I'm lucky really. This is only the second doctor that I've seen and he immediately told me I had PCOS.. a major case, he said. My first doctor
blamed anything and everything on my weight. I have been researching
PCOS for over a year and went into the doctor's office prepared with
articles and a letter to the doctor explaining my gyn history before the
last doctor and my medical records. I was prepared to do battle, but
didn't have to :)
Does anyone else here have PCOS?

Hi Dixi,

Yes, there are more of us with PCOS. I was diagnosed with PCOS last November and with Endometriosis this month. (the endo is a complication of the PCOS.) I am also starting to exhibit signs of type 2 diabetes. My doctor has me on a low carbohydrate diet and glucophage to help with the insulin resistance. I'm glad you found a doctor that you didn't have to do battle with. My current doctor was like that and it was such a relief to have him tell me that I wasn't imagining that there was something wrong. I was also relieved when he made the statement that birth control was not the answer to curing(helping) what ailed me. The last doctor I had been to had put me on a high estrogen birth control and that was it.

Good luck with your treatment.

Horse Lady (Joy)

"Something about the outside of a horse is good for the inside of a man." Winston Churchill

Hello Ladies -

Yes, there are some of us PCOSers here. It's nice to hear from new folks with this "lovely" syndrome. I've been under treatment now for just about 3 years. I take glucophage for the elevated insulin and spironolactone for the facial hair. I also use Vaniqa for the facial hair -- after 2 months, I think it's a good thing!

I have a doctor's appointment next week with a new internist, who doesn't seem bothered by how I'm treated for my PCOS, which is a good thing. I'll let you know how it goes. I'm a bit worried that he'll spaz when he sees that I have three people (my dad's dad, my dad, and my dad's sister) with Type 2 diabetes. Oh well.

Good to hear from y'all. Take care.
Lynn

Diximom I am so glad to hear you found a good Dr. they are few and far between when it comes to PCOS. I finally found one that wants to treat my insulin resistance. I have also done alot of research in the last few years so I knew what kind of answers I was looking for. Good Luck and keep us posted on your progress. Lynn, I am curious about the spironolactone. I am also on Glucophage and it SEEMS to have returned my periods but other than that I see no change as far as weight loss or reduction in facial hair. Did the Spirololactone help or is the Vaniqa better or would it be the combo of both?....And finally<ya'll really peeked my curiosity on some things> Horse Lady, what were your symptoms of Endometriosis? I mentioned last time I was in for blood work that my periods has gotten progressively more painful over the last 3 years since my twins were born and my Dr. said....have you ever been diagnosed with Endometriosis. I of course said NO...and now your Dr. told you it's a complication of PCOS which I wasn't aware of<UGH...does it ever end?> So, what I wanted to know is what symptoms did you have , and what test did he perform that lead to the diagnosis of the Endometriosis?.....ya'll take care and God Bless!

Tinkerbell,

My symptoms were long periods(7 days or more), severe menstrual cramps that couldn't be touched by over the counter pain releivers (I had a doctor tell me, when I was 17, that I could take four Advil at a time as long as I never took more than 12 in a day. Very helpful...not!) Over the last two years I started to experience severe abdominal, and back pain.

You do not need to have all of these symptoms (and I sincerely hope you don't.) One medical web site that I read said that some women have this problem for years and experience no symptoms. In these cases, it is usually diagnosed because the woman is unable to get pregnant and the doctor has ruled out all other causes.

The bad thing is the only way to diagnose endometriosis is to have an exploratory Laproscopy. On the up side, the doctor can treat the endo during the laproscopy and you don't have to have two surgeries. I had mine done Feb. 23. It's an out patient procedure and the incisions are very small. I have a small line in my belly button and a small scar on my lower abdomen(the scar is because my stiches pulled out, normally there are only two thin 1 inch lines). There are several sites that have more information about this procedure and all of the Endo sites that I have been on have references to laproscopy. The nice thing is that you aren't out of comission very long. I had my surgery on a Friday and was at work on Monday. Within two weeks I was riding horses again.

I hope I haven't scared you about this, but the other side of endometriosis is that if it is let go it can damage your internal organs. I have a lot of problems with adhesions on my intestines (very unpleasant and painful) and scaring on my right fallopian tube(decreasing my chances of getting pregnant, as if pcos on its own wasn't bad enough.) The earlier you catch this problem the better off you are.

I would seriously discuss this with your doctor and find out how serious he was about his comment that you may have endo. The other thing I suggest is that you go online and surf for information. I am putting in a few sites that I have been to. I know that reading about, and understanding what endometriosis was helped me to cope.

www.endometirosis.org
www.centerforendo.com
www.pelvicpain.com -- this site was a private doctors site but it has video clips and pictures that may be helpful, if your into that sort of thing.(My biology interest at its worst.)

Most of all good luck and take care of yourself.

Well, Tinkerbell, the spiro had helped a lot. I no longer felt the need to shave my face every other day. I can also go pretty much a whole week without needing to shave my legs (and I have lots of nice dark hair).

However, spiro can make you have breakthrough bleeding at high doses. I started low, came off it for a while, and then re-started at a higher dose. At 100 mg twice a day, I ended up bleeding every two weeks. Ugh. Brought it back down to 50 mg twice a day, and have been fine ever since.

The Met may help a bit, the spiro a bit more, and the Vaniqa is definitely wonderful! I just had my follow up with the derm yesterday. They told me I'm the first person that has been on it who has returned for follow up. ( I was also the first person with PCOS that my RE treated that wasn't trying to get pregnant!) Anyway, they're thrilled that I'm happy with it. I did a little test where I plucked one side of my face and continued to shave the otehr. The plucked side was so smooth for so long, I didn't mind plucking the rest out, even if I do get some ingrown hairs. It seems that the hair growing back in isn't at thick or coarse, but I'm not positive about that yet. Give me another few months for that one. Also, when I do pluck, it seems to come out a lot easier than before.

Couple of notes. You can't use spiro if you're trying to get pregnant as it may harm the fetus. It can also give you breakthrough and low blood pressure. The Vaniqa is a bit expensive (I shopped around and got it for $45). I had initially been told I would use a tube a month. I'm still using the same tube that I bought in January. It's sort of a water/gel/cream thing, so a little goes a long way. If you put it on right out of the shower, it might sting some, as well as if you put it on over pimples or other open areas, but it's not too bad.

Horselady - I didn't know that endometriosis was a complication of PCOS. I know they can co-exist, though. can you provide me with more info? I have a friend with what sounds like both. Thanks.

Hope the rest of you are fine and dandy, and enjoying early spring wherever you are (I'm beginning to think that spring isn't coming to Rochester this year!)

Lynn

Hi Lynn,

I am pasting in something that I had messaged to Tinkerbell that my doctor had told me. :

My doctor explained it this way: PCOS causes your body not to menstruate regularly by thickening the outer membrane of your uterin lining. When you finally do have a period, you have built up more than the normal amount of fluids. This excess of fluid can cause some of the endomerial material to backwash through your fallopian tubes into your body cavity. If some of the endo cells survive and implant on your ovaries, tubes, etc. you have endometriosis.

If I remember correctly, I think my doctor said that higher levels of testosterone is what causes the thickening and delayed periods. Its been a few months since I had this discussion with my MD.

Obviosly, not all people with PCOS end up with endometriosis, just like not all people with PCOS have ovarian cysts. But from what my doctor explained, its easy to understand why we would be more likely to get it.

If your friend hasn't been diagnosed with either, my suggestion is help her find a good doctor(an Infertility Specialist if you can find one) that listens to her.

Thanks ya'll. Your answers were very helpful. Sometimes I wonder<since I am finished having kids> if it wouldn't just be easier to get a Do-It-Yourself manual hop up on the kitchen table with some salad tongs and a mirror and just pull it all out! Kidding aside I do wonder what it would be like to just be a hormonally normal woman<if there is such a thing>? I am making a Dr.'s appointment for after spring break to go have a nice long chat. Oh, and Lynn...as for Spring coming to Rochester...I don't think its coming to North Alabama so I know its not coming to Rochester....LOL. Ya'll have a good day and God Bless.

Wendy

Glad to be here!
 

I'm new here and very glad to see the information so freely shared. Thank you!!

My Dr. sent me to an endocrinologist who is testing me for PCOS and put me on the SugarBusters diet.

I have many relatives with heart problems and adult onset diabetes so my weight issue bothers me knowing that it contributes to my health and the already strikes I have against my health.

I've asked the endocrinologist about losing weight with this and she said the important thing was to get healthy and eating healthy. I really want to lose weight, though!!

Has the weight come down for anyone diagnosed with PCOS? Any advice?

Thank you!!

Welcome SolShine,

I'm relatively a newbie here also.

You asked if anyone has lost weight with PCOS and the answer is yes. I have managed to lose about 20 lbs. since I was diagnosed in November. I attribute most of my weight loss to glucophage, my low carb diet, and exercise. You may want to disucuss glucophage with your Endocrynologist if she hasn't already mentioned it. It seems like most of the posts I have read here mention glucophage or the other new drug that is used to treat insulin resistance.

There are some really great people here that know a lot more about PCOS than I do and have been diagnosed with it longer. If you have questions, there is usually someone who knows something about it or can point you in the right direction.

Horselady - Thanks for the info about PCOS/endo. I wasn't aware of that. I'll forward the info to my frined.

Last week, I had a follow up dermatology app't. She's thrilled that the Vaniqa is working, and so am I. Now all I need to see here once a year for follow up.

I also had a physical with a new doc. Saw him in Jan. for illness visit and was worried that he wouldn't deal well with how I'm treating my PCOS. He wasn't, which was a thrill (the doc I'm leaving was less than supportive about me taking glucophage). I had the physical, and didn't even get a weight lecture (wow!). He was pleased that I've essentially maintained my weight over the past 3 years. He also seemed pleased that I'm a "well informed" patient and seemed ok when I explained how PCOS works, since he really doesn't know. Now, all I can hope for is the the labs come back ok (Please let me have a good cholesterol level), and that my BP goes down (which could be job related). I don't want to see this guy too much......

Hope the rest of you are well.

Lynn

Hello everyone...been too long. Welcome to the newbies...

Hope everyone is doing well...

I on the other hand is not doing too well. Most of you know I was going through infertility treatments..well, I stopped them two months ago. We needed a break..were purchasing a new home, living with my MIL in the mean time, andeverything was too much. My sister who is 21 and newly married just announced that she was pregnant when she really didn't want to be, that was the last blow. So, we took a much needed break.

Well..my RE stopped the Metfromin, said it wasn't helping me at all so it was pointless for me to continue it. I disagree.
I have an appointment this Wednesday because I need to discuss my hair. It's falling out. I am not sure if it's falling out, breaking or just thinning. Many hairs on the top of my head are "broken", they are short, not sure if this is hair that is growing back after falling out, or if my hair is just thinning. I know that "male pattern baldness" is a symptom of PCOS. I mentioned this to him months ago while I was undergoing the infertility treatments but he explained that while I was undergoing treatments I could not treat the hair problem. So, I just hoped it wouldn't get worse.
Well, it has. It has gotten worse, where everyday is a bad hair day. I am sure most people who look at me would never notice, but I do. And it's effecting me deeply. I used to have beautiful thick hair. Now, it's thinning..and I am scared to death.

I know this sounds completely vain, but if I can be honest anywhere, it's here. I would rather have my hair and not develop hairloss then be able to get pregnant. Is that horrible? It's the truth. It's hard enough to deal with all of this stuff but to have to look like a freak, not only feel like one is a nightmare come true. I am seriously thinking of giving up the infertility treatments anyhow. I am fighting my body and nothing is working for me. Each month it was a nightmare with another problem developing. There are certainly other ways to pursue parenthood, and I may just end up along that route.

Anyways...does anyone else suffer from this? When I was first diagnosed, 3 yrs ago, this was not an issue. Now it is. I want to go into the appointment equipped with info and ideas. So far, nothing.

If anyone has any advise, info or ideas, please let me know as soon as possible. I am scared...

Thank you.

Jenniffer I have never had this problem<so far> but, it sounds to me based on what you said that you might need to look around for another Dr. Sometimes they just get so busy that they don't focus on you like they should. I have had 3 kids, one boy and twin girls, and I have had PCOS since I was about 17. I am 31 now. I of course didn't know it was PCOS until I was trying to get pregnant the second time around<the twins>. And even still after I found out about the PCOS and went through fertility again which resulted in the twins I didn't know about Insulin Resistance until I did my own research on PCOS. I have been on Glucophage for the Insulin Resistance for about 5 months now. I really do not see a difference except my periods have returned. But, I haven't lost any weight. As far as it helping my fertility thats not an issue for me because I am finished having kids and I have had my tubes tied. I just have to say DO NOT give up. At least not until you are really sure your finished. But, I think a good route would be to see another Dr. Be happy for your sister! And while your taking a break from the treatments relax. Then when YOUR ready move forward. I feel for you....it's such an emotional roller coaster. There is nobody that understands except someone who had been there. Keep me posted. I assume you have but it's important enough for me to ask....have you done your own research online? If not, let me know and I will send you every piece of info I have found or will find!........God Bless.....Wendy.

Hi Jennifer,
 

I don't know if what I have to add will help or not but here it is. I have a very good friend that had extreme hair loss very young(17). Her's was a reaction to birhth control. My friend used Rogaine for women. I realize that you cannot use this while you are trying to get pregnant, but you might be able to use this while you are on your break right now. The other product that I know of that is suppose to work very well and can be used all of the time is NIOXIN. I used this product for a while because I have very fine hair that breaks easily. There are testimoials that NIOXIN can prevent hair loss. I'm not sure how much faith I put in these, but I did notice an improvment in my hair while I was using this product. NIOXIN is a line of hair care products and you may be able to look up information on-line about it. Its not cheap if I remember correctly, but if your like me, sometimes spending the money is worth it if it actually helps you feel better about yourself.

The other thing that I have heard is that medications and hormone fluxuations can affect your hair. If this is the case, now that you are taking a break from trying to get pregnant your hair may imporve some on its own.

In the mean time, try not to let it make you depressed. Being down about this kind of thing only makes things worse. I know, I have beeen battling depression for the last few weeks. I am 29 and going through medically induced menopause to try to cure endometriosis. On top of that my husband is having a hard time with my infertility issues and I lost my job last Thursday. I just keep telling myself that this is God's way of making me strong.

By the way, I think Tinkerbell is right. You need to try to find a better doctor. I have finally found a wonderful doctor and it has made so much difference not only in how I am treated but in how I feel. I have a lot more hope that there will be a baby some day.

Best wishes,

Joy

Jenniffer -

I'm sorry to hear that things are not going so well with you right now. I think you and your husband made the right decision to stop treatment right now. I'm told that treatment itself is quite stressful, plus you have other living arrangements to add to it all.

I have to agree with Tinkerbell and Horselady -- you might want to consider looking for a new doc. You need to find someone who will work with you, not just for you. And, sometimes the Met doesn't show any effect for 4-5 months. Stopping prior to that might just mean that it hadn't worked yet. And, if you've been on it longer, and still didn't see any effects (return of period, drop in insulin level), it might be worth trying a higher dosage. I had some effect at 1500 mg a day, but not good control of my insulin until I started taking 2550 mg per day. Or, you may be one of the women that don't see any effect from Met at all. If that's the case, you may want your doc to prescribe Avandia or Actos. These often help women who didn't get help from Met.

As to the hair loss. The IF treatment may be part of it. If so, you're in for a long wait...it takes hair 4-5 months to re-grow, and hair doesn't all grow at the same rate. However, if it's still breaking off and falling out and you've been off IF treatment for a while, it may be your hormones. Specifically, testosterone. Test. tends to be high in those of us with PCOS, and that's why we grow facial hair and lose our periods. It can also cause male pattern hair loss in women with male pattern loss in their families. It might be worth checking your testosterone level. If it's elevated, you could try Met again. If Met ultimately gets your insulin level down, the testosterone should go with it, and then you should notice an improvement. You could also use Aldactone (spironolactone), which helps block the testosterone at the hair follicle. This will possible do two things...it will help decrease the quickness with which your facial hair (if you have it) grows. It will also block testosterone from binding to the hair follicles on your head, and thus prevent your hair from falling out. It's worth checking out. Only catch is, you can't take Aldactone if you're trying to get pregnant.

I know this is long, but I hope it helps you. I wish you and your husband all the luck in the world.