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KEDRA231's Photo KEDRA231 SparkPoints: (4,439)
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3/21/12 5:56 P

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Don't give up on the doctors, give up on the nurses! Unfortunately, they're the first hurdle you have to leap to talk to a doctor, so even if the doctor would understand, you have to reach him first! ANY time I've EVER spoken to a nurse they've told me to go to the ER; they don't take chances, they don't want any liability, & sometimes, you need to just get tough with them & say "Listen, I've lived like this for over a year; if I haven't bled to death by now, I won't before you can get me an appointment. Now if you don't understand PCOS, fine, let me talk to a doctor or another nurse that does." If you get attitude, go elsewhere. Making the calls is time consuming, but free. You don't have to put up with stupid. There are still a LOT of nurses & even some doctors that still do not thoroughly understand PCOS & all the happy little problems that come with it. Another poster mentioned an endocrinologist; sometimes they are the best place to start.

I went from having NO period unless forced to having one whenever, sometimes for months straight, and heavy. The OB I went to at that time told me you can bleed, and bleed, & bleed some more b/c you might not be shedding all the layers. I don't know if that's the full deal or not, but he put me on Progesterone, & it really helped. I am still getting a period (on it's own schedule) but it's more manageable now, & if it goes wonky they stick me back on Progesterone.

Like a previous poster answered, a hysterectomy will take care of the bleeding, but not the weight, hair, other PCOS issues. I had a friend who had just her uterus removed, & the bleeding stopped, but she also immediately put on 20 lbs.

Not having insurance sucks, but I would talk to them about cost or see if you can get on some kind of temporary state aid until you find another job. They say Laparoscopy, but many times when they get in there, they also wind up doing more (but you can also talk that over before) & sometimes drilling, or a partial oopherectomy can all help & will be done during the procedure. However, you're right that it could be a temporary fix. Everyone's body and hormones are different. You could be more regulated permanently, or you could be back to the same issues within a year. Or it could fall anywhere between.

If you're really to the point that nothing else matters than stopping the bleeding, I would talk to various women in the neighborhood or that might use the practice and then ask them if they know of a doctor that they'd recommend, & straight out tell them that you're looking for a doctor to perform a hysterectomy. You're not interested in any other procedure, b/c none of them have 100% success rate like a hysterectomy would for stopping the bleeding (other PCOS issues, no, but the bleeding, yes).

Best of luck. It's hard when you have limited options & the people you're dealing with are not all that helpful.

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SMUCHERS SparkPoints: (50,485)
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2/12/12 1:24 P

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I've been in your shoes and it is horrible! Especially now having insurance. With your problems though, you really do need a regular doctor so you can build a history. One problem I have run into, is if you have no kids, and are under 40 they won't do a hysterectomy. Good Luck though!

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GAJEN2345's Photo GAJEN2345 Posts: 300
1/16/12 8:40 P

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Not having insurance can really be a big problem. I usually call doctors and let them know first off I don't have insurance and see if they can give me a discount cause I am a cash paying customer. They usually will work with you. I have went to an endocrinologist and only paid $60. However, I had to pay for my blood work. But, I did the same thing with the lab and explained that I don't have insurance.

Jennifer


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JULMUT's Photo JULMUT SparkPoints: (20,958)
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1/13/12 12:33 P

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wow... what a tough situation. i hope you find a good doctor that will figure out what's really going on and come up with a good plan of action to get it straightened out! lack of health insurance makes it difficult, but if you can see an endocrinologist, they would probably be best at figuring out what's going on with your hormones. a lot of times when it seems like you should be seeing a gyn, it might actually be better to see an endo. i have found with pcos that the endo is better at getting to the root of the problem which has yielded better results, whereas the gyn or primary doc goes at things symptomatically, which can help, but usually gets frustrating because it just doesn't get as good of results. that's just my experience. i hope you figure out something that works for you!!!

Dream as if you'll live forever. Live as if you'll die today.
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If you have to tell someone how bad you want it, then you haven't shown them how hard you already work for it.
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Whether you get what you want isn't what defines you. It's how you go about your business.
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JENNIFERPS's Photo JENNIFERPS Posts: 50
1/11/12 2:28 P

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Several years ago, I bled like that. I wound up having a D&C and that really helped. Wishing you luck in finding a doctor/solution.

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BRIT-ABEE Posts: 45
1/11/12 2:19 P

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Well to up-date you on where am at today...
Yesterday I called the ER to talk to a nurse on the floor about my problem.
I told her I been bleeding for a year now, and the last few days have been really heavy.
She ended up telling me that if I felt like coming in they would be happy to help me, but they not a family clinic and that I should get a permanent doctor who can help me.
So I then asked if there was any low-income places, since sadly am un-employed and have no insurance. She told me to go to CHAS clinic, so I thanked her and looked up the number for them.
I called and started to talk to a guy and told him about my issue, he set me up for an appointment for 4:30 that day. So thinking great am finally going to get this taken care of.
An hour and half later this chick from CHAS clinic calls me back and starts asking me about my cycle and I told her, then she wanted to know how heavy so I told her I was changing out my items every 15-30mins. She then told me I need to go to the ER (the one I called right before I called them) to get an ultra sound done to not bother about coming in for my appointment cause they would just send me over there anyways.
So....Yeah.
That didn't happen, cause all I could think was-whats the point of getting an ultra sound done when I wouldn't even have a doctor to tell me the results?
I thought he would have seen me, do an annul or something and then like set up and ultra sound appointment through them so it would be low-income, then after that have me come back for my results? Guess not...

Am not going to give up, and I begin looking for another doctor, it just goes to show why I give up in the first place and can't stand doctors. :(


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JENNIFERPS's Photo JENNIFERPS Posts: 50
1/4/12 4:39 P

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I have had a similar situation. I am now doing progesterone therapy and have had pretty good success in stopping the bleeding. Go to this site and click on Cyclic Progesterone Therapy handout. Talk to your doctor about this option...

http://www.cemcor.ubc.ca/help_yourself/h
andouts/progesterone_estrogen_therapy

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BRIT-ABEE Posts: 45
1/4/12 4:14 P

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When I was diagnosed at 18, I was put on B.C to help my cycles and that's when the hassle all started.
I would be okay the first week on B.C but then I would just start bleeding....So then my doctor at the time would change the B.C I was on and we ended up changing it so many times and I mean many times for about a year and half, when I finally said this isn't working and gave up. She wanted me to go to a specials,but since I stopped taking B.C for good. I didn't bleed for a year so I never went at the time. After a year my mother wanted me to go in, so I did and he ended up putting me on the off brand for Provera to take every 3 months for 14 days so I could have a period.
That doctor then had a huge blow out and ended up decking another doctor and lost his job after my first visit there....So yeah, I continued with the Provera since I had 4 refills on the medications. I stopped looking for a doctor after that and was doing alright for a while, but now the past 2-3year I have bleeding pretty much everyday from spotting to heavy.
I been to a doctor here bout 3years ago who wanted to put me on B.C and of course I was like hell no am not going to go through all that again. So then she wanted to go in and re-move the cysts I have, which am thinking that's just going to put me into debt and I will probable just get another so it would be a waste of time/money. So that's why I think a hysterectomy would just be the best thing for me.
I have also been looking into getting my hormones straighten out to see if that could help me out before having a hysterectomy because I still think it would be nice to start a family of my own, but I also don't see that happening and am honestly okay with that.

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JULMUT's Photo JULMUT SparkPoints: (20,958)
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1/4/12 11:27 A

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just wanted to echo the last post... pcos is a metabolic issue where the hormones are out of whack. so you're not going to get rid of pcos. the hormones will still be there.

i guess if the bleeding were that bad, it might be an option. can you take birth control? and if so, have you tried it? it has made a world of difference for me. i've also heard people say that their cycle improved when they started metformin.

it is frustrating... best of luck, and hang in there!!!!

Dream as if you'll live forever. Live as if you'll die today.
-James Dean

If you have to tell someone how bad you want it, then you haven't shown them how hard you already work for it.
-John Mayer

Whether you get what you want isn't what defines you. It's how you go about your business.
-Scott Jurek






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LIBELULITA's Photo LIBELULITA Posts: 2,096
1/3/12 2:50 A

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I looked into a hysterectomy and / or ovary removal to help me with my PCOS and had it explained to me that it would not help at all with PCOS (although if your main concern is the bleeding I guess that would be different.I don't get periods at all and when I go through the yucky clotting stage once every few years I get a scrape).
They explained that no ovaries does not=no PCOS becuse PCOS just manifests it's problems at the ovaries,but the endocrine imbalance that causes it would still be there and thus the other symtoms that we hate so much.

If you hear any info contrary to this I'd be interested to hear about it.Good luck. emoticon

If you want be a butterfly then you you have to want to fly so badly that you are prepared to give up being a caterpillar.


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BRIT-ABEE Posts: 45
1/2/12 11:14 P

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I don't have a doctor here in Spokane, I have had a few check-up/visits here and there at deacons (sp?) and all they wanted to do was go in and remove my cysts off my ovaries.

So if I decided to go through it, I will need to find a doctor who isn't going to beat around the bush and just do it....
Which is another reason why I asked if it would be worth it. LOL
Also am wondering if it would help me with my weight loss, not having my problems/PCOS.

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GOLDENEYEZ1's Photo GOLDENEYEZ1 Posts: 116
1/2/12 10:55 P

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I haven't had a hysterectomy, however my older sister did a few years ago due to excessive bleeding and non stop. She said it has made her life so much better. What does your dr say? Has s/he recommended this step?

Stacy

New motto... By the yard, life is hard. But by the inch, it's a cinch!

you can do it....but, only if you try.


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BRIT-ABEE Posts: 45
1/2/12 7:15 P

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*Sorry if I posted this in the wrong area....*

I have had PCOS since I was 18, if not younger.
I have tried bout everything I can think of, and am just tired.
Am 27yo and I can't have a life, cause I can't leave the house with out wondering if am going to flood my self or not. I bleed everyday from light to heavy depending on how much I work out.
The past few months I have been looking into getting a hysterectomy and was wondering if anyone has had this done?

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