keep your chin up!

Vicky
TAH scheduled for April 1st, keeping for sure 1 ovary, maybe both.
  #6  
Unread 03-01-2009, 09:45 PM
Large fibroids and LAH- how large is too large?

Thank you all so much. You have all given such good advice.
The thing I am finding so difficult is that I have to see multiple Dr's. It is really hard to walk into a new office tell my story and ask for help.
VickyT do you just have one fibroid? Do you know what it measures?

I could ask my present Dr about Lupron and see what she says.
She also referred me to a specialist in the nearest major city who is a super surgeon ("a cowboy" as she put it) who might want to attempt a LSH.

I got a little freaked out last night when I watched the Myomectomy tape showing the removal of a 5cm fibroid that was HUGE. 5 cm is my smallest fibroid so it put things in perspective.

Even though I am asymptomatic I need to do something sooner rather than later.

And VickieT I do agree with you. My surgery will be planned, my pre surgery activites will be planned so I can go in with a feeling of control and positive energy.
  #7  
Unread 03-03-2009, 06:59 AM
Large fibroids and LAH- how large is too large?

Hi Willowstar,

Seeing lots of different DRs can be stressful. Did you see the cowboy Doc? Sounds cool. It's good to know you checked out all the options and make an informed decision. No regrets can help you through.

The Lupron worked well to shrink my fibroids temporarily, the side affects were a little rough but worth it for me. I watched and waited for about 7 years and there was no question about my need for a hyster by then. Hyster is only one of many options and the most drastic. Fibroids, as you know, don't absolutely need to be treated.

If you want a minimally invasive procedure, don't let the doc tell you that your fibroids are too big. That shouldn't be the only limiting reason. Mine were huge (784 gm uterus) and I was overweight making it an even more difficult surgery. Make sure you are comfortable with your decision. Not all docs are the same and will give options based on their own experience and skill set.

Sorry the myomectomy video freaked you! I find watching the various videos very helpful, even comforting. I like to know exactly what's going on and the docs sure don't have time to give me all the details I would like to have. Did you watch the LSH video?

Keep on researching, you will find an answer that is right for you.

Pat
  #8  
Unread 03-03-2009, 09:04 AM
Large fibroids and LAH- how large is too large?

Pat,
Thank you so much for the response.
It wasn't the medical part of the video that was interesting. It was more when they said "This is a large fibroid of 5 cm x 6cm." And I thought Wow, my smallest fibroid is 5 cm and look at how much space that one fibroid takes up! I guess when they say 5 cm it is hard to envision just how big that actually is.
Seeing the video makes me realize that I really have to do something and sooner rather than later. Before my small symptoms get worse and my large fibroids grow even larger.

What were the side effects you experienced with Lupron? I have read it can be rough, but since I have never experienced a hot flash I can't imagine it is that bad. Even though I have heard it is debilitating. What I worry most about is just changing my hormones. I have always had horrible PMS and am finally somewhat balanced, to change things might put me over the deep end.

I haven't been to see the "cowboy" surgeon yet. I will call for an appointment today. He is 3 hours away from me, so I have to plan it. I also found another Dr closer who does the Da vinci surgeries, so thought I would check him out. It all seems pretty epic when I look at the big picture, so I am trying to cut it down into bite sized pieces.

The other thing I am worried about besides the fibroids is how thick my uterine wall is. It has been abnormally thick since my first ultra sound in 2006. No Dr. has explained why.

My Dr also mentioned UAE and the MRI treatment. From my research I don't think I am a good candidate for either, but might at least check out those options before I make my final decision.
  #9  
Unread 03-03-2009, 05:47 PM
Large fibroids and LAH- how large is too large?

willowstar,

Lupron was sorta like menopause. Though I've found that when my estrogen is low, now post op, I feel worse than I ever did on Lupron. I was Rxd 5 mg progestin (Norethin Ace) as add back therapy. I think it helped me feel fairly well. My biggest complaints were hot flashes and achy joints. The hot flashes were not bad enough to wake me at night very often. They can get bad, just didn't for me. The achy joints may have been caused by parathyroid disease I had at the time. I lived my life just fine while on Lupron. Some women had a much worse time of it than I. From reading here I've noticed that the add back therapy seems to help. A knowledgeable doc is critical. Some women got estrogen as add back.

Each woman is different and will react in their own way to any treatment. I have read some horror stories about Lupron too. Age may be a factor. I was 54-55 while on it and close to natural menopause (ya think?). I had bad PMS too and the Lupron helped with that. After a month or so I stopped having heavy periods. That was good.

Wonder why your uterine wall is thick. If you are having a hyster, that will surly take care of it! lol

The Da vinci may be a good option. Women here seem satisfied. That is one I wasn't offered.

Good luck, Pat
  #10  
Unread 03-04-2009, 06:57 AM
Large fibroids and LAH- how large is too large?

Hi, when they 1st found my fibroid it was 9cm. We took the watch & wait route. My mom & aunt had fibroids & they went away during menopause so they told me to wait. I was 38 at the time. Well we watched it grow all the way to 20x14x12. Then the Dr. said enough we have to get it out. So at 43 I had to have a TAH because w/the size of the fibroid & my 5-6 mos uterus laparoscopic was out of the question. During surgery which started as a bikini cut turned into a vertical cut as well because the fibroid was all twisted w/my intestines. The fibroid was also suspicious looking so I woke up to having my cervix & ovaries taken out as well. The Dr. talked w/my dh & parents & they all felt if there was a chance it could be cancer just take it out. Thanks God it wasn't but thinking back I should have gone w/my gut & had surgery years ago. I know the chances that fibroids are cancerous are rare, but still this was something growing in me & shouldn't have been there. Plus, I hear from people & some doctors that fibroid don't always shrink after menopause. Also, recovery wasn't bad. I wasn't in pain I just really didn't do anything & rested. To celebrate 4 mos from surgery I went for a 5 mile bike ride with my family this weekend. I haven't been able to ride a bike for at least the last year & a half because it hurt were the fibroid was.
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