Huge Medical Issue Strikes Again...

[la tortuga]

Mystery Solved Update! (http://mysticwicks.com/showpost.php?p=3991839&postcount=30)








So, when I joined MW back in April, 2004, I had a problem. You can read about it here (http://mysticwicks.com/showthread.php?t=49971), but I'll just go over it really quickly, if you don't want to see the wee bairn turtle being sad on the intarwebz.

Back then I thought it was due to hormonal imbalances, but apparently due to subsequent visits with my doctor, I now know that this is not the case. For some as of yet unexplained reason, I cannot stop my periods. This has been going on since January 2001, when I was eleven years old. I became aenemic, very easily sick, and essentially began to lose faith in my life or what it meant entirely. I felt like I was dying and, to a certain degree, that was true. I can't verify the exact severity of what was going on now, as I was twelve at the time of treatment and thus very emotional. They told me that if I took birth control pills, it would likely unkink whatever ghost was in the system. The first dosage I took was not very effective, taking three or four pills a day in the beginning but never really getting down to juts one. Second was not so bad, but it eventually stopped working, too. Seasonale, which I began when I was thirteen, was pretty nice. I took it up until two years ago, when I supposedly regulated (kind of).

Well, it's back... and with a vengeance. I thought I had grown out of it and that I'd be okay, that maybe at some point I could have kids or something normal instead of the constant struggle to tackle my hormones and keep them in check. This is something that has haunted me this entire time, it's why I nearly attempted suicide when I was thirteen, it's why I have done so many things in my life... and I'm afraid of it, if you can imagine. I know it sounds silly, in a way, but there it is. I'm terrified.

Just when things in my life were going really well... I've done some research, most likely cause is endometriosis... and I've had several sonograms and tests done, never could find any evidence that that is the case. In some ways I'm hoping that's it, since it would be discovered as the culprit and taken care of... but then there's my worst fear raising its ugly head with a very low probability of ever having kids, if it is.

I have an appointment on the 14th of July, but I'm just so frightened of what the doctor could say is wrong with me, or that he may not be able to find anything at all... I honestly don't think I could say which would make me cry harder.

... and my mother, sister, brother, and myself were dropped from the insurance coverage last night because we didn't get them copies of birth certificates and marriage licenses in time for them to validate, even though we've been with that company for ten years... I can't cancel the appointment, it'll take over a month to reschedule it, but I don't want to go without health insurance... and the prescription for the birth control pills that work that got called in today, I can't go pick up because I'm no longer covered. :(

[Glowy]

how can they just drop you.. cant u get them the paperwork and be back in? that is such BS- I hate Insurance Co.

I hope the DR can sort it out for you sweetie

[Bindi]

am very sorry to hear that you are dealing with such a horrible situation (hugs )

i have endometriosis and cysts. it has taken 10 years for the docs to take me seriously and find out what was causing me sooo much pain. it ruined my life and still is. so i realy understand what you are going through and how you are feeling. (more hugs)

pm me if you want to chat more about it k :)

you need to get a laparoscopy, they need to look inside as ct, x-rays and all those tests do not show if you have endo, it doesnt show up on a scan.

be very force full with the docs and dont down play your symptoms. be assertive and tell them everything.

i to have considered suicide at certain points in my life but it is not a way to solve the prob. you will get better but it might take some time. have faith k :)

good luck and remember your not alone and there is support out there for you :)

XX

[la tortuga]

how can they just drop you.. cant u get them the paperwork and be back in? that is such BS- I hate Insurance Co.

I hope the DR can sort it out for you sweetie

Well, yes, we can... but you know how those things go, with paperwork and such. I'd be shocked if I was covered again by the time school begins for the fall semester, much less my appointment on July 14th. However, the point of that appointment is to say "okay we've got you to a certain point with medicine so we can actually see what's going on, so let's move forward"... so without meds, it's not even worth going, everything is getting pushed back. It's been pushed back eight years, you'd think somewhere along the line I'd stop getting passed around or given some sort of "band aid" treatment and sent home... but that's the American approach to illness, I guess.

[Willow Rosette]

Oh honey Im so sorry! I dont have any amazing words of wisdom but I am here if you need to talk. Just a click away!! :hugz:

[alwaysfallingup]

Are you seeing a reproductive endocrinologist? That's where I ended up with a diagnosis finally.

I hope that you can get it all straightened out. Maybe you can call the insurance company and explain you have a standing appointment with a specialist and try and get your coverage expedited? Could you fax everything in?

Also, I hate to say it, but you may want to consider biting the bullet and just paying this out of pocket for this visit. It's going to be expensive, but you can make payments on it, and it might be worth it for you and your health.

:hugs: I hope it all works out!

[watersprite]

Y'all are missing the point here. She is no longer covered. And if they DO cover her again they will say it is a pre-existing condition. Insurance is big business. Have your family get the papers today, take them in and ask do they need to go to the press with the company's name in big letters, sue them or both. it needs to be taken care of. These people already had all that information. They are just trying to weed out whomever they can.

[Raven Reed]

I don't know if it would be at all helpful in your situation but I was having really horrible periods. (Squeamish people should leave the thread now...) I would wear a tampon and a pad, and be in public and sneeze, and blood would hit the floor, through jeans... It was truly disheartening. They never figured out a cause, either. They wanted to take out my uterus, but I was not interested in that option.

Instead, I tried the Mirena IUD. It has hormones like the pill, but they are localized, which for me is a blessing because I was getting all sorts of bad reactions to the pill. Anyway, after going through about six months of weird periods and random spotting, my periods are finally normal. If you can get insurance to cover it, it lasts about 5 years.

I hope all goes well for you.

[Bindi]

Y'all are missing the point here. She is no longer covered. And if they DO cover her again they will say it is a pre-existing condition. Insurance is big business. Have your family get the papers today, take them in and ask do they need to go to the press with the company's name in big letters, sue them or both. it needs to be taken care of. These people already had all that information. They are just trying to weed out whomever they can.

i was unable to get insurance to so i saved up and paid for it all myself, the whole $7500 .

if it is affecting your health that much then its totaly worth the money and being broke after paying for treatment.

if insurence wont help then do it your self, save yourself all the stress and bother.

good luck and well blessings XX

[Raven Reed]

Can't Planned Parenthood help somewhat? I think they operate on a sliding scale. It is birth control pills, right?

[Raven Reed]

Well, they won't do the tests and whatnot, but if you are wanting more pills, I would look into PP. By the way, they ran all sorts of tests and never found out what was causing my out of control periods... It can be very frustrating.

[Sequoia]

Oh geeze... I don't have much to add, other than :hugz: :hugz: :hugz:

[Calli]

Same here. I don't know what to say, but my thoughts are with you.

[Cloaked Raven]

:hugz: I'm keeping you in my thoughts and prayers. :hugz:

[la tortuga]

Are you seeing a reproductive endocrinologist? That's where I ended up with a diagnosis finally.

I hope that you can get it all straightened out. Maybe you can call the insurance company and explain you have a standing appointment with a specialist and try and get your coverage expedited? Could you fax everything in?

Also, I hate to say it, but you may want to consider biting the bullet and just paying this out of pocket for this visit. It's going to be expensive, but you can make payments on it, and it might be worth it for you and your health.

:hugs: I hope it all works out!

I haven't been to my OB/GYN yet to be referred to one, but my mother and I were discussing it and she thinks I'll end up going to a hormone specialist of some kind.

Well, the insurance company has been screwing us over royally lately. I thought it was bad when I had to fight tooth and nail to have bcp covered by them when I was twelve because it was for medical purposes. I highly doubt they're in the mood to help us. First of all, my sister has been seeing a psychiatrist that my mother had to fight to get the list for from the insurance company, then a week ago or so they sent her an OEB with a charge of three months worth of visits to that doctor. She even has the authorization code written down, but when she called they told her she had to file a grievance letter with them, so that will take weeks. They've refused to pay for out of network doctors working in our in-network hospital (and you can't choose who you see when you're in the hospital, really), and now they've dropped my two siblings, myself, and my mother from the health insurance even though my father called and asked for an extension on the deadline because we got the letter in the mail after the deadline date. So, no, they're not going to help. After ten years with the same insurance group, they're asking whether or not I'm my father's child. It's ridiculous.

I think that's what we may very well end up doing, paying out of pocket. We really don't have the money, though, and I don't know how all of that is going to work out... I'm not going to miss that appointment, as it could have some serious repercussions for me. I'm already missing too much school due to being too dizzy to drive or waking up and collapsing trying to get out of bed. I can't afford to keep going on like this.


I don't know if it would be at all helpful in your situation but I was having really horrible periods. (Squeamish people should leave the thread now...) I would wear a tampon and a pad, and be in public and sneeze, and blood would hit the floor, through jeans... It was truly disheartening. They never figured out a cause, either. They wanted to take out my uterus, but I was not interested in that option.

Instead, I tried the Mirena IUD. It has hormones like the pill, but they are localized, which for me is a blessing because I was getting all sorts of bad reactions to the pill. Anyway, after going through about six months of weird periods and random spotting, my periods are finally normal. If you can get insurance to cover it, it lasts about 5 years.

I hope all goes well for you.

That's how I was when I was twelve, I remember one day in my biology class I was sitting on a chair and I stood up and it was red... it had previously been yellow. That was a week before I finally told my mom there was something wrong and she went nuts over it, she was very upset and she yelled at me and yelled at me and yelled at herself. Then, she made an appointment and we ended up having to miss it because some buttface parked behind her car in the parking lot. I went to the ER that night.

They never mentioned a hysterectomy to me because they eventually found a bcp that worked moderately well enough to not have to worry about it anymore. I'm kind of a back burner case, haha. My mom and I have discussed what would happen if they mentioned it, though, and I know that I don't want it but if it meant possibly getting much worse and risking it, I'd have to do it. It would break my heart and leave me completely different than I have ever been before, but I'd have to keep truckin'.

They don't seem to have found anything wrong with me, either. Only problem with Mirena is it works for 5 years and I'm 20. I want to have kids at some point after college and before graduate school and 25 fits in that category. However, if I'm going to have to be on bcp the rest of my reproductive life it really kind of is a moot point.


Can't Planned Parenthood help somewhat? I think they operate on a sliding scale. It is birth control pills, right?

Yeah, but not just any regular ol' ones. Seasonale. I'm not sure if PP will get those since they're meant for bcp but also hormone regulation. They don't have much use for that last bit and they're more expensive.


Well, they won't do the tests and whatnot, but if you are wanting more pills, I would look into PP. By the way, they ran all sorts of tests and never found out what was causing my out of control periods... It can be very frustrating.

Yes, it is very frustrating. Especially when I can't remember what tests have been done on me or when it happened. Anemia. Oh, the joys.


Y'all are missing the point here. She is no longer covered. And if they DO cover her again they will say it is a pre-existing condition. Insurance is big business. Have your family get the papers today, take them in and ask do they need to go to the press with the company's name in big letters, sue them or both. it needs to be taken care of. These people already had all that information. They are just trying to weed out whomever they can.

They tried to say it was a pre-existing condition when I was 12, it's not a huge deal. It technically was our fault since we did miss the deadline, but it's not also because we got the request after the due date. I'm so angry about it, but I'm trying to be reasonable. There's no point in going to the press, it's happening everywhere. Want a good job that won't go away real soon? Call center for health insurance.

[la tortuga]

Right, so one of the nurses at my doctor's office called and basically I had to tell her all the same stuff that I told the other nurse last time I called to make the appointment. She said that the doctor had not been in so my prescription had not been sent in, and now because I haven't been on the pill for two years the doctor is not likely to allow me to take it again without having an exam first.

So, here's for two weeks left while I'm already having fatigue problems. This is horribly stressful. I'm at school and really don't want to start crying, it's not the place or the time but I'm really upset and don't know what to do. She said she would call me back tomorrow, so I guess I'll be back with that information once I have it.

[Raven Reed]

If you know you get anemia easily, I would certainly make sure you are taking iron supplements if you are not taking a multi-vitamin. I would also take E and the B vitamins for stress.

By the way, with some insurances, if you have not been treated or seen for a doctor for some period of time (say 2 years) for an issue they will cover it even though it is a pre-existing condition, or at least that was the case some years ago. Insurance varies so much it is hard to say for certain, but you might want to look into that.

[la tortuga]

If you know you get anemia easily, I would certainly make sure you are taking iron supplements if you are not taking a multi-vitamin. I would also take E and the B vitamins for stress.

By the way, with some insurances, if you have not been treated or seen for a doctor for some period of time (say 2 years) for an issue they will cover it even though it is a pre-existing condition, or at least that was the case some years ago. Insurance varies so much it is hard to say for certain, but you might want to look into that.

Thank you for the advice. I've been taking my vitamins like a good girl, though. I am the vitamin QUEEN.

Hm, my father said I would be retroactively put back on the plan as soon as the paperwork goes through, but I have no idea how long that will be. Hoping it's before friday after next, though. Just because that would be easier. He's said flat out that if I need to see my doctor before then or go to the emergency room, he'd take care of it. My family is just kind of strapped for cash these days, unsurprisingly. We've had the house under construction for over a month now, it's been really kind of sucky.

Oh, and the nurse didn't call me back today. I'll call her tomorrow, I guess.

[yarrow_elfglow]

keeping you in my thoughts and prayers hunny! *huggles*

[Philosophia]

Can't say much except :hugz::hugz::hugz::hugz::hugz::hugz::hugz::hugz::hugz:

[Gypsyballad]

I'll keep you in my thoughts and prayers. :hugz:

[Morgaine_cla]

Greetings,

I am sorry to hear you that you have been dealing with this. It's inexcusable that it's gone on this long and still no one can tell you why!... May I ask if you've consulted anyone qualified in alternative healing modalities?... They have an entirely different approach. Instead of treating the symptoms, they treat the cause of the symptoms. This does mean that sometimes it's a slower process than just getting a shot or taking a pill... but it does work and it might help your body regain a healthy balance. Even if it takes time, it can't be worse than what you're going through now! If it were me, I would consider seeing a Master Herbalist or Naturopath.

I might also consider having some sage tea with honey (1 cup per day) or yarrow tea (2-3 cups per day), to help stop the bleeding. Avoid blood thinners (aspirin and certain herbs like red clover, willow, pennyroyal). I would also consider taking large doses of Vitamin C (start with 1 gram per day and go up if needed to as much as 3 grams per day) might be helpful. That's where I would start if I were in your situation... (Of course, if you choose to do this, you will need to check the teas with your doctors to be sure they are not contraindicated by any meds you might be on right now.)

Wishing you all the best,
Morgaine

[la tortuga]

Thank you everyone for your thoughts and prayers, and here's an update!

The nurse at the doctor's office did not call me back about the medication, but... that's okay! I've been breakthrough bleed free for over 24 hours (since night before last) and I'm really hoping that this is going to be the end of it, or at least see me through to my appointment with my doctor! Wish me luck!

[Toki Wartooth]

Ah, that's better news. Good luck! I hope things stay like that!

[Gypsyballad]

Yeah, me too, Tortuga. Hope things work out for you. :)

[Clair de la Lune]

I hope they finally get to the bottom of this (sorry :) ) and get you on your way to answers and feeling better very soon! I hope it is something simple and easy, and not scary.:hahugh:

It could be polycystic ovarian syndrome, and if so, you already know of others on here who have that. A person can still have kids with that, and if you have to be on a form of birth control for it, when you are ready to try for kids someday, simply talk to the doctor about the best way to go about it. You may find they have to simply remove some implant they put in you like an IUD, or you may simply be able to stop taking your birth control pills. They told me that if I didn't conceive in a year's time of trying, that we could then come in and have him tested for low sperm count (because it is easier to test the male so they do that first) and if that turned out ok, they send you to a fertility specialist. (I have never gotten that far, because we are not trying.) :smile: I know lots of people who have had babies with PCOS, and even endometriosis, although that person had to have surgery first. Just remember that you are not out of the running yet, and if you really want a family and find you can't make your own baby, there are millions who would love to find a home and a family with you who do not have their own. Adoption is always an option.:uhhuhuh:

Sorry about the insurance hassles. That really sucks! I hope that gets straightened out very soon!!

I hope that it all gets figured out soon and that you keep us updated. :hugz:

Blessings,
Clair

Edited to add: I have PCOS, and I have had to be on b.c. pills since the age of about, gosh, I can't remember if it was 10 or 12, because I could never tell when my period was going to start, and when it did, it was SO HEAVY I had accidents all the time, and the cramps were terrible...not to mention the mood swings and PMS!! I started my periods at 10. Every once in a while, my body gets used to the pill I am on and they have to get me on a different one, but I seem to be on the perfect pill for me (or nearly perfect...still have some spotting and don't have the same "start day" every month like some people do). Even at times I have gone off the pill to see if I would regulate it didn't. I would go 6 months without a period, then have one for 3 of 4 weeks of a month. I had borderline anemia during my period as a teen, so I had to take Optivite since it has higher iron content than most multi's.

Hope I have helped. At least you know that I have been through something similar, even if it doesn't turn out to be the same thing.

[Faol-chù]

If it's endometriosis, I'd strongly suggest you contact me regarding ragweed tincture.

Seriously, it has helped a lot of people I've been in contact with when nothing else, short of surgery would.


http://mysticwicks.com/showthread.php?t=205788&highlight=ragweed

[la tortuga]

I hope they finally get to the bottom of this (sorry :) ) and get you on your way to answers and feeling better very soon! I hope it is something simple and easy, and not scary.:hahugh:

It could be polycystic ovarian syndrome, and if so, you already know of others on here who have that. A person can still have kids with that, and if you have to be on a form of birth control for it, when you are ready to try for kids someday, simply talk to the doctor about the best way to go about it. You may find they have to simply remove some implant they put in you like an IUD, or you may simply be able to stop taking your birth control pills. They told me that if I didn't conceive in a year's time of trying, that we could then come in and have him tested for low sperm count (because it is easier to test the male so they do that first) and if that turned out ok, they send you to a fertility specialist. (I have never gotten that far, because we are not trying.) :smile: I know lots of people who have had babies with PCOS, and even endometriosis, although that person had to have surgery first. Just remember that you are not out of the running yet, and if you really want a family and find you can't make your own baby, there are millions who would love to find a home and a family with you who do not have their own. Adoption is always an option.:uhhuhuh:

Sorry about the insurance hassles. That really sucks! I hope that gets straightened out very soon!!

I hope that it all gets figured out soon and that you keep us updated. :hugz:

Blessings,
Clair

Edited to add: I have PCOS, and I have had to be on b.c. pills since the age of about, gosh, I can't remember if it was 10 or 12, because I could never tell when my period was going to start, and when it did, it was SO HEAVY I had accidents all the time, and the cramps were terrible...not to mention the mood swings and PMS!! I started my periods at 10. Every once in a while, my body gets used to the pill I am on and they have to get me on a different one, but I seem to be on the perfect pill for me (or nearly perfect...still have some spotting and don't have the same "start day" every month like some people do). Even at times I have gone off the pill to see if I would regulate it didn't. I would go 6 months without a period, then have one for 3 of 4 weeks of a month. I had borderline anemia during my period as a teen, so I had to take Optivite since it has higher iron content than most multi's.

Hope I have helped. At least you know that I have been through something similar, even if it doesn't turn out to be the same thing.

That sounds very similar to my situation, I hope my doctor can help me get to the bottom of what's going on, too! Endometriosis runs in my family, though, and for one of my US a few years ago the doctor had noticed something more solid blocking my cervix, and he thought that may be a reason for the continued bleeding it may have just been blocked in but within 24 hours a huge clot came through, which was disgusting beyond all of my ability to describe, but we never went forward with more testing to see what was going on.


If it's endometriosis, I'd strongly suggest you contact me regarding ragweed tincture.

Seriously, it has helped a lot of people I've been in contact with when nothing else, short of surgery would.


http://mysticwicks.com/showthread.php?t=205788&highlight=ragweed

Thank you, I will make sure to let you know when I find out, since any help would be much appreciated!


Thank you everyone for your thoughts and prayers, and here's an update!

The nurse at the doctor's office did not call me back about the medication, but... that's okay! I've been breakthrough bleed free for over 24 hours (since night before last) and I'm really hoping that this is going to be the end of it, or at least see me through to my appointment with my doctor! Wish me luck!

... and within a few hours of posting this the breakthrough bleeds started up again. :(

[HiccupingBat]

I'm sorry to hear about all this and what BS with the insurance....*shakes head*

I'm going through almost the exact same thing (save NO period...even with progesterone to induce...), hormones and pain and some thyroid problems too, going in, in a week. Endometriosis and PCOS are suspected or a thyroid issue.

My thoughts are with you! Good luck!

[la tortuga]

Okay, so luckily enough the health insurance stuff was fixed before I went to the doctor today, so everything on that account is just fine.

So, I went in and had my ultrasound first with the ultrasound technician and while she was doing it, I noticed there was something terribly wrong with my uterus. Horribly so, I couldn't put my finger on it but I knew it was wrong. I did a clinical rotation in the ultrasonic imaging unit at the local hospital and saw enough of what a healthy uterus looked like to know that this wasn't it. The technician could not tell me anything but took all kinds of pictures from different angles and with different measurements. (Now I'm wishing I had requested a copy). Essentially, the image I saw on the screen looked like a heart instead of a pear, like a regular uterus.

She also found cysts on my ovaries, PCOS. I didn't even have to ask, it was plain as day to me, too. I'm not too terribly surprised, it's what I was expecting, pretty much. I was more worried about "oh gods my uterus is deformed and they're going to tell me that's the culprit with these problems and they are going to take it out and rob my 20-year-old self of the slim, but only, chance of regular, natural parenthood!" (Hormones talking, I've been really emotional lately because of it.)

The time in the waiting room felt like an eternity, but I was finally called back to talk to my doctor and he was bouncing on his heels and looked incredibly excited. SO excited. He started out with "well, yeah, you have PCOS..." and I explained I had done my research on it and he said "Well, okay, I want to see you in three months to see whether the new birth control I'm going to give you is going all right, okay?"

I didn't want to ask about the uterus thing.

... and then he said "Well, I bet you're wondering about why you've had so much trouble with periods and such, and I'm happy to tell you the reason why. The condition is called bicornuate uterus, which means basically you have two uteri. They are conjoined at the base so you have one cervix, one vagina, which is good because I once had a patient with two vaginas, it was weird... So, what's happening, I'm guessing, is with the PCOS and irregular hormones, one of your uteri will begin to shed its lining... and then the other one will, resulting in, essentially, staggered periods. Get your hormones regulated with birth control, and you're set. We'll discuss the PCOS stuff again in October."

... and that was it. I know, essentially, it is bad news. My mother is probably still sobbing. But, for once, I have an explanation. The statistical probability of this happening, both conditions, in one person is .005% and, well, I got smacked with the percentage. I'm just going to have to live with it, I guess, and for now I'm just so incredibly happy that I have a reason, now. I can understand what's going on, now. I'm not afraid anymore, and there's still a chance, even though it's a little bitty one.

Thank you all for your support and advice, and I guess we'll see how things go in October? :)

[Toki Wartooth]

Hooray! Glad to hear it. I'm glad you guys finally have some concrete results here.

:hugz:

[Clair de la Lune]

Whew! It's about time!!:boing: I know it's not the best news in the world...but hey, nobody can say you're not 'one in a million'...or so!:hahugh: Just adds to how truly unique you are!:thumbsup:

I am so glad you are getting things figured out!!! That is so exciting! I have been thinking about you.:smile:

Please keep us updated, ok?

:hugz: and blessings,
Clair

[Caitlin.ann]

So sorry I didn't see this sooner! :hugz: