Fibroid vs. Woman--Fibroid Winning...(long)

Hello All:

It has taken 5mo. and a lot of hard work to get to this point and a lot of determination on my part to keep going w/Drs.--

Well it seem that in the war of Fibroids vs. me-- the Fibroids are winning.
I have Fibroids that are pretty much "taking over."-- lots of really big ones inside and outside....in addition uterus is "sizeable enlarged."

Here's question-- has anyone had this add'l problem
Did you all feel like you were literally running out of room inside of you?
Seems that fibroids/uterus are SO LARGE that they are causing a small intestines and small bowel herniation--basically they are being squished up so much that they are being injured. Now having major gastro probs in addition to fibroid probs that affect gastro.

(Because symptoms were similar to OvCa, went through all the cancer screening tests in addition to gastro tests--CA125 came back at 49, gastro tests still ongoing, ultra sounds, MRIs and CATScans all came back with results that said it was hard to read because they couldn't see much because of the enlarged uterus and all the fibroids. So prob won't know anything for sure until it is out and biopsied...)

Working with 3 diff Drs. basically told them to hurry up and find out what is going on and make a plan cause I really can't take living like this anymore--if this is living...just want to feel good and enjoy life again!
(sorry--cranky from no sleep due to stomach issues.)

They can't get this mess out of me soon enough-- I think i'll have a party in my hosp room! Prob going to have to work with at least 2 surgeons (one gyno one gastro) on procedure.

Sorry for rambling--any comments/advice/experience would be greatly appreciated.
Carol

(((Carol))):

You may want to look into bringing a GYN-oncologist into the mix of doctors. They are accustomed to large masses, and in most cases are trained also in any bowel repairs that might be needed. Your elevated CA-125 (which can indicate a host of issues OTHER than cancer, luckily) still should lead you to a surgical oncologist, who have three years of additional surgical training (in some cases, four) over the regular GYN or colorectal surgeon.

Prior to my surgery, it turned out I had a large ovarian mass that impinged severely on my colon and small intestine, leading to all kinds of symptoms . My scans were also hard to read; in my case, it turned out that all my organs were fused together (so-called "frozen pelvis") from years of endo and multiple surgeries.

It did take some time for all the intestinal issues to resolve themselves post-op. For example, my bowel sounds and later, function, were slower than most to return. I really ate nothing but liquids for about the first week, until I really got back my intestinal function. Now I deal with residual scarring and vascular problems, again due to stage IV endo. But I'm still a whole lot better than I was!

Please, do look into a GYN-oncologist "just in case." If it's not cancer, you're still ahead of the game; your situation will be complex enough to make sure the real "experts" in female pelvic surgery are on your side!

Hope this helps,

Audrey

Audrey S.:
YES one of the Drs in the 'mix" is a gyno onc.

Having a GI/small bowel series Monday so hopefully the Gastro guy will be able to make a definite diagnosis so we really know whatz what and we can get on with this.

Hopeful that the gyn onc will do surgery even though we don't have a definite on the OvCa... I'm not too keen on my reg gyno pretty much ready to ditch this one (already on my 3rd.)

Actually more nervous about the gastro part of the surgery than the hyster....

Question:
In addition to pain midsection and lower abs, did you also have pains on the side-- kind of in line w/belly button but on the sides.

Thanks so much for your help!!!!
Carol

Hello fibroid woman, from another fibroid woman. I don't have the blood issues you have but I do have fibroids something like the size of a football. Yep, they hurt 24/7 cause me to feel like I need to have a bowel movement all the time, and everyone kids me about needing to urinate every 15minutes. I work out alot, and am in excellent shape dispite this problem but I find that if my abdominal muscles get tight, it is way worse. Also my fibroids are so large I've had to stop doing many exercises I liked, just can't get around them anymore. I'm scheduled for TAH/BSO in late April, and looking forward to feeling new/normal hopefully not like I swallowed a bowling ball. Get all the doctor work in you can, it is a luxury. The world over women have to suffer with these huge things untill like my grandma, one broke off and she bled to death. It's no fun to get all the doctor stuff in, but a good idea. My doctor scanned for kidney stones and gallstones thinking if I had any they could be treated or removed at the same time. Not a bad idea I thought. Love Noom

HI Ladies:
thank you SO MUCH...

After a while you really start to think that you are some freak that nobody either believes or wants to deal with--

Up to my 4th gyno and looks like he pretty much is avoiding me as well cause I have left a bunch of messages and no call-- he watned me to go for embelization first then hyster so it would be smaller surgery for HIM to do--told me that this would be a difficult procedure--oh well too bad! So I guess I am on the search again--

LOVE my Gastro he is incredible--so I am going to talk with him after the upper GI results come back and see who he suggests to do the total surgery...The gyno onc is nice--really a higly respected Dr so not sure if I can get him to do the surgery if there is no "glaring" evidence of OvCa (though you really never know until the biopsy is done.) I am pretty much going to beg him to do it--so hopefully he will.

SO FRUSTRATING!! I have been through SO MANY Drs...and readying all the posts here it seems that EVERYONE goes through the same bullcrap-- it's really incredible!!

When I looked into the embelization and talked to my Gastro about it-- I realized that this is experimental and kind of dangerous. Would a man shoot plastic PVC pellets up his groin, kill an organ, and let it sit and rot inside of HIM???

You like to think that we have come so far as women--but when you get to health issues I thinkwe are still back in 1950!!

I keep saying I hope this is the week that I finally have a plan--but I remain the eternal ooptimist and , hope that this week will be the week that it is all decided! Really bad timing-- usually love to go our for St Patty's Day-- and my b'day is also same week-- oh welll-- will just move the celebrations to afterwards...

Come to think of it Thanksgiving and the Holidays and New Years pretty much were "washes" cause of my various stomach issues--I really used to enjoy life--can't wait until I can again!!


thank you for letting me vent!!
Regards and (((HUGS)))
Carol

Hmm...I have a set of alien quints, one is a grapefruit, the other a pedunculated football, the other 3 not too much smaller I believe... The football used to interfere with my digestion like mad. I cut out all fruit and nuts, because they seemed to be bothering me the most. I took a lot of Tums and Gas-X. Now I get occasional burping fits, but the acid feeling is gone. I squeeze my intestines around my fibroids a lot sometimes, to get things moving. I know bloating symptoms etc. can be from ovarian cancer, but I'm keeping my ovaries. There's just no particular reason to believe cancer has anything to do with it.

My gyn does a uterine biopsy before surgery, but he couldn't do one on me because a fibroid was pressing down on my cervix. But he said that according to the ultrasound my endometrium lining was thin, so I wouldn't have uterine cancer at least.

Just get the **** things out. You're worrying too much about everything else, I think. You may lose too much weight, if you wait too long, from being afraid to eat. I lost 20 pounds in 2 months because I cut my food in half to ease my digestive problems. I got so weak and scared, don't let that happen. Make sure your iron is the digestible kind, and take it with food.

What do you mean, herniated? What are your symptoms? Hernia means the intesting is pushing through a muscle or something. I wouln't get intestinal surgery if I didn't have to. Chances are you just need the fibroids out, and your guts will settle down. Try taking certain foods out of your diet and eating smaller portions, and see if that helps. I did that, and now I'm able to reintroduce orange juice, even tho my fibroids are l just as big as they were before. Sometimes your guts just get overwhelmed.

Yup-- herniated--being s-q-u-e-e-z-e-d through-- sounds gross but you can actually feel it on the lump on my midsection (feels all bumpy and werid)--which by the way keeps getting bigger. Also-- my sides are all swollen too-- so I pretty much kinda look like the Michelin Man with this big tire around my middle and the big belly cause of the uterus/fibroids!! (It's really attractive!)

Went on line and read ALOT about Small Bowel Herniation and I am liteally "text book"--which is what my GASTRO keeps telling me,

Back to mostly liquids and cleansing AGAIN today for tests tomorrow morning--

This time instead of just sending reports I am going to get the actual films to take w/me to appts w/ gyno onc & hopefully the "general surgeon."

In the meantime I am trying to go about my life as "normally" as possible---

I am getting myself all setup so that when the date is FINALLY set I'll be ready to go and I won't have to first start thinking about what to get and do--Suggestions on Pre/Post Op boards are invaluable--so many great tips!!

Thanks so much for all your support!!
Carol