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Old 03-22-2013, 11:05 PM   #16
HugsForEeyore
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Arrow Sending positive thoughts!

I been following your posts here and was hoping to hear an update - wishing you the best!!

I went through something similar recently. Last fall, I wound up in the emergency room with intense pain in my lower right side and couldn't keep any food down. Had a cat scan, which revealed a 13 cm cyst on my right ovary. I had no idea it was there. The doctors were very concerned which like you, led to a series of tests over a few weeks including the CA-125 blood test. I did not do well on it - my results came back "elevated" (at 72, normal is 38 I was told). At that point, surgery was a must to remove the cyst and ovary, and I was referred to a gynocological oncologist (sp) surgeon, since they had to prepare for the worst.

I had the surgery 5 weeks after the cyst was found, and fortunately the cyst was benign. They biopsied it twice to make sure. Since the cyst was so large, I had a 2 inch incision through my abdomen, plus 2 laproscopic incisions. The surgery was a one day procedude - I arrived at the hospital at 11:30 and home around 5:00. I took 2 weeks off from work to recover, which was just the right length of time. I am 3 months post-op now and feeling fine.

My biggest problem was that I had crappy insurance which denied most of the claim, so I am on the hook for just about the entire bill - so I basically lost my retirement and all my savings right there. But at least I am OK so I can rebuild my life.

Just wanted to share my story (though my circumstances were a bit different and I am older in my mid 40's). Hope you have some good support from parents or friends - I would never had made it if it weren't for my parents rallying to help me. Keep us updated - sending you lots of postive thoughts!!
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Old 03-23-2013, 09:56 AM   #17
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Originally Posted by rewardsinlife View Post
Update 2: Well I had my appt. and I am scheduled for surgery on April 8th. After looking at the most recent ultrasound the surgeon stated that one of the bigger cysts had indeed ruptured which had caused me all that pain. The surgeon believes I have stage 4 endometriosis which will have to be treated aggressively. I will have to be on strong hormone pills to put me in Pre-menopause for the rest of my life. He also believes that the endometriosis has caused a bunch of scar tissue and inflammation and is actually pushing and invading all of my abdominal organs...so he will be doing an initial laparoscopy up by my ribs( anybody have the same?) so he can put the scope down and look from that direction. A lot will depend on what he sees when he gets in there, but he does believe that I will most likely lose that one ovary that's encompassed by the large cyst and it might end up as an abdominal incision if there is too much going on. Biopsy of course as well on that noncystic solid mass. I have mixed feelings..happy that it is going to be taken care of so soon....but also scared and nervous for it to be happening so soon as well..if that makes any sense. I am super glad I Went to Disneyland this week and am just hoping for a fast and healthy recovery.
I have had a Lap due to endometriosis. Not stage 4, but they removed scar tissue. It was a very easy recovery. I am sorry for everything you are going through. I can't imagine the pain. Hoping and praying for the best, and a smooth recovery.
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Old 03-23-2013, 10:37 AM   #18
DisneyMan 09
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I haven't studied these problems(because I'm a health professional who studies health). But I can offer "some good advice".

1st - If the Dr's find what you have(or they think you have), don't agree to treatment until researching again.

Even when the doctor's fix it, consider that the source of the problem is still there, and likely to create other problems.

Instead of using forums for my health messages, I've started making video's. I just made a video for you here: http://www.youtube.com/watch?v=4-eWgWUwzy8

edit: Just read your latest post. So do you not have Cancer?
I hear that endometriosis is treatable natually; no surgery needed, but I don't know about stage-4. You should Definitely do further research before agreeing to their aggressive procedures on your body.

Sept edit (case of Stage-3 brain Cancer remission with the diet I eat:http://www.youtube.com/watch?feature...pa00qAP98E#t=7
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Old 03-25-2013, 09:39 PM   #19
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Another update...but first thank yo all for your support and prayers.

Ok, someone messed up in scheduling my surgery. Instead of it being on the 8th of April , it is now on May 1st. I can't believe I have to sit here worrying for another month about these cysts and that tumor constantly growing in my stomach. Upset doesn't even quite capture the term. I cried for an hour straight after the call..I just want to be diagnosed...and that can't be done till I have surgery! Obviously, there is a reason why it has to be done later...I guess I should looks at the silver lining in the cloud and use the month to properly prepare...mentally, emotionally, and physically. just so tired of this whole process...anyway...thanks again for listening.
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Old 03-25-2013, 11:00 PM   #20
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Originally Posted by rewardsinlife View Post
Another update...but first thank yo all for your support and prayers.

Ok, someone messed up in scheduling my surgery. Instead of it being on the 8th of April , it is now on May 1st. I can't believe I have to sit here worrying for another month about these cysts and that tumor constantly growing in my stomach. Upset doesn't even quite capture the term. I cried for an hour straight after the call..I just want to be diagnosed...and that can't be done till I have surgery! Obviously, there is a reason why it has to be done later...I guess I should looks at the silver lining in the cloud and use the month to properly prepare...mentally, emotionally, and physically. just so tired of this whole process...anyway...thanks again for listening.
I'm sorry it got delayed... I got bumped 2 days before my brain surgery. I felt as you do...I think I had worked myself into it, and felt deflated... I then turned to thinking that there are reasons for everything...I know it isn't easy, but May will be here before you know it.
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Old 03-25-2013, 11:18 PM   #21
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Wow, so sorry to hear that news. I am sure it is so frustrating to you both physically and mentally since you were already prepared for it.

That happened to me too. They cancelled the surgery but as I kept getting sicker I called the office and the one day the nurse pract. heard how horribly I sounded and was breathing. (The one tumor was crushing my trachea). So she put the dr. on the phone to listen to me breathe. He told me to come in. He looked at me again and I ended up on his emergency surgery list which bumped me up about 2 weeks I think.

I definetly would call and report any more worsening symptoms. Also can you tell them to put you on the list for any cancellations. I know they need to book the or time, but if your pre op is cleared inthe specific time period you might have a chance of being bumped up.

Has this surgeon seen your latest er results etc? Did you have the ca 125 blood test?

I would be pretty mad at the surgeons surgery scheduler. I got to know them pretty well where I was with 7 operations in 1 year plus my sons too with the one same surgeon.

I know this is your third dr. so I guess you are willing to stick with him/her and wait it out?

Hang in there! Sending you thoughts and prayers. Wishing you all the best.
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Old 03-26-2013, 11:34 AM   #22
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Originally Posted by luvmarypoppins View Post
Wow, so sorry to hear that news. I am sure it is so frustrating to you both physically and mentally since you were already prepared for it.

That happened to me too. They cancelled the surgery but as I kept getting sicker I called the office and the one day the nurse pract. heard how horribly I sounded and was breathing. (The one tumor was crushing my trachea). So she put the dr. on the phone to listen to me breathe. He told me to come in. He looked at me again and I ended up on his emergency surgery list which bumped me up about 2 weeks I think.

I definetly would call and report any more worsening symptoms. Also can you tell them to put you on the list for any cancellations. I know they need to book the or time, but if your pre op is cleared inthe specific time period you might have a chance of being bumped up.

Has this surgeon seen your latest er results etc? Did you have the ca 125 blood test?

I would be pretty mad at the surgeons surgery scheduler. I got to know them pretty well where I was with 7 operations in 1 year plus my sons too with the one same surgeon.

I know this is your third dr. so I guess you are willing to stick with him/her and wait it out?

Hang in there! Sending you thoughts and prayers. Wishing you all the best.
Yeah this is the third one, and so far the only one who has agreed to do it since it is so severe...so I will have to stick with him!

I did get on the cancellation list and the scheduler told me I was the first one to be called if there is an earlier date. I guess since this is such a big teaching hospital that surgeries...even immediate ones are usually scheduled at a min. Of two months in advance. So, still being under at 2 month mark is pretty good I guess.

I do know that if I feel anywhere near what I did when one of the larger cysts had burst to go in right away to the hospital I will be having surgery and say I am on the surgery list and might need emergency surgery now. I hope that it doesn't come to that...I am so sick of the pain and feeling like I am pregnant just because of the severe swelling ...I look like i am 6months pregnant!

Oh well...here's to hoping I get stronger in the next month.
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Old 03-27-2013, 11:00 AM   #23
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Why did the previous 2 Dr.s not agree to do the surgery?

Quote:
someone messed up in scheduling my surgery.
That shows the competency of hospitals....and why surgery should be a last resort. Are you taking the natural, pro-active advice I gave? Put your trust in Mother-Nature before medicine.

I agree with another poster: Things usually happen for a reason. And if you aren't better by May 1, then surgery and recovery will go better with my advice.
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Disneyland - 1982, 83, 84, 85, 87

1994 - Annual Pass (37 visits) (went Vegan)
1999 - Annual Pass (32 visits)
Moved out of area
2009 - Anaheim or Bust...1st DL trip in 9 yrs........It's me who'll climb the mountain!

2011? - Nope, moving got in the way. Fortunately I moved back to S. Cal.

2013 - AP(feb)
2014 - Bought 4th AP 2 weeks before cheap AP's were suspended.

Last edited by DisneyMan 09; 09-13-2013 at 01:44 PM.
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Old 03-27-2013, 11:09 AM   #24
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Praying for strength for you and guidance for the doctor...that s/he is able to find and fix everything that needs to be taken care of.
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Old 03-30-2013, 08:12 PM   #25
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Originally Posted by rewardsinlife View Post
UPDATE: I haven't been able to do much of anything the last four days and had been in pain. I eventually broke down and went to urgent care yesterday...where I was promptly told to go to the ER. 7 hours later, they found one of my larger cysts had burst and I had a bunch of the fluid sitting in my pelvis and stomach causing me extreme pain. The ultrasound showed unfortunately, that another large solid tumor has grown since my last mri( which was only about a month ago) I'm sad...and just looking forward to my consult appt. at the big hospital on fri. Maybe if if feel better this week I will go to Disneyland...could use some happiness and extra pixie dust! Anyway...just wanted to update all...take care.
Quote:
Originally Posted by rewardsinlife View Post
Update 2: Well I had my appt. and I am scheduled for surgery on April 8th. After looking at the most recent ultrasound the surgeon stated that one of the bigger cysts had indeed ruptured which had caused me all that pain. The surgeon believes I have stage 4 endometriosis which will have to be treated aggressively. I will have to be on strong hormone pills to put me in Pre-menopause for the rest of my life. He also believes that the endometriosis has caused a bunch of scar tissue and inflammation and is actually pushing and invading all of my abdominal organs...so he will be doing an initial laparoscopy up by my ribs( anybody have the same?) so he can put the scope down and look from that direction. A lot will depend on what he sees when he gets in there, but he does believe that I will most likely lose that one ovary that's encompassed by the large cyst and it might end up as an abdominal incision if there is too much going on. Biopsy of course as well on that noncystic solid mass. I have mixed feelings..happy that it is going to be taken care of so soon....but also scared and nervous for it to be happening so soon as well..if that makes any sense. I am super glad I Went to Disneyland this week and am just hoping for a fast and healthy recovery.
Quote:
Originally Posted by rewardsinlife View Post
Another update...but first thank yo all for your support and prayers.

Ok, someone messed up in scheduling my surgery. Instead of it being on the 8th of April , it is now on May 1st. I can't believe I have to sit here worrying for another month about these cysts and that tumor constantly growing in my stomach. Upset doesn't even quite capture the term. I cried for an hour straight after the call..I just want to be diagnosed...and that can't be done till I have surgery! Obviously, there is a reason why it has to be done later...I guess I should looks at the silver lining in the cloud and use the month to properly prepare...mentally, emotionally, and physically. just so tired of this whole process...anyway...thanks again for listening.
Quote:
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Praying for strength for you and guidance for the doctor...that s/he is able to find and fix everything that needs to be taken care of.
Quoting because I had ovarian cysts that ruptured for years. Feeling fine and then doubled over in intense pain. Eventually, my doctor did a lap and removed 1 cup of fluid from behind my uterus that was the result of years of ruptured cysts. I did fine for a while but ended up having to have a hysterectomy. My husband and I adopted our daughter after that.
Hugs and my prayers are with you.
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Old 04-05-2013, 01:18 AM   #26
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I have endometriosis, and was diagnosed after an initial lap stated I didn't have endometriosis. I was struggling for a few years after the initial lap, so my reproductive endocrinologist encouraged me to undergo a second lap because he was positive he would find the endo. Well, 4 hours later, major surgery to remove mounds and mounds of adhesions from my bowels, peritoneal cavity, and on the inside of my girlie goods, I was diagnosed with stage 3. The doctor said it was one of the largest surgeries he had done laparoscopically and was afraid at one point he was going to have to open me up. He had only ever had to do that one other time. He spend all those hours excising adhesions, instead of burning them because the adhesion rate is less with cutting. He left some really big holes inside to avoid adhesion buildup (1x2 and 2x3), and lots of smaller holes. The only place he didn't find it were areas it generally grows, like my uterus, tubes, and ovaries. I didn't do lupron, as it does a horrible number on bone density and doesn't show any significant benefits, more negatives. The advice I got was either conception immediately, or birth control. I ended up conceiving a year later, so had some recurrence of adhesions.

My old doctor stopped performing surgery, so he gave me his top three in the country, and two are local (the other is in OR). I went back in a few years ago, and it had invaded my bladder, bowels (inside my appendix, so it was removed), uterus, tubes, ovaries, and towards my liver. I still refused birth control (horrible side effects for me), this doctor refuses to use Lupron (non interrupted birth control with 3 periods per year), and a hysterectomy has not been recommended because of the hormones. I have low bone density, so they want me to keep those ovaries as long as possible.

Very little pain since surgery, and I've had a total of 4. I can always tell it's time, and then I go back and get it dealt with. Surgery was a relief!

Good luck!
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Old 04-05-2013, 11:21 AM   #27
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I have endometriosis as well. My issues seems to be more about ovarian cysts. 5 years ago I had a 7cm endometrioma removed. Two weeks ago I had an 8cm functional cyst removed from the same ovary, plus my appendix and some "minor" pockets of endo.

I finally started continuous birth control pills to help stop these cysts. I'm sure I have had a couple rupture because I've had episodes over the years of excruciating pain. It's not a fun thing to deal with.
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Old 04-05-2013, 11:51 AM   #28
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I just wanted to thank you all for your support and sharing your stories! It is definitely helping me to prepare for surgery and understand a little bit better what is going on with my body...and that I am not alone!

@DisneyMan 09 I have been basically doing everything the 'natural' way for all these years and it has jut gotten worse to this point...so I am definitely a candidate for this surgery and medication. Thanks though for mentioning the options.

The dr. Started me on norethridone 5mg. To help calm things down. Unfortunately, I don't think this medication is for me. Side effects are absolutely horrible, and now instead of being in excruciating pain about 2 weeks every month I am in moderate pain 24/7. Some might prefer this but at least I had days where I felt almost normal! Not so much anymore. Ugh. Not to mention the mood swings! I feel like I am The battle between good and evil in Fantasmic! :
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Old 04-14-2013, 02:08 PM   #29
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I just wanted to thank you all for your support and sharing your stories! It is definitely helping me to prepare for surgery and understand a little bit better what is going on with my body...and that I am not alone!
Hang in there believe it or not the worst is likely over... at least now you know what you are dealing with and what needs to done overall... even if the extent of all the "details" are not figured out yet. I am a scientific researcher in my day job, because I was curious about your diagnosis (I also teach Anatomy and Physiology), I did a quick search and came across this nice bit of info from John's Hopkins:

http://www.hopkinsmedicine.org/healt...sis_85,P00573/

There is a lot of great info out there as well as some support groups of folks who are dealing with the same situation, so you are not alone. I wish you the best of luck and remember the light at the end of the tunnel is there and will get brighter soon.
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Old 04-15-2013, 02:01 AM   #30
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Just read this thread & rewardsinlife I hope your surgery will be moved up & you will feel much better afterward. All my best to you.
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