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Old 03-06-2013, 10:19 PM   #1
rewardsinlife
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Lost and confused..needing some pixie dust to guide my way

Well, I will try to make this as short as possible. I have been battling an unknown chronic illness for 3.5 years which has caused me to lose muscle mass, become weak and fatigued when even walking a short distance, balance problems, digestive issues, muscle pain, and a progressive foot drop that has left me with a limp. Now, I had about given up all hope on figuring out what it was after seeing multiple neurologists, and been misdiagnosed with ALS, hungintons disease, Gillian barre oh and my favorite...you are young and a woman " it must be all in your head!"

Anyway...out of desperation I went to a gynocologist and complained about the severe pain I was having in addition to all these other symptoms..ESP. Around my time of the month. She ordered an ultrasound and voila. There is the answer. It took the radiologist more than half an hr. to map and copy all the cysts and masses. A week later had MRI for ' bigger picture ' which found a huge complex mass and cyst combos encompassing my entire reproductive system..plus all the other little masses and cysts all over in my stomach and pelvic area. Been referred to a big teaching hospital for abdominal surgery and told there was a likelihood it was ovarian cancer along with severe endometriosis. Pre -op is at the end of this month.

Why am I here? I Am in pain almost 24/7. I have been rapidly losing weight. I am bloated ..and can't even wear regular jeans anymore because of being so swollen. I have been told conflicting things...you must have laprootomy( big incision n stomach..and possibly everything removed) and then told. Only need laparoscopy and nothing should be removed and if it is cancer just have it get shrunk with chemo. What?! My family has a huge history of cancer and this doesn't sound like any of their treatments! I think I would want anything suspect out right? Keep in mind...I am 25...and though I would like to have kids...living obviously is more important at this point and I don't know if I would want to pass on some of these cancer genes anyway. Adoption is always available if and when!

Anyway..if anyone has any thoughts or clarification..I just kind of need to know what I should sign away before surgery and what I should try to hold on to...if that makes sense. Thank you in advance!
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Old 03-07-2013, 08:28 AM   #2
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I'm not a medical professional nor pretend to be one.

You need to write down every single question you have including the ones listed here and take them to your doctor before your pre-op. Have a long discussion and make sure you understand every single thing about the medical issues and the treatment.

If you aren't satisified with the conversation, either have it again or go find another opinion. I am have some of the same conversation with my own doctor due to severe cysts and masses and history of female cancers. At 34 I'm not quite ready for a hysterectomy but I'd rather live than worry about cancer and always in pain. I saw my granny pass on from ovarian cancer and it was not pretty by any means and don't want that for my own family.

Now I imagine that the problem with the doctor telling you different possibilities is that the doctors won't know until they are in the procedure. It sounds like they are trying to come up with contingency plans and again you need to discuss and be comfortable with all contingency plans. If you have ovarian cancer, discuss taking both ovaries or just one and the tubes and what are the chances of cancer spreading from the ovaries to the uterus. Ask all the questions you can. Take a family member or close friend with you and have them write down the answers for further discussion.

Do not let medical people just bully you around and say this, that and the other has to happen if you aren't comfortable with everything. This is your body and your life you have a right to know and understand and have a say so in what happens.

I will pray for you and your health and your upcoming procedure goes smoothly.
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Old 03-07-2013, 10:45 PM   #3
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Chronic illness/pain is such a difficult road. I can fully understand your fears, and I know it is easy for me to say this, but 'try' and take one step at a time.

I think the Lap is a good way to start. I had this done, and it was very simple. I was also prepared for anything to happen such as yourself, if the need arose.. As I said, it is NOT easy, but really do try to take it one step at a time. You are young, and can worry yourself sicker thinking of the worst possible situation.

Having been through a rather horrendous past few years, I would recommend a second or third opinion prior to anything radical. My first brain surgery I had no say, it was life or death. After I recovered I realized that I needed to seek other opinions. Answers, concerns, alternatives.. I stopped with the third opinion where I felt validated, and like an equal to the Doctor.


Please let us know how you are doing.
Is it possible for you to have copies of your tests for yourself ( I believe you have the rights), and get a second opinion, if not a third.

lovemygoofy gave great advice in my opinion..

Hugs and prayers. Please let us know how you are doing.
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Old 03-07-2013, 11:48 PM   #4
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you sure have gone through a lot. I know how frustrating it is when drs. dont have the answers and you are feeling so sick.

Tina gave you lots of good advice.

I too was misdiagnosed and I do have some of your symptoms. It was like the dr. couldnt put any of the pieces together.

Tired upon exertion - he finally did a blood test and found out I had severe anemia and I had to have 3 blood transfusions.

Stomach issues and weight loss - had to have stomach motility tests and they also found out I had no vit d in my body

severe weight loss - had that too. He said oh you a e doing great losing weight since I was ery overweight to begin with. Told him I wasnt trying to.

Muscle pain and itching - could be severe b12 and vit d deficiency.

You have already had the mri and ultrasound but have they considered a PET/CT scan. That is another test for a def. cancer dx if that is what they are thinking as a possibility.

Forget the jeans and get some yoga pants for now.Be comfy.

You shouldnt have to suffer in pain before the surgery. Can they give you anything to help with that.

Have you had complete lab workups lately?

Before you sign on the dotted surgical line I would def. ask the surgeon what his A and B plan was. I also admit I did my own little internet research and found out a scenario which apparently the surgeon didnt want to tell me, but when I questioned him, he answered, oh I see you thought of everything. I said, yes I did.

Also just know things happen, Sometimes the surgeon gets in there and things are not what they expected or a whole lot worse which happened with me. Even with all the testing it didnt show how bad it was etc.

So ask what do you plan to do, if things are not what you expect what do you plan to do (surgical Plan B etc.) Recovery etc.

Wishing you all the best. Hang in there.
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Old 03-08-2013, 10:12 AM   #5
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Oh wow. I hope answers are found soon. I agree with a previous poster. You have every right to every single medical record you have....... Labs, radiology reports, radiology disks with pics, doctor notes, everything. You will have to sign a release to get them and some offices charge for you to get them for personal use. But, at least you could get an idea of why they were thinking all the different diagnoses.

Best of luck and many prayers!
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Old 03-08-2013, 05:44 PM   #6
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Thank you all for your advice and comforting words. I do have most records, and am trying to get the latest ones here as soon as possible.

March 22nd will actually be my third opinion. One said laparoscopy, other said abdominal with everything out so. Guess the third dr. Will be the tie breaker. I will definitely ask about plan a,b, c.....z. Haha before signing away anything.

I asked primary dr. For something for pain and was given something without hesitation. He actually laughed and said he didn't know how I was dealing with something that was that painful in the first place without some medication! I told him Disney helped me get through it..

I will keep you all updated. Thanks again!
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Old 04-15-2013, 02:01 AM   #7
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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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Old 04-18-2013, 04:34 PM   #8
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13 days and counting till my surgery!

Had another cyst burst Tue. Luckily it was a smaller one so I wasn't in as horrific pain as the previous one that was much larger. Still dealing with horrific bloating and pain though.

Those who have been so nice to share your stories, would you mind telling me ways of how to deal with the pain after the surgery? I went to a pain clinic today that was supposed to offer me pain management therapy but all they wanted to do was give me epidural pain meds....uh ...no thank you. I have found heating pad works. I will be taking some pain meds, but want to find some other ways to deal with it too. ( my body reacts very strongly to meds of any kind..it's a genetic thing. In a previous surgery I had, they gave me the child's dose of anesthesia and I was out for longer than they expected.) So I don't want to stay on whatever opiate they are going to give me for too long because I know I will be knocked out from it. Any tips?
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Old 04-22-2013, 07:17 PM   #9
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Originally Posted by rewardsinlife View Post
13 days and counting till my surgery!

Had another cyst burst Tue. Luckily it was a smaller one so I wasn't in as horrific pain as the previous one that was much larger. Still dealing with horrific bloating and pain though.

Those who have been so nice to share your stories, would you mind telling me ways of how to deal with the pain after the surgery? I went to a pain clinic today that was supposed to offer me pain management therapy but all they wanted to do was give me epidural pain meds....uh ...no thank you. I have found heating pad works. I will be taking some pain meds, but want to find some other ways to deal with it too. ( my body reacts very strongly to meds of any kind..it's a genetic thing. In a previous surgery I had, they gave me the child's dose of anesthesia and I was out for longer than they expected.) So I don't want to stay on whatever opiate they are going to give me for too long because I know I will be knocked out from it. Any tips?
Wow!! It's is giving me flashbacks... I just read this thread start to hear tonight. I have been through this, and it has been a long road. I had infertility issues and went through treatment for five plus years, resulting in 2 miscarriages. We then went on to adopt our two wonderful kids from Russia. When they were little, I started having the severe pain and other lovely symptoms. I basically went through several years of different treatments etc culminating in a total hysterectomy. That was in 2007, six weeks prior to starting nursing school at age 39!!!

Two weeks ago, I started having the same exact lower abdominal/pelvic pain. Although endo can continue after a hyst, it is very rare. My Gyn thinks this is gi related, and my gi thinks it's Gyn related. the ultrasound was inconclusive and I am having a ct tomorrow. The pain has been awful today...all day. I cannot believe this is happening again...

To answer your question about pain control, this will make you laugh. Prior to surgery, I used to use my Sheltie as a heating pad. Morgan was such a good sport about it... He was just heavy enough, and he was furry and warm!!!

Endo is very often misdiagnosed, sadly! I also got the old pat on the head from a male surgeon during a consult... When I had they hysterectomy, they found stage 4, with endo pulling my colon and adhering it to the back of my uterus. UGH!!! That explained aloof the lovely bloating and gi symptoms... I thought for sure I had cancer going into that surgery.

Sorry for rambling... Hopefully, you will find your answers soon. I wish you the best of luck!!!
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Old 04-22-2013, 07:30 PM   #10
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Quote:
Originally Posted by rewardsinlife View Post
13 days and counting till my surgery!

Had another cyst burst Tue. Luckily it was a smaller one so I wasn't in as horrific pain as the previous one that was much larger. Still dealing with horrific bloating and pain though.

Those who have been so nice to share your stories, would you mind telling me ways of how to deal with the pain after the surgery? I went to a pain clinic today that was supposed to offer me pain management therapy but all they wanted to do was give me epidural pain meds....uh ...no thank you. I have found heating pad works. I will be taking some pain meds, but want to find some other ways to deal with it too. ( my body reacts very strongly to meds of any kind..it's a genetic thing. In a previous surgery I had, they gave me the child's dose of anesthesia and I was out for longer than they expected.) So I don't want to stay on whatever opiate they are going to give me for too long because I know I will be knocked out from it. Any tips?
I was on a morphine pump but only used it for the first day. After that I didn't take anything. It hurt but at least I wasn't out of it. This allowed me to read or watch movies which helped to take my mind off of the pain. I recuperated really quickly. Walk as soon as they say it's ok. Baby steps at first but add on as they permit. Lying around too long will make recovery last longer. My mom and women of her age group took weeks to feel better because they were encouraged to lay about and not do much. I'm not saying to push too hard either. Follow your body's lead. Hugs and good luck!
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Old 04-23-2013, 04:53 AM   #11
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I was on a morphine pump but only used it for the first day. After that I didn't take anything. It hurt but at least I wasn't out of it. This allowed me to read or watch movies which helped to take my mind off of the pain. I recuperated really quickly. Walk as soon as they say it's ok. Baby steps at first but add on as they permit. Lying around too long will make recovery last longer. My mom and women of her age group took weeks to feel better because they were encouraged to lay about and not do much. I'm not saying to push too hard either. Follow your body's lead. Hugs and good luck!
Awesome advice!!! I am a nurse, and you are absolutely right. I had my surgery later in the day due to emergencies bumping me back. I was up and walking first thing in the morning. I also had the pump for the first maybe 12-18 hours. It really was to be able to sleep that first night. It was a blessing, but then I was done with it as I also don't care to feel that way. The pain mess can make you very constipated, so getting up to walk is a way to counteract that. It also helps to keep your lungs clear. Remember to hold a pillow against your abdomen whenever you do anything...cough, laugh, shift your position, etc. it helps with the pain.

Don't try to be a tough guy in the first two days...ask for mess for pain if you need them. The best way to fight pain is to stay ahead of it! Don't wait until the pain is awful. For the first few days, take the pain mess as prescribed, generally every 4-6 hours. O can start to cut back after that. Also take an OTC med for your bowels, such as a stool softener or fiber supplement. This helps to keep them working while you are taking the pain meds...
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Old 04-24-2013, 05:01 PM   #12
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All such great advice! Had Pre-op appt.s yesterday and it took 5 hrs! They also put a hospital bracelet on me for my bloodwork that I have to keep on till surgery. Luckily they said I could put it on my ankle so that is where it is. It definitely bugs but I would rather be able to cover it up with pants then have all my students ask me..what's on your arm? Is that your birthday? What are all those numbers?

Was supposed to go in today for EKG but woke up completely exhausted and in pain from yesterday. Had to cancel so hopefully I will be able to reschedule before surgery. Luckily, my gp doctor is also the cardiologist specialist so it shouldn't be that difficult I am hoping.

Found out to that I have to do a lovely um 'cleanse' it just kind of amazes me how much they don't tell you of the stuff you have to expect until it happens.oh well.

Here's to hoping I don't get too nervous about this surgery. Now I just wait
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Old 04-18-2013, 09:43 PM   #13
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I don't like taking strong pain meds like Vicodin or Percocet. They make me feel funny.

After my surgery, I took 600mg of ibuprofen every 6 hours. Sometimes I needed Tylenol at the 4 hour mark.

Honestly the worst pain was from the stupid co2 gas that they inflate your tummy with. It goes to your diaphragm and your right shoulder and it was almost unbearable at times. Pain meds didn't seem to help, but ice packs and heat did, and a quick shoulder massage. I just tried to tough it out and after a few days it went away.

Good luck to you!
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Old 04-18-2013, 11:58 PM   #14
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I agree about the Gas.. I was THANKFULLY advised to walk it off, otherwise it gets trapped, and this happened to my friend, and she thought she was having a heartache.. I honestly recovered really well, took it slow, and after 2 days was pretty good.

Sorry another burst.. You poor thing.
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Old 05-03-2013, 03:27 PM   #15
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Wow!!!! That sounds very familiar. I had stage 3 or 4 endo. The surgery was long and intricate. I had great success with Lupron, prior to the surgery. I did 6 months and then had 18 months of living pain free. After that, when the pain cam back, I decided to have a total hysterectomy. At the time I was 39 and starting nursing school. We had adopted two kids and were done on that front... I wish you luck with your recovery!!!
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