HUGE Uterus at 36 weeks size

Hi. I have had fibroids for about 13 years and my uterus is now just below my breast at the top of my ribcage which I was told is a 9 month size. When I last had insurance 3 yrs ago the Dr did several tests and I saw a specialist and all other hyster options were ruled out because of the size and location of the fibroids. Part of the reason I have done nothing so far is because I have never had any side effects. No pain or heavy bleeding. Nothing different than before the fibroids except that I look about 4 mos preg. Luckily it does not look full term even though the uterus at at that point. BUT, lately I have been having a really uncomfortable feeling of pressure and am worried a hyster is in the near future. I was also waiting to get married to have kids and since I just got married it's too late for that. Also I have a skin problem where my skin doesn't heal correctly and I have to be careful not to get cut. The insurance I have now excludes anything gyno because of the pre-existing cond. I am TERRIFIED of this surgery partly because I know I will have major problems with the surgical cut and I am worried of the surgery being so risky with the size of the fibroids. Also I have no insurance now and it will be months till I find another job, wait the waiting period to get the insurance, than see if a new job will pay for a major surgery.

Hi PamelaRose~
This sounds like a very complicated situation that you are in. I hope that you do end up with an insurance plan that will open up some options for you. Hopefully you are able to find a specialist that can work with you despite your skin condition. I am sending positive thoughts your way!

Dear PamelaRose,

I echo cmtsp's post; it sounds like a situation that is challenging and I pray you'll be able to resolve it somehow. Even though it's a pre-exisiting condition; I do hope your insurance company will rethink it's decision to not cover anything gyno related. That's a very large uterus to have....what do your doctors think? Are there any alternative options that can be done?

Please keep us posted. Many hugs to you...

~Chrys

Hi. Thanks for your responses. I have private insurance and I had to sign a waiver stating that nothing gyno, not even cancer, would be covered, ever. I am searching for a job with benefits. It's not that easy these days. My current job is p/t and does not offer benefits and they have no f/t openings. I had looked into all options several years ago when I did have insurance. Between the size and location Exablation was ruled out. I saw a specialist about getting a UAE. He said he would try but with the size it probably wouldn't make much difference. I skipped it since he was not optimistic. My skin condition is really the main reason for putting this off. I am in chronic daily pain form a 2 inch scar on my shoulder from minor surgery 20 years ago. Some nights I can't sleep cause the pain is so bad and I have several really bad days a month where I am screaming from pain. This has been 20 years from a little scar. I fear I will be disabled from pain with such a big hyster scar. Thanks for your support.

Wow, that is a lot to go through. Do you see a pain specialist?

It sounds like you might want to try for a surgeon who can do a vaginal rather than external incision. Your fibroids are pretty big, but there may be a specialist who can do it vaginally. You may still be able to get a myomechtomy too, instead of hyst, even though huge, if you want kids. Worth a try. I have read of people who can still get that procedure even with the giant fibroids.

Finding the right surgeon / second opinions might take some time, so would be a good idea to get started even while you are looking for better job/insurance to cover possible surgery. Then you'll at least know your options and what you are facing.

I had giant, and largely asymptomatic fibroids too - they were taking up the whole abdominal cavity. I guess not totally asymptomatic as there are problems that develop when they take up that much room with pressure and bending over and breathing.

Those options you spoke of were also out of the question as they were too large. I deliberated for some time, and at the rate they were growing (quickly) and starting to rule my life , I decided to get a hyst as it was inevitable... 'watching and waiting' had already closed up all of my surgical options and I knew it would only just make my TAH more difficult if waited. That said, I was in a good position with respect to being covered.

Will send out prayers for you for success in finding all the answers and support you need.... remember, there are lots of sisters here for you -- so search the forums for more answers. Also there is more fibroid stuff on a website called fibroid geek.

All the best!

I just deal with the pain until it gets really bad then I take over the counter meds. Sometimes they help sometimes not. I don't want to get into persc heavy duty meds because most of them are addicting and this is a constant thing that isn't going to ever go away.

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Originally Posted by cascadia It sounds like you might want to try for a surgeon who can do a vaginal rather than external incision. Your fibroids are pretty big, but there may be a specialist who can do it vaginally. You may still be able to get a myomechtomy too, instead of hyst, even though huge, if you want kids. Worth a try. I have read of people who can still get that procedure even with the giant fibroids. Finding the right surgeon / second opinions might take some time, so would be a good idea to get started even while you are looking for better job/insurance to cover possible surgery. Then you'll at least know your options and what you are facing. I had giant, and largely asymptomatic fibroids too - they were taking up the whole abdominal cavity. I guess not totally asymptomatic as there are problems that develop when they take up that much room with pressure and bending over and breathing. Those options you spoke of were also out of the question as they were too large. I deliberated for some time, and at the rate they were growing (quickly) and starting to rule my life , I decided to get a hyst as it was inevitable... 'watching and waiting' had already closed up all of my surgical options and I knew it would only just make my TAH more difficult if waited. That said, I was in a good position with respect to being covered. Will send out prayers for you for success in finding all the answers and support you need.... remember, there are lots of sisters here for you -- so search the forums for more answers. Also there is more fibroid stuff on a website called fibroid geek. All the best!

Sounds like you were in a somewhat situation. I know finding the right surgeon will be the key to this. The last 2 Drs I saw both said a myo was out of the question. They both said the uterus would be in so many little pieces after removing the fibroids that it would be almost impossible to put it back together. And so way would it be strong enough to hold a pregnancy. They also said that doing it vaginally was also out of the question because of the size. If surrogacy wasn't close to 6 figures I would have them take my eggs but I don't have that kind of money lying around. I have already started looking for a good Dr.

do you qualify for Care Credit? try that.

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Originally Posted by Jussayin do you qualify for Care Credit? try that.

Thanks for the suggestion. I never heard of Credit Care. But I know could not qualify for any type of aid. That's not an option I would even look into. If I go back to a full time job I will get coverage, it will just take some time. My husband is self employed so that is why we have private insurance.