Grapefruit sized fibroid, cystocele & 12 wk enlarged uterus options (2009)

I have been suffering from excessive bleeding with large clots and back pain and severe cramps for several years. Went to my Dr and was told my uterus was the size of being 12 weeks pregnant and had a sonogram showing a fibroid the size of a grapefruit which is pushing on my bladder. My dr wants to do a biopsy which i am very scared of doing. During another exam she also diagnosed that I have a cystocyle that she could feel. I am a person very freightened of surgery and needles. all my research shows that an enlarged uterus should be removed with an abdominal hysterectomy not vaginal. I just am new to all this and trying to weigh my options.

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Originally Posted by erorourke I have been suffering from excessive bleeding with large clots and back pain and severe cramps for several years. Went to my Dr and was told my uterus was the size of being 12 weeks pregnant and had a sonogram showing a fibroid the size of a grapefruit which is pushing on my bladder. My dr wants to do a biopsy which i am very scared of doing. During another exam she also diagnosed that I have a cystocyle that she could feel. I am a person very freightened of surgery and needles. all my research shows that an enlarged uterus should be removed with an abdominal hysterectomy not vaginal. I just am new to all this and trying to weigh my options.

Hello Erorourke,

What other options besides hysterectomy did your gynecologist discuss with you? There are many other uterus-saving options that may work for you and that will keep your uterus intact (myomectomy, UAE, etc.,.). If your doctor didn't discuss these options with you or she did mention them but dismissed them at the same time, you may want to get a second or third opinion. Hysterectomy should be the very very last resort.

An endometrial biopsy is a good recommendation. Any women who is having excessive bleeding during menstruation or bleeding at other times during her cycle should get an endo biopsy. This will rule out any other more serious causes of bleeding. If all comes back normal, then you can explore other uterus-saving options other than hysterectomy if you so choose.

I hope this helps in your decision-making. Whatever you decide, it sounds like it would be very helpful for you to get second and third opinions until you are confident of your treatment plan.

Ammuni

Hi Erorourke,

I also had fibroids and they are not fun!!

I agree with Ammuni and get a 2nd or even a 3rd opinion, if you can. I got two opinions myself on my fibroids and it was one of the best things I ever did in my life.

I was 46 when I was diagnosed with two large fibroids. I had never had any gyneo problems until then. Just had an annual exam every year. My Dr. diagnosed the fibroids as 15 cm total and she told me my uterus was too large for a less invasive hyst and she recommended a TAH (Total Abdominal Hyst). I was scared out of my wits!! She also wanted to do a bladder sling since I was having bladder incontinence. Yikes..I was really terrified then!!

I decided to get a 2nd opinion...after crying for (3) days. I had never had a surgery in my life so an abdominal surgery sounded very scary. My 2nd Dr. recommended a LSH, a laparoscopic-less invasive hyst after I did (3) months of lupron shots to shrink my fibroids enough for the surgery type.

I opted to do the lupron shots and my LSH is still one of the best things I ever did for my long term health. I found out after my LSH that my 1st Dr. could *not* do laparoscopic hysts. Funny how she never mentioned that!!

My 2nd Dr. also told me that he felt I did not need a bladder sling since my fibroids were pushing on my bladder and he felt my bladder would operate better after my surgery (which it does!!). So I agree with Ammuni...and get a 2nd opinion on that too.

I might suggest you go to the *Hysterectomy Checkpoints* link at the top of the web site. Click on that and go to the *Pre-op* link and scroll down. It goes over the different types of hysts ( TAH, SAH, LAVH, LSH, TVH, DaVinici Robotic) and questions to ask your Dr.

I found out in pre-op and through being on Hyster Sisters that a Hyster Sister's medical record and a Dr's training and medical experience can all factor into what type a hyst a Dr. recommends. So....do your research and ask *all* your questions. Drs give us options...and we make the final decision when it comes to our bodies.

In the end...just do what is *best* for you. That is what is most important.

~Best wishes~

Mary

Hi erorourke,
I feel your pain.... I also have a large fibroid.... 11cmx10cm and I've been told that it is crushing my bladder and taking up my entire abdominal cavity. I've been putting off a hyst. for 8 mos now and am in pain... but the fear of surgery has been greater than the pain. I don't fear the surgery itself... I fear the after effects. Anyway... I have had 4 different opinions and it has given me options... although with the size, a UAE would likely not resolve the size issue enough, also, I was told by 3 of the 4 Drs. that a myoecetomy would be too risky with the size and location... and would likely result in a hyst. anyway. It hard to make sense of all of this... and sad that you are in pain. I would get other opinions, if anything just to make yourself more comfortable in a decision. I'm considering the LSH... although my gyn says no.... he claims I don't need my cervix...I think that is my decision. Do research and whatever you do... only do what you feel comfortable with, otherwise the emotional healing will last longer than the physical.

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Originally Posted by ziggy_5k Hi erorourke, I feel your pain.... I also have a large fibroid.... 11cmx10cm and I've been told that it is crushing my bladder and taking up my entire abdominal cavity. I've been putting off a hyst. for 8 mos now and am in pain... but the fear of surgery has been greater than the pain. I don't fear the surgery itself... I fear the after effects. Anyway... I have had 4 different opinions and it has given me options... although with the size, a UAE would likely not resolve the size issue enough, also, I was told by 3 of the 4 Drs. that a myoecetomy would be too risky with the size and location... and would likely result in a hyst. anyway. It hard to make sense of all of this... and sad that you are in pain. I would get other opinions, if anything just to make yourself more comfortable in a decision. I'm considering the LSH... althoughmy gyn says no.... he claims I don't need my cervix...I think that is my decision. Do research and whatever you do... only do what you feel comfortable with, otherwise the emotional healing will last longer than the physical.

Hi Ziggy_5K,

I saw 6 gynecologists who had excellent reputations. They all told me my 12cm fibroid could not be removed and if surgery was attempted to remove it, it would result in a hysterectomy.

I was desperate because I didn't want to lose my uterus and I started searching on the interent. I got in touch with a uterine fibroid message board (sorry we're not allowed to list other communities on this message board so I can't mention their location), and I became educated. I discovered that what the gyns I saw were telling me was completely inaccurate.

Through connection with other women, I learned that there were about 6 or 7 fibroid "experts" in the U.S. What makes them experts? These gynecologists do about 100-300 successful myomectomies per year with a horizontal incision and without the use of lupron and with minimal blood loss. Their track record over a 30 year career is excellent and they have never had to convert to a hysterectomy or had a failed myomectomy because their technique is that great. They have even removed basketball size fibroids with horizontal incisions and with minimal blood loss. What I learned most was that the success of a myomectomy depends solely on the skill and experience of the surgeon.

I met other women who had had similar experiences to mine, gyn after gyn telling them their fibroids could not be removed and that they needed a hysterectomy. Some women even had botched myomectomies and then went on to see one of these fibroid "experts" and had successful myomectomies. I consulted with three of these expert gynecologists (one in New York, one in Boston, and one in Santa Monica), and each one of them extensively examined my situation and told me removing my fibroid would not be a problem. They were right! I had a successful myomectomy last September, and it was not a complicated surgery. Had I not persisted, had I believed the first 6 gyns that I saw, I would have indeed had a hysterectomy. Really, I don't know what gave me the courage to keep seeking after 6 gyns told me I needed a hysterectomy, but thank goodness fate intervened.

If you would like the names of these doctors please send me a PM. I'm sure there are many more skilled gynecological surgeons out there, but these are the names that keep coming up again and again. They are very willing to answer your preliminary questions by telephone or by email if you are in another state. Once I sent them copies of my medical records, they were very willing to consult with me by telephone before I met with them in person. Even if at the very least, all you have is a consultation with one of these fibroid experts, it will be well worth your while and extremely eye opening.

One last question, did you see an IR (interventional radiologist) about UAE or did you discuss this solely with your gyn? I've met women with fibroids larger than yours who have had great success with UAE, but their gyns dismissed UAE to begin with. It was not until they saw an IR that they got an accurate assessment. (I'm sure you've done your homework and know this already, but I thought I'd ask anyway just in case).

Best of luck,
Ammuni

Thanks for the information and supportive post. I did have the DaVinci method performed back in July & have been recovering and am very glad that i choose that way instead of all of the other methods. the first two weeks were difficult, however, life has returned to normal!

You mention to send a PM to get a reply with the fibroid specialists names . I'd be interested in Boston. I don't know what a PM is? My personal e-mail is <admin>.

I've currently seen one "specialist" and am not happy that she said the only way to remove my grapefruit size fibroid and other medium sized ones was with a 8" scar up my tummy. I know i will cry every time I get undressed and see that scar, I also know that vertical scars don't heal as well as horizontal ones. I really want a bikini line scar. The scar, the surgery, everything about this is horrifying.

I called to ask a few questions about the procedure and they told me I had to make an appt to get any questions answered. Basically they scheduled the surgery and that's it. They certainly can't expect someone to just show up for surgery without knowing anything about it. So needless to say, I am turned off from this Dr who is supposedly a real specialist in non-invasive procedures.

I am going for a 2nd opinion from another so-called fibroid specialist from Boston who travels to NH a few days a week.

If you would share the names you have, that would be great.

Hi erorourke

Tomorrow will be 8 weeks post op SAH for me. Like you, my fibroid was large, sitting on my bladder, but my uterus was equal to 5 months pregnant. After talking to my doctor, we opted to go with an abdominal hysterectomy. He personally does not like vaginal hysterectomies because of the possibilities of scar tissue which can be uncomfortable when having sex later. Plus, I scar very bad and build extra scar tissue.

Luckily, we did do the SAH because my DR was in for a BIG surprise when he pulled out a 2lb fibroid in the shape of a steak. Not what he was expecting, either. I saw my DR last week and I am happy to say that I am 100% healed inside and out. I never had any discharge, bleeding or anything like that. But, each person is different. I am very happy with my choice.

Hugs!

Hi Ammuni,

Thanks for sharing your experience. I am having the same issue with my doctor. He wants to do Hysterectomy. He has ruled out all options. I read about your story and how a specialist helped you out. Is there any possibility of getting in contact to find out more about this specialist?

Thanks

Rebecca