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

[luvmarypoppins]

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.

 

[rewardsinlife]

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.

 

[DisneyMan 09]

Why did the previous 2 Dr.s not agree to do the surgery?

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.

 

[Piper]

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.

 

[Robbi]

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.

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.

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.

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.

 

[Christen99]

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!

 

[frostedpink]

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.

 

[rewardsinlife]

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! :

 

[Suger Mag]

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/heal...gynecological_health/endometriosis_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.

 

[peoplemover]

Just read this thread & rewardsinlife I hope your surgery will be moved up & you will feel much better afterward. All my best to you.

 

[rewardsinlife]

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?

 

[frostedpink]

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!

 

[mommasita]

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.

 

[omalley1118]

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!!!

 

[Robbi]

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!

 

[omalley1118]

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...

 

[rewardsinlife]

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

 

[omalley1118]

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

I'm so sorry you're going through all of this!!! I know it's a pain... I remember the cleanse... I had to drink the yucky CT contrast yesterday. It made me want to go find every pt from the ER that I made drink it and personally apologize...

 

[rewardsinlife]

Time is up! Tomorrow is the big day

Looking forward to feeling like this again soon!

Wish me luck..and pixie dust!

 

[omalley1118]

Time is up! Tomorrow is the big day

Looking forward to feeling like this again soon!

Wish me luck..and pixie dust!

Wishing you the very best!!! I know the next few days will be tough, but you will pull through!!! Please let us know how you are doing when you can...