Conclusion: Not worth the risk

You folks have been great and so terribly supportive through this incredibly painful week. I got calls from my gastro doctor's office who said my blood count and iron count were down and I should take a prescribed supplement. I'm not eating regularly, so I'm sure I will have to be nauseous more often or feel the pain of taking iron on an empty stomach. I have a colonoscopy scheduled in about a month to see if there's a colon problem adding to the anemia and blood count issues. My wls surgeon's office -- angels, angels I tell you -- just sent me all my labs and tests from the last few weeks. They can't help me with the GYN stuff, but they have ordered the tests and is helping me try to find some solutions. I have two types of fairly harmless pelvic masses -- uterine fibroid tumors and ovarian cysts. The right ovary is probably the big bad guy because the cysts has ranged from 6.5 to 4.5 cm since the testing noticed it. The fibroid tumors are inter-woven in the wall of my uterus, not hanging from a stalk. There are at least three of them of measurable size. The largest being 2.5 cm. Basically, there's so much extra crap in my pelvic cavity that it's all pushing into the abdominal cavity and causing this intense pain and nausea. I've deflated the band in hopes of not aggreviating this condition with restriction, but I still feel pretty restricted. I've seen several GYNs in my city and they know that I'm in pain and miserable, but they also know that I've had at least 10 abdominal surgeries and I'm full of scar tissue and it would be difficult to work around all those obstacles. My original GYN has termed it an "inoperable pelvis" and all the others after doing some calling and reading reports side with her conclusion. I am, basically, not worth the risk to an OB-GYN practice. My most recent GYN said today that his hands were tied and if I wanted a referral to leave the state, I could just call around myself. I don't even think he will even look at the most recent labs. Ok, that's where I am. I have 12-pages of labs and reports and I've trying to find a surgeon who can help me. If my local doctors were working with me, I might at least stand a chance to move on without the need to justify leaving my network of providers. Once I find someone now, I will also have to explain to my insurance company why I had to leave the state for one of the most common surgeries performed. Thanks for your awesome support and prayers, Frances

Frances, Just a couple of suggestions that might work. You may already have discussed them with your doc. I just went through heavy bleeding, anemia, et****il I had a Uterine Ablation where it burnt the lining of the uterus to stop the bleeding. You would not be a candidate for that because of all the tumors, but they did talk to me about a treatment where they go up through your leg vein with a devise and zap the fibroids. Maybe you could get them to a manageable size, and then have a vaginal hysterectomy??? I also would insist on different iron treatments. I had IV iron infusions, which are just time consuming and tedious, but not painful. There are no side effect if you're not allergic. It boosts your levels up pretty quickly, and you don't have to take those horrible pills. I cannot take them. Feel better soon...just wanted to mention those things to you.

Frances... I am so so so so so so sorry to hear about your ongoing struggles. Those things should be removed ASAP and I am shocked that so many doctors fear operating due to scar tissues. **** I have seen my band surgeon spend 2 HOURS taking down adhesions laparoscopically so he can do a small operation like a gallbladder removal or umbilical hernia. It amazes and saddens me that nobody will touch you. I know that OB/GYN is a very hard area to practice in due to malpractice suits (being more common and harder to win for OB/GYN). I know that in Florida, OB/GYN practices have you sign an arbitration agreement before they will see you the first time. That is so they will settle out of court if something were to come up. It is sad that our medical professionals are driven by fear of lawsuits, but that is probably part of what you are dealing with. I know of a WONDERFUL pelvic disease specialist in Gainesville, Florida. If you want his number, I can put you in contact with him. He was the standard (and excellent) OB/GYN, but lost his 'zest' for the practice. In the last decade he has really found his calling in pelvic diseases (I went to him for IC). He does everything related to the urogenital system. He is very skilled and I doubt he'd ever turn someone away due to it being a tough case. It will have to be open with that many surgeries, but I bet you figured that anyways. And just because you have had 10 surgeries, doesn't mean that your body is walled off with adhesions and scar tissue. It might not be as "inoperable" as they think it is. I really wish you the best and that you can get proper medical treatment/testing soon! I am just so sorry to hear that nobody will take you as a patient. Please, let us know what happens!

Frances, Good morning!! I simpy do not understand how there doctors are dismissing your problem as inoperable because of scar tissue ...if you have 3 tumors and they are pressing on your stomach and causing intense pain,why can't they be removed .. I have read several times . they can cut thru scar tissue and also remove the excess scar tissue to get to the problem areas .... of course you need a well experienced surgeon who preforms surgeries such as these .. this is what you need to search for .., most really good surgeons are in bigger cities who are willing to take on a problem such as excesss car tissue like Nashville Tn .MemphisTn , maybe Oxford Ms . I have had ovarian cysts and 2 huge fibroid tumors removed in 2 different surgeries.. they caused me great pain and I bled heavily along with clots for 2 weeks out of every month .I became enemic for the first time in my entire life even though I ate lots of protein every day I also had to have Vit B shots every 2 weeks at Dr's office .... after they are removed... they are always sent to the lab for testing for cancer.. your insurance co should completely understand your situation you can not only call them ,but send them a registered letter explaining your predicament always keep a copy so you have a paper trail behind you of all your efferts & always ask and write down who you speak to ,when you called and what they said . tell them you must get some sort of relief from this pain that is has has become unbearable and your quality of life has diminished.. I understand what you are going thru ...all this plus the added aggravation,strain and frustration at getting no relief .. ...I am pulling for you!

I'm going to be praying that you'll find the surgeon that will help you...there's one out there somewhere.

Well, as I said, it just amazes me, how many doctor's are basically incompetent! I hope you find one soon, to help you, hon! I don't know what else to say! My prayers continue!~

Frances, is there anything they can give you to shrink the masses and maybe let you have less discomfort? My mom had massive fibroids that were causing a lot of bleeding and they treated her with what amounted to large doses of depo provera to shrink them. She hasn't needed any further txt for them and it's been years now.

So very very sorry you are going through this, Frances. I just hope that you find a doc who ahs the gumption to perform surgery if that is what is needed and sort this out for you. kate