Lost and confused..needing some pixie dust to guide my way

[rewardsinlife]

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!

 

[lovemygoofy]

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.

 

[mommasita]

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.

 

[luvmarypoppins]

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.

 

[MomiTo2SwtGuys]

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!

 

[rewardsinlife]

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!

 

[jkfandel]

Hi ~ I have just been diagnosed with ovarian cancer. Large pelvic mass thought to be recurring endometriosis was removed in January. Doctor was sure there was not any cancer so he put my other ovary back. Pathology came back with cancer so ovary must go etc. Second surgery was last week to remove ovary, biopsy other organs and stage. Still waiting for the results. Glad to have Disney in October with my daughter to look forward to. Wish you the best. I will be checking in. Healing thoughts to you.

 

[mommasita]

Hi ~ I have just been diagnosed with ovarian cancer. Large pelvic mass thought to be recurring endometriosis was removed in January. Doctor was sure there was not any cancer so he put my other ovary back. Pathology came back with cancer so ovary must go etc. Second surgery was last week to remove ovary, biopsy other organs and stage. Still waiting for the results. Glad to have Disney in October with my daughter to look forward to. Wish you the best. I will be checking in. Healing thoughts to you.

to you as well...

 

[rewardsinlife]

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.

 

[klewallen]

I hope you get good news sounds like you need a good competent Dr and hospital, which hopefully the big Hospital will have for you. I didn't have exactely what you have but I was having lots of pain and very very bad periods but i was kinda in denial bc my regular OBgyn just kept brusing everything off i would say. i said i can't wear tampons anymore, i am having bathroom urgency . my hip hurt so bad, finally i went to another obgyn for a 2nd opioion and she said you have cysts and need a bladder tack up. since i was heavy and had three misierable deiveries i said can you cut some of this extra skin off, and she said wait a minute and came back in the room and said insurance will pay for it and my partner that does cancer surgery is going to help take the extra skin off bc the bladder tac up surgery i want to do won't work id we don't take the extra skin off. When I came to from the surgery I had 70 stables they found a cyst the size of a baseball on my uterus, staph infection scar tissue from two staph infections i had from my last two c-section where i got sick with staph, a hernia and my bladder tack up. let me tell you it took weeks to get over that surgery but boy did i feel so much better once it was all done. sometimes they just can't tell until they get in there. I remember the day with my parents everything was a exploratory surgery but they don't do that to much anymore. i think you will feel so much better when they get those cysts out of you. you could try cancer center of america for s second opinion they will pay for you and a companion to fly there get a check up, the meals are free which are all healthy made by chefs and rooms are discounted for patients very reasonable at 4 star hotels, and a limo picks you up at the airport which is all paid for.something to consider and they are quick you get answers and diagnosis in super quick time before you leave to go home you will have a diagnoses, plan of action...Thinking of you...:debwalkixiedust:

 

[mommasita]

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.

Poor thing. Glad you went in...My friend had one burst last month, and was in extreme agony.... Thinking of you for this week...

 

[o2cre8]

Hi,

I almost never reply, but felt I should here. I was listening to a radio news program yesterday and she mentioned how with things like this it is very important that you see someone who specializes in this area. She herself is a gynocological oncologyst. If you find someone who specializes in this area you will hopefully know and get what you need. Good luck!

 

[rewardsinlife]

I have an AP, so I decided to go to Disneyland today as a last hoorah before appt. on fri and surgery. Only spent about 3 hrs. At the park, because still not feeling best and just real tired...but it was the best 3 hrs. I have had in a while Disneyland works so many miracles. wonderful way to get me motivated for the road ahead!

 

[mommasita]

I have an AP, so I decided to go to Disneyland today as a last hoorah before appt. on fri and surgery. Only spent about 3 hrs. At the park, because still not feeling best and just real tired...but it was the best 3 hrs. I have had in a while Disneyland works so many miracles. wonderful way to get me motivated for the road ahead!

Good thoughts for Friday.

 

[rewardsinlife]

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.

 

[HugsForEeyore]

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!!

 

[mommasita]

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.

 

[DisneyMan 09]

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=player_detailpage&v=Ipa00qAP98E#t=7

 

[rewardsinlife]

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.

 

[mommasita]

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.