PCOS/Insulin Resistance Support Support for us with any of the following: Insulin Resistance, Syndrome X, Polycystic Ovarian Syndrome, or other endocrine disorders.

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Old 05-05-2011, 02:13 PM   #1  
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Unhappy Trying to find out whats going on

This might get a little long.. I'm pretty irritated right now.

I first had problems at about 16. I knew I had cysts on my ovaries, but my parents wrote it off and wouldn't listen to me. Then I had a cyst rupture and found out I had another one on my right ovary that was 6cm. I went to a doctor that seemed pretty understanding. She put me on Yaz and I was great for a year and a half. Then she decided to stop practicing and I went to someone else in her practice. I had a little mild spotting and she said my pills weren't working anymore and put my on OTC-lo. I bled for 3 months straight. So then she put me on seasonique, and my moods went crazy and I bled like crazy.

So I went to a new gyn. I told him about the pain I was in and he told me that I probably never had cysts in the first place and "girls parts just don't work like that". When I asked him about weight loss he told me to go on a 700cal/day diet and said that exercise really doesn't help. I asked if the pill could hinder my progress and he said people only tell me that because they want me pregnant. And then he answered his cell phone in the middle of my pelvic exam. He gave me some low dose stuff that a rep gave him and I tried it for a few months and again couldn't stop bleeding.

So I decided to just go to PPH. I've been there for a year on some generic HBC, but of course they can't diagnose anything or do blood tests. I'm getting constant heavy bleeding while on this HBC. I'm also having mega trouble losing weight, have an increasing amount of body hair, and pretty much constant pain coming from my reproductive area. So I decided to go to yet another gyn. He did and ultrasound and found no more cysts (yay!) but was pretty short with me and said that I needed to be on a name brand hbc if I wanted it to work.

I feel like every doctor I've gone to won't take the time to actually LISTEN to me! I know somethings not right with my body.. why won't anyone just listen and help me? I know I'm not imagining this heavy bleeding and sharp pains.. I just feel so helpless right now

Last edited by Kelli21; 05-05-2011 at 02:13 PM.
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Old 05-05-2011, 02:23 PM   #2  
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Get to a different Doctor ASAP. Seriously, if a GYN called my organs "girl parts" and said they didn't get ovarian cysts, that'd be my cue to leave! You have imaging that shows you cysts, you get cysts. What you really need now is a good Doc who gets it. You don't deserve to be condescended.
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Old 05-05-2011, 03:10 PM   #3  
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Defo find a different doctor. Finding an understanding doc is key to treating anything related to PCOS even if it isnt pcos. ESPECIALLY ovarian cysts and weight loss for a woman.
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Old 05-05-2011, 03:42 PM   #4  
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See an endocrinologist- most primaries don't seem to know much about PCOS. My endo and current primary were the only ones who really listened.

700 calories a day? NO NO NO NO! I don't know what your diet currently is but South Beach diet is highly recommended for people with PCOS. I know it's the ONLY thing that has worked for me I starved myself before and that didn't work.

If you are looking for a new primary ask them what their experience is with women with PCOS (more than just "yeah I've had those patients" ask them what they DO for the patients). Remember there are SOME doctors who don't believe in PCOS (Shocking but true). If the answer isn't "I do blood tests and see about medication, etc" then keep looking. And endo IMO is the best person to see btw.
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Old 05-05-2011, 03:46 PM   #5  
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Well I think we can all agree that the gyno that told you to eat 700 calories a day is a quack. My goodness.

But you are in pain. This needs to be investigated. If you've had ultrasounds not reveal any cysts, then you need to have the proper blood tests to rule out PCOS.

Pain and heavy bleeding are markers for endometriosis and it needs to be addressed. There's no reason for you to have to live in pain because doctors will not help you. I was in pain for so long until I had enough and demanded my doctor figure it out. I ended up having surgery to fix it and I feel like I have a new lease on life.
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Old 05-05-2011, 03:49 PM   #6  
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I agree with Junebug and forgot to add all this bleeding MUST be making you anemic! Has that been addressed by any doctor?
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Old 05-05-2011, 04:49 PM   #7  
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Default have you checked your saliva PH

I recovered from chronic fatigue on the raw food diet. But before I started, I found out that many health problems, including weight gain, are low body PH. When I was at my sickest, my saliva PH in the morning was 4.5! Almost like a coke. Now I'm at 6.6. That's why the weight dropped off, and I feel awesome, and look younger
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Old 05-06-2011, 09:15 AM   #8  
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I do terrible on triphasic -- when you see a new doc, mention that you might want to stick to monophasic BCP so the dose is steady and even. There is usually "tri" somewhere in the name. Ex: Orthotricyclen vs Orthocylen

IME, triphasic formulas with the changing hormones is no good when my hormones are already bopping around from the PCOS. I need stability, not MORE bopping around!

Print the inciid FAQ too... esp the dx labs.
http://www.inciid.org/faq.php?cat=complementarymed&id=2


HTH!
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Last edited by astrophe; 05-06-2011 at 09:15 AM.
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Old 05-06-2011, 09:33 AM   #9  
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Default Trying to find out whats going on

Well you just have a competent doctor so that all your problems about ovarian cysts will be solved. There are many doctor's who are expert in that particular matter and can be.
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Old 05-06-2011, 04:41 PM   #10  
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I think my main problem is finding a doctor. The 4 I've gone to so far is pretty much everyone in my area, so it looks like I'm going to have to go more towards Chicago to find someone. It just seems to me that they care more about giving me guilt about if I use condoms or not and giving me paps. Not the sharp pain that I get randomly coming from my reproductive organs, or the heavy 10+ day periods, or even the fact that I have pain during sex. Nope. None of that matters.

4star - when he said what they don't do he was talking about the random sharp pains I get. He later said it's probably just gas and I need some antacids.. I know what gas feels like and this is NOT gas. But he also wrote off my cysts like they're some uncommon thing that no one gets. I would think my previous ultrasound showing one plain as day along with a huge fluid pocket would prove to him I had cysts, but guess not.

Junebug - I'm pretty certain that due to my symptoms I either have PCOS or endometriosis. My cousin has PCOS, and that whole side of the family has major diabetic problems, and my aunt has endometriosis.

beerab - I take a daily iron supplement to help with anemia. My first doctor told me I should take them because of my heavy periods. I'll also look for an endo in the area and see if I can go to them. At least they'll probably do some bloodwork to see what's going on.

Pamela - Once I can find a doctor I'll ask about the pH... or maybe just use some strips from our biology lab lol. Thanks!

astrophe - I hate triphasic. All but my first doctor has tried to put me on it. They're hard to stack, and make me the moodiest person you will ever meet, and also make me bleed non-stop. This last doctor came in with samples of OTC-lo for me even after I told him twice I did NOT want that. And got angry when I told him I wanted something different.
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Old 05-07-2011, 01:08 AM   #11  
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Have you tried primary care/family practice? I actually love my physician assistant at our family practice because she is my age and actually LISTENS to me.

Previously I had bad luck with specialists. My endoc is a diabetes/metabolic specialist rather than an endoc that is a reproductive specialist too.

The reproductive ones I saw whether endoc or ob/gyn seem to be obsessed with reproducing/sex rather than overall health. So I don't blame you for shying away from them if they are all pushing condoms, triphasics, and not LISTENING to you.

Hang in there!

Try www.soulcysters.net too in case there's suggestions for docs in your area. That's a bigger pcos board than here. I like the cozy here, but sometimes a bigger board can give more practical tips for docs in the area.

Also check out "It's my Ovaries, Stupid!" by Elizabeth Vliet -- that might give you more pointers for what to ask for.
GL!
A

Last edited by astrophe; 05-07-2011 at 01:11 AM.
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Old 05-07-2011, 12:32 PM   #12  
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I too had trouble finding a good doctor to treat my pcos. I even had doctors claim that I didn't have pcos because I was not overweight. So I understand how fustrating it can be. I am right now seeing a reproductive endocrinologist who is a godsend. He is the first doctor who was willing to do all the tests without saying "Come back when you are ttc and I will prescribe clomid".
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Old 05-07-2011, 11:53 PM   #13  
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astrophe - thanks for the link! I was able to find out through that site that Northwestern University by me is doing PCOS research. If you have irregular periods they do a free scan for you to see what's wrong and have studies going with Insulin resistance and everything too that I can actually participate in. So I'm going to get in contact with them and go up there this summer. I'm so excited I'll finally have a doctor that will listen to my symptoms.. thank you!!
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Old 05-09-2011, 10:37 AM   #14  
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Good luck! That sounds promising!
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Old 05-09-2011, 11:04 AM   #15  
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Oh, yay! That DOES sound promising!

GL!
A.

Last edited by astrophe; 05-09-2011 at 11:04 AM.
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