What's it gonna take?

This time...I've been bleeding for over a month & 1/2 & in massive amounts of pain.  And I don't have a doctor so all I could do was go to the emergency room.  I had one quack tell me that due to HMO's being what they are today, I'm going to have to wait 'til I'm bleeding to death then go to the ER & hope for an emergency hysterectomy.  How do you know when you're bleeding to death?

Over a month & 1/2 & you think you're bleeding to death.  But nope...I'm not.  My blood count's way up here where it's supposed to be.  Well that's all fine & good but I've still been bleeding for over a month & 1/2 & in massive amounts of pain.  Nobody...not even the biggest wench of all time...nobody should have to "live" like this.

Oh but I've been "living" like this since 1996/1997.  I was married when this started.  This is one of the many things that caused my divorce.  At first I thought this was like an STD & my hubby was cheating...but this is no STD.  This is hell on earth.  This makes you question what you did.  And I don't recall anything in this lifetime bad enough to deserve this so it must've been in a past lifetime.

Even with insurance I still had to see a nurse practitioner.  But this nurse practitioner cared more & tried harder then any doctor I've ever had.  She put me on birth control & said in 6 mo's I'd be getting scoped for ovarian cysts & endo.  But before the time was up the doctor she worked for got prego, had her baby then retired to raise it.  My nurse practitioner switched doctors & the new doctor didn't take my insurance so I lost my nurse practitioner.

And new doctors don't pick up where the old ones left off.  Birth control didn't work (I should've gotten scope & diagnosis anyway) but new doctor wants to try them again anyway & have me come back in 6 mo's.

In the meantime this probable endo has become acid reflux, IBS, anorexia & more.  I've already had an upper & lower GI.  I've already been diagnosed.  And I've been left to rot with it all.  Because next thing ya know I was fired & lost my insurance.  I could get other jobs but not keep them long enough for insurance to kick in...if they offered it.

I've spent the last 6 years fighting Gov't/State help agencies & orgs for Medicaid then Medicare.  Especially the Medicaid was given to me then taken away then given to me then taken away.  OK so I get it...see a quack & they always want to try the pill & have me come back in 6 mo's but then I lose it therefore can't try the pill plus can't come back to tell them it's done no good.  It's done me no good this time or any of the other times I've tried it.  So I'm done with the pill.

Being on the rag for 2 weeks every single month is bad enough but being on the rag all month long should be against the law.  If you go to a doctor's office or an ER & say "I've been bleeding for a month" & they let you walk out of there still bleeding somebody should go to jail.  That's inhumane.

But evidently this is what it's going to take cuz it's happened to me before & now here we go again.  Last time I went to an ER 4 times in one week.  Of course they had to do an exam...then gave me something for pain & sent me on my way.  They kept forwarding me on to quacks who wouldn't see me even if I had Medicaid & I didn't have Medicaid.  

But I got MAP (medical assistance program).  All it entitled me to was some of the dumbest people on the planet.  I wouldn't have gotten a biopsy if my regular doctor hadn't insisted on it.  I refused birth control pills so I got hormones instead.  They claimed the hormones helped the ovarian cysts it took 'em a decade to diagnose me with.  They might be but they're not helping the bleeding or the pain.  I said if they need proof I have endo then scope me if they must but then I want a hysterectomy.  Instead one of the dumbest people on the planet talked about getting me another upper & lower GI to see if bleeding for over a month & pain is related to a stomach virus...like I don't know my own body.

Plus again...I've already had one of those which is how I was diagnosed with the acid reflux, IBS, etc.  He tried to tell me scopes were risky.  So are upper & lower GI's.  

I just don't get it.  I sit here & read about some of you gal's being scoped after the first visit.  Or you go in & order a hysterectomy & get one just like that.  Thanks to these forums I've heard of Lepron is it?  I've heard of scraping & burning.  I'm reading where some are getting only one tube out then eventually the other then eventually the uterus.  I imagine you are the ones just starting out &/or married &/or wanting to have a baby.

Well I'm not.  I've been married almost 3 out of my 41 years.  And due to years of abuse...by family, help agencies & orgs & licensed pros...years with health problems (first my kid's then my own)...& 3 rapes I'll never be married again.  Also for these same reasons I'd never drag another child into this.  There's no reason I can't have a hysterectomy.

Except corruption.  How much money do they make per office visit?  Then all these tests...then the ER...then the hospital...then the pharmaceutical co.  I imagine the pharmaceutical co makes a killing considering we evidently diagnose people via meds.  "Try this one & if it works then you've got this...if it don't work...I dunno...we'll have to try something else".  Ahhh the life of a guinea pig...weeeee.

So what's it gonna take?  Who do we write?  Cuz I've already written every level of Gov't official we got...plus the news...to no avail.  People's medical records should carry w/ them from one doctor to the next.  If they insist on putting women through so many steps there should be time limits.  Try your pill ONCE...try your hormones ONCE...try this special pill (Lepron???) ONCE.

Has burning or scraping ever worked for anybody?  Also how many of you tried burning or scraping multiple times?  Then what...3 more surgeries to get rid of 2 fallopian tubes & a uterus?  This is freaking ridiculous.  No woman has time to dedicate to decades of this ****...not quite alive but not quite dead either.  There should be a time limit.  And we older folks should be considered past the time limit & go straight for the hysterectomy.  

This stuff does come in stages...like cancer.  How many years does it take to get to the 5th stage?  Once you're @ the 5th stage...would a hysterectomy help?  If not then what?  See what I mean?

Another thing we need to change is how things go down @ the ER.  If I go to an ER I'm not there for an exam & such.  If I wanted an exam & such I'd go to the doctor of my choosing & when I choose which wouldn't be when I'm "sick".  I go to an ER because even if I'm not I feel like I'm dying.  I know after several years experience an exam will tell you absolutely nothing therefore won't help me at all.  I'm in a bad way & a lot of pain & shouldn't be put through useless exams for nothing.  So this "policy & procedure" needs to change.

Who do we write to plus who do we go to?  I just went to the ER & was sent home with pain pills.  Forwarded on to a doctor when they don't know if these people will see me or not.  And even if they will...won't they be just another "try the pill"?  I know hospitals have social workers or patient advocates or something like that...what do they do?  The next time I go & they want to send me home do I scream for one of them?  

Thanks for any leads. :)        

[jamies1028]

You haven't had a laparoscopy? That is normally the first step in diagnosing and sometimes treating the endo. A lot of women get a great deal of relief from it. Since I've had mine I'd say my symptoms have improved some. Without insurance, that can be difficult but I would try to find a gynecologist that will accept your insurance and hopefully be proactive when it comes to treating your endo. Maybe keep a pain diary and write down everything else they have used tried and treat it. I've found that you have to be your own health advocate.

Unfortunately, a hysterectomy often comes with its own set of problems and doesn't always guarantee the endo won't return so I would make sure that there is no other to treat it before you jump to that option.  Also, the laparoscopy is a pretty minor procedure depending on the extent. I was back on my feet in just a few days. Unfortunately, this disease takes a toll on you and tends to get worse. I hope you find the answer you're looking for!

[Cherokee_Princess]

No I haven't had a lap or scope.  All I can meet are doctors who insist on diagnosing me via trying pills.

Sorry for the book.  Let me shorten it up here.  Who do we write?

- People's medical records should carry w/ them from one doctor to the next.  

- If they insist on putting women through so many steps there should be time limits.

- Another thing we need to change is how things go down @ the ER.  If I go to an ER I'm not there for an exam & such.  If I wanted an exam & such I'd go to the doctor of my choosing & when I choose which wouldn't be when I'm "sick".  I go to an ER because even if I'm not I feel like I'm dying.  I know after several years experience an exam will tell you absolutely nothing therefore won't help me at all.  I'm in a bad way & a lot of pain & shouldn't be put through useless exams for nothing.  So this "policy & procedure" needs to change.

Who do we write?

[Diva2317]

You can write your governor about this. This is one of the many reasons that Obama is trying to get a universal health care plan, so people like you can get the healthcare they need.

I hate to say this, but you might have to just pay out of your pocket for a lap and scope. They can set up a payment plan for you. It'll probably be hard to deal with, but your health is more important. Also, is there anyone close to you who would be willing to help you out?

[Diva2317]

Also, I know that the pill isn't going to help me, so I am just going to demand a lap as soon as I get my ultrasound. Next time you see a doctor just tell them that is what you want. They can't so no, and it they do, go somewhere else. Be stubborn

[Cherokee_Princess]

I tried the Gov...& the senator & the congressman.  I've even written a letter to the Pres...Mr. Obama.  All I can say about his great plan is please don't get your hopes up.  

This is a bit off topic but ya brought it up so now I gotta say something about it.  In a way we do have universal care.  We have Medicaid for children, prego women & young moms.  We have Medicare for disabled people & the elderly.  But both are about useless.  You can't go anywhere/do whatever you want.  You go to whatever hospitals or doctors they tell you to go to.  You don't get 1/2 the tests you need.  You also don't get the proper meds you need.  And the older you get the less they help you.

I think if they ever do get their plan rolling it'll be the same way.  Men & women w/ no kids or grown kids will get Medicaid or Medicare too.  But it's not that great so what are you really getting?  Plus in order for all groups to have it at least one group will have to do without.  I'm already hearing about our elders being refused things like hip replacements & forced into death counseling instead.

I dunno about that.  But I do know about this.  My lil bro's mom-in-law had either bronchitis or pneumonia & they kept taking her to the ER but the ER kept sending her home.  When it got real bad they called an ambulance but I believe the ambulance refused to take her.  She was on disability but I'm not sure if SSI (Medicaid) or SSDI (Medicare).  Regardless...she drowned on herself & died right in front of a couple of grandkids.  And that was right here in the #1 country in the world.

Back on topic...I'm on disability & get Medicare.  So I shouldn't have to pay for anything out of pocket.  And no...there is no one to help me out.  Some died much like my bro's mom-in-law...even though most had insurance.  The rest were disowned.  But I'll talk about that up in abuse.

I hope everybody writes somebody.  To get a ranting/raving letter here & there...it tends to make the receiver think the author crazy.  But if everybody wrote somebody...they can't think we're all crazy. ;-)