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Just diagnoised with PCOS
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beccarn09 posted:
Hello everyone..This is my first time posting here..But by reading everyones post you all seem like wonderful and helpful people!! I am 26 and was married in November. Stopped taking Birth control in November and have not had a period since. I figured this was normal after being on birth control for 8 years. I did make an appointment about 2 months ago with OB/Gyne. She did some blood work to check my thyroid and hormone level and it all came back normal. She did prescribe Provera. I took that and nothing happpend. Went back to doctor a week ago and she gave me another round of Provera (still waiting on period stopped taking on tues) and did an U/S. My doctor called me yesterday and told me that it showed I had PCOS...I feel like a have A MILLION questions. I am an RN so i feel like i should know this stuff but I have no idea. I have no current health problems and am not overweight. I am confused by this diagnosis because it seems like all the research I have done it says to lose weight and take care of your BP issues or keep your blood sugars more normal if diabteic...Well I have none of this probelms and looking for some help!! I am very Anxious, scared, nervous, etc...We really wanted to start trying for a baby but it has been very difficult with no periods. I think I am just looking for some reassurance or help from you guys on where to go from here...I have clomid that she wanted me to try if I start my period this month, i was going to do it for one month with blood draws throughout to make sure my body is ovulating...I feel very discouraged right now...Any advice is welcome!! thank you
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CEB85 responded:
Hi beccarn09, welcome to board... Sorry you have to be here... There are some wonderful ladies on here and odds are one of us can answer specific questions you might have.
First off, I too am like you and show no physical symptoms of PCOS. I'm not over weight, no facial hair and I really don't have acne issues. I'm not insulin resistant either. Basically I have elevated testosterone levels and the poly cystic ovaries. There have been times I have to remind my RE that I do have PCOS.
I also, like you would not get a period on my own. I always needed provera. I can't remember what its called but if provera doesn't work there is something else that works when provera doesn't. Its driving me nuts that I can't remember the name.
I also started out on the low dose of clomid, it did nothing for me. They kept increasing my dosage and then combined it with dexamethasone to reduce the testosterone and still nothing. I eventually had to move onto injectables with the dexamethasone and finally got a response. We did the injectables with IUI and our first round we got a positive and later found out we were expecting twins. I unfortunately lost both last August. We tried a couple more rounds with IUI and eventually moved onto IVF. My first round of IVF resulted in a chemical pregnancy and I'm currently in my second round, and about to do my transfer this coming Wednesday.
A little advice, since you know you have PCOS please don't hesitate to get in to see and RE. They are way more experienced at this stuff than a regular OB/GYN. I know its a big leap to take but its so worth it in the end.
Oh, and also, even though I'm not insulin resistant I also take Metformin, they have found that it helps some women with PCOS to prevent miscarriages since we have a greater chance of miscarriage. I asked about it after my first m/c and even though I don't need it my RE put me on it as a precaution. He said it can't hurt anything so way not?

Please feel free to ask any questions and I'll do my best to answer them for you. I know how devastating it is when you first find out. For me, when I found out my Dr. left a voice mail for me on a Saturday afternoon telling me I had PCOS and that was it. I had never heard of it and it scared the crap out of me. I researched like crazy online until I was finally able to speak to her to get some answers.
 
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FrenchBulldogMom responded:
I was diagnosed with "mild PCOS" 2 years ago. My RE put me on Metformin. We had to do 2 IUIs and 1 IVF to get pregnant, but this had to do with me having uterine polyps, not the PCOS, per se. I am overweight, and I never ovulated, to my knowledge. My periods were always very light and about every 2-3 months. I don't have the facial hair problem that my sister does. She has PCOS way worse than I do.

CEB85 is completely right. If you are ttc, you should definitely start seeing a specialist. My OB/GYN immediately referred me to one because my husband and I had been trying for over a year and we were 34 at the time. It was a great decision for us because they had so many more treatment options for us at the fertility clinic.

Right now, I'm in the hospital for 11 more days on bed rest waiting for my scheduled c-section. Then, we finally get to meet our twins!

Please keep us posted and I'm sending tons of baby dust your way!!!


*** P.S.*** You will probably feel much better once you get a treatment plan in place. I know it helped me a lot, just knowing what we needed to do.
Me 35, DH 36, TTC since 2009, IVF Oct 2011, BFP Twins!!! Due Date 7-18-2012!!!!
 
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beccarn09 replied to CEB85's response:
Thank you for all of your great information. I still think I am in complete shock. I never thought I would have any problems. Both my sisters have children and had no problems getting pregnant so I guess I thought I would be the same. I guess I thought in the beginning that it was because I was on birth contorl for so long and then when I stopped and didn't have a period I guess I thought it was because of stopping. Do you think that being on birth control for so long had anything to do with this? I just keep trying to ask myself what did I do. I know there is probably nothing i did, but I do keep asking myself. I am kind of spotting today a little bit with the Proverea this is day 4 after the medication. So i hear it can take up to 7 days to get a period after medication. But it didn't work the first round. I am trying to stay positive. If I do get my period this time we will do the clomid for one month and get all of my hormone levels checked throughout the month.
I have another question. Can I only get pregnant with fertility medications? and do we have a higher chance of miscarriages with PCOS? I have so many thoughts and concerns.
 
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beccarn09 replied to FrenchBulldogMom's response:
I am so happy for you!! Twins is awesome!! We haven't really been trying to concieve yet, well because I haven't had a period to track days. I did try last month an ovulation test when I had spotting with provera and it said I was? But it was very random and I honestly don't know if it was positive. Do we not ovulate on our own with PCOS? My ultrasound said everything was ok, except for multiple folliciles? so what does that mean, I only have a mild case you think?
 
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CEB85 replied to beccarn09's response:
First off, nothing you did could have given you PCOS. My Dr. told me its something we're born with and and they're finding it seems to be genetic with PCOS. Its unlikely birth control caused this. Were you regular before BCP? I never was and was put on BCP to try to regulate.
You might be able to get pregnant on your own without fertility drugs but most likely it will take much longer. Instead of the average women ovulating 12 times a year, those of us with PCOS might ovulate 3 times, give or take a couple times depending on the person.
Unfortunately those of us with PCOS do have higher chances of miscarriage, which is also why I suggest seeing and RE. They monitor you so much closer than your OB?GYN would and they are able to prescribe different meds to help with it as well. I know that is scary to hear but, I have "met" several wonderful ladies on this board, once of which I have become very close to. Of all of us on here I only know of one other person other than myself who had a miscarriage. The others that had success in getting pregnant have gone on and not had issues. The lady that I have become good friends with on here had her twins, they were early but healthy.
The most important thing to remember is you WILL get pregnant, and you WILL have a baby, it just might take longer than you would hope. But it will happen for you. And to be honest the support from this group has been wonderful for me. There were times I thought I couldn't get through some of it, but being able to talk to others on here helped me get through the hard times and move on and keep on trying.
Don't hesitate to ask any question, I've been at this a long time, and have been through a lot so hopefully I can answer anything you might come up with.
 
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beccarn09 replied to CEB85's response:
I keep telling myself..I Will be ok...I know it is very important to stay positive. I have always been regular with my periods. But I am 26 and was on the pill for 8 years, mainly because my mother knew I was in a serious relationship in high school and wanted to make sure I was going to be a teen mom..I asked her about anyone having this in my family and she is not aware..So i guess I am just that one wierd statistic LOL. I work in the emergency room as an RN. so my job is very stressful and we work 12 hour shifts...I was concerned at first about maybe being to stressed all the time. I know stress on the body can have a lot to do with how your body responds to fertility medications. I think my biggest concern is what if the clomid doesn't work, and we have to try a nother form? We just bought our first home, and I just can't imagine how much all of those treatments cost. Don't get me wrong we would do anything to have children but I know some people spent thousands and thousands of dollars. It really worries me. I know I shouldn't think that far into the future. LIke I said I think since I was just diagnosied, i have so many thoughts in my mind.
Thanks for responding to me and helping me through this. I agree it feels great to know that I can "talk" to someone about all of my questions who has been through it. My mom and mother in law just say don't worry it will all be ok, but they have never had any problems, so its nice to know I have you!! Thanks again.
 
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CEB85 replied to beccarn09's response:
It WILL be ok. I know how hard it is to stay positive, trust me. I've gone from positive about things to depressed about things in 5 minutes and visa versa.
Even though they believe PCOS is genetic I know of no one else in my family who has it either. Guess I'm just the "lucky" one.
Stress can be your worst enemy when going through this. When I first started fertility treatments I was in a high stress job. There were days I'd just have a break down at my desk because I was just so overwhelmed between treatments and work... It happens. I try focus on the positive and find things that I enjoy doing to try to take my mind off of it. Doesn't always work but I try. Like, right now since my transfer is coming up in a couple of days I just lay in bed at night and think about it. I try so hard not to but I just can't help it.
One piece of advise one of my Dr.'s gave me is that we are allowed to feel however we want. Meaning, its ok if we're not thrilled when we find out a friend or family member is expecting. We're allowed to have our moments of anger and sadness. He and his wife went through the same thing, so he really understood how I was feeling. I have had so many moments of just anger about everything. There have been times my stomach has turned just hearing someone was pregnant. It happens and its OK. But I also tell myself I would never wish anyone to go through what we've been through.
As far as pricing, its only normal to think that far in advance, I know I did. When I first learned of moving onto injectables I knew it was expensive and it freaked me out. However, if you ever do get to that point, and you may not, many have had success on clomid alone. But if you do, many of the pharmaceutical companies have a "compassionate care program" My RE told me about it and we applied. Its very easy to apply and we were gifted a one month supply of medication for our injectable round with IUI. Well, one month worth to one person can last 3 months for another. Some women need a very high amount while most don't. We were told it was a one month supply, it ended up lasting me 3 months.
Also, some insurance will cover the medications as well. At first ours did not cover anything but I know a lot do. My DH got new insurance through work and while they don't cover very much they do pay a little and something is better than nothing.
 
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beccarn09 replied to CEB85's response:
Emotional roller coaster is right...Geesh. I feel like one minute im fine then the next i am cranky. I am usually a very upbeat person...last couple days not so much. I have heard the provera can do that too. Well I am still spotting..Mainly Brown. (Sorry to get descriptive), so I called my OB and she said that is enough to continue with our plan. So I go into the lab today for my FSH and Estradiol lab, and then she said to go ahead and start my clomid. I am very very very nervous about taking this medication. I have hear a lot of people say it makes you feel "Crazy" which is not good for me since I am in such a high stress job, and dealing with sick people. Also I never take medication so any kind of medication freaks me out. My OB did say that she thought it would work well for me. But I do Know several people who have tried it and it didn't. But I am going to stay positive...IT WILL WORK.
That is great to know that there is company's out there who will help financially. I am nervous about that too. I have ok insurance but I know they do not cover anything with infertility stuff. I really like my OB/Gyn..I know her because of working in the hospital, so I feel like i should at least give this a chance, I know you suggested seeing a specialist, but I think I will see after this month with all of the blood tests that I will be getting done (FSH, Glucose and Progesterone) and take the clomid and see what happens. I will keep you posted!! Once again thank you!! I get excited when I see you have replied to me
 
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CEB85 replied to beccarn09's response:
I'm so happy you get to start clomid. I'm praying its all you need to get the job done Are they starting you on 50mg?
When I took clomid it really didn't bother me very much until I got up to the higher dosage when the 50mg didn't work. I wouldn't say I felt "crazy" I was just really, really, moody. I can laugh about it now but at the time the smallest thing would set me off sometimes. Not all the time thought. It would usually be after a rough day at work and then I'd go home and something minor would set me off... Like the dog begging to go out the minute I sat down. Ha.

Good luck and please keep me posted. I'm praying for you.
 
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beccarn09 replied to CEB85's response:
Thank you!! I am on day 3 haven't taken it yet today...Waiting to eat lunch, it made me sick the first day but I think I just needed to eat some food with it. She started me on 100mg...Does that sound like a lot to you? From what I am reading a lot of people get started on 50. No real side effects yet, but I had a really hard time sleeping last night...I was up half the night...Can it cause that?? Please keep the prayers coming!!
 
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CEB85 replied to beccarn09's response:
Personally, I see nothing wrong with going to the 100mg. I know a lot of Dr. start off at 50 but I see so many needing to be increased, it almost seems like a waste of time to me.
I never had issue with the clomid keeping me from sleeping. I just keep myself up at night thinking about this stuff on my own.
Good Luck!
 
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beccarn09 replied to CEB85's response:
I got my FSH and estradil level back and they are all normal...finished Clomid yesterday..Have to get more blood taken on monday..Doing a 2 hour glucose test? I guess its like when you are pregnant? Then I guess we just wait and see what happens in a couple weeks?? This seems like its going to take forever!!!
 
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CEB85 replied to beccarn09's response:
A glucose tolerance test is no big deal. I think I had the 3 or 4 hour test or something, I just know mine took forever. Basically, they take a baseline blood draw. Then you have to drink this stuff. Then, If I remember right you have a 15 minute blood draw, then 15 minutes later and then a half hour apart until your 2 hours is up. I could be wrong on the timing but I think that's how it went for me. Mine was about a year and a half ago.
I know it seems like things are taking forever, but you'll get there. I used to be the most impatient person but after 2 years off all this I'm finally starting to learn to just go with the flow...
Good luck!
 
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KMcEntire replied to beccarn09's response:
I think it's a little different for everyone but typically there is less consistency with periods and ovulating. I've heard some people have trouble and then all of the sudden they get pregnant without fertility meds. Or they might needs meds with the first child, but other children come "naturally". It sounds like a great plus that you tested positive on you ovluation test! One thing that can help is charting your basal body temps. There are some great phone apps and websites that can help you keep track. The multiple folliciles can mean that the eggs are developing in your ovary, the problem just become getting them out of the ovary from my understanding. Sometimes in an ultrasound the lining of the ovaries are "pearl" like where the cysts are (which used to be eggs/follicles that did not ovluate).
Me (24)(PCOS) and DH (24) TTC our first for a year and a half. Tried Metformin, Femara, Acupuncture, herbs, ovarian drilling... looking at other options.


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