PCOS questions - long

[Twylla]

I did a search and looked through many of the PCOS threads, so now I know a lot more about it than I did before. But I didn't want to ask about myself in another thread, because I didn't want to cause a hijack and have OPs lose out on information, so sorry this is a tad repetitive.

I went off BCP last November. My cycles have been: 141 days, 63 days (I think), 41 days, and 29 days. Today is CD64 for me, but I think AF may FINALLY be here and make this CD1.

My cycles were relatively normal pre-BCP. I don't remember them being longer than a month or so. Now they're long, and very unpredicatable. I am charting, but they're not online, and work funny shifts, so I'm not really confidant in my temps. We're not TTC yet, but want to start in December.

Also, I've recently changed my exercise habits and I've taken up running. But this was several months after going off BCP.

The "symptoms" I have are: long cycles, some acne, hair falling out of my head (in clumps!), some hair above the lip and on my chin that I didn't notice when I was on BCP, and I can't see any O-ing in my charts.

So, although I need to call my doctor tomorrow for an appointment, any thoughts? Should i specifically mention that I suspect PCOS? TIA!!!

[jennylou]

You should mention possible PCOS. Hair falling out could also be a sign of a thyroid problem.

[LMG462]

I also agree with Jennylou on the 2 possibilities. I don't doubt there may be other causes as well. I hope you get some answers soon.
Take care,
Liza

[Twylla]

Thanks Jenny and LMG. I was also wondering about my thyroid, so I'll be sure to mention that as well. Hopefully I'll be able to see my doctor soon, I'd like to figure this out befoer TTC. Thank you!

[tlew12778]

My cycles were really normal pre-BCP as well... basically every 28 days give a day or 2.

My GP actually told me last week that the fact that I took the BCP for 8 years could have contributed to the PCOS. Basically she said that I gave my ovaries an 8 year rest and they got really used to resting essentially... now they're lazy :(. I have never read about the correlation online so I don't know if what she said was true or not even though I can see it making sense. Basically she says they are pissed at me for making them work themselves out every month now :mad:.

[Twylla]

Hi Tiffany, I've been following along with your story, but lurked (I'm bad!) since I didn't know of anything constructive to say.

How funny that BCP does that, though it does sort of make sense. I suppose you could compare it to putting on a cast for several weeks, then the muscles deteriorate a bit without having to work at all, right? If PCOS can become a side effect of BCP, it should be mentioned on the drug's package. I wonder if that would make people think again about it. I'm not sure I would've NOT gone on BCP if I knew about PCOS, but it might affect some peoples' choices.

Anyway, I'm trying to get in touch with my doctor. I called the office for an appointment for myself, and DH as well, but the receptionist isn't sure if DH can be taken on as a patient. :( Appearantly he may have to go somewhere else. but I'm not very comfortable with us going to different docs. I'd rather it be the same doctor, especially with TTC not TOO far away.

When I know what the cause of my symptoms is, I'll update this thread.

[tlew12778]

Yeah, if I had known that, I would never have stayed on it as long as I did. And I'm going to make damn sure that my future daughters (if we have any) don't stay on it for long periods of time either.

I hope you can get the answers you are looking for soon.

[jennylou]

That's awful strange for your Dr to say that about the pill. Many Drs will prescribe the pill to PCOSers when they aren't ttc because they say it saves their eggs. Just goes to show what one Dr says, another can always disagree with. I for one, get all whacked out on the pill, so I won't ever be returning to it.

[tlew12778]

Actually, my GP and my gyno both say I should go back on the BCP. I will, in fact, be starting Diane 35 once AF shows. It's not to "save eggs" though -- it's to give my ovaries a break. The idea is that once they rest up, they'll go back to being fertile again. I asked specifically about this bc when I went off the BCP last October, I ovulated immediately and continued to do so for 7 months/cycles. The GP explained that ovulation very frequently returns with a vengence right after BCP, then can taper off again in women with PCOS.

[Twylla]

Isn't it amazing just how different we all are? I wasn't panicky after my first cycle was really loooong, but after I had a shorter cycle and then it was long again, I started to become concerned. I really hope I don't need to go back on the pill though, I hated it.

I spoke with the dr office today, to the receptionist I've know my whole life, and she said of course they'll take DH on as a patient, thank goodness! We both go in for appointments tomorrow, so I'll update then... i wonder if I'll hear something totally different?

[cc8]

"The "symptoms" I have are: long cycles, some acne, hair falling out of my head (in clumps!), some hair above the lip and on my chin that I didn't notice when I was on BCP, and I can't see any O-ing in my charts."

I had similar symptoms before I was diagnosed with PCOS when I was in college. My RE put me on BCP - which

*brought on a period each month (even though these periods were 'fake' periods because I was not O-ing)

*decreased the hirsuitism (hariness) - the hormones in the BCP will do this

When it came time for me to TTC, we suspected I would not O on my own (correct!) and so we started other treatments (clomid, Follistim).

Hope this helps; basically, I don't think it's weird that MDs put PCOS'ers on BCPs.

[tlew12778]

The other reason to put PCOSers on BCP is bc it's absolutely necessary that a women shed her endometrial lining every now and then as too much build up puts you at increased risk for endometrial cancer.

[Twylla]

I'm back from the doctor. He said that most of the time with PCOS there's weight gain, which I don't have. But sicne that doesn't rule anything out, he's sending me for a vaginal ultrasound. My appointment might ot be for 6 weeks, but at least this way we're moving toward figuring something out.

He also said that since I'm obviously not ovulating, depending on how things go with the u/s, he may prescribe clomid when we start TTC. He sees no point in waiting if it's clear I won't ovulate on my own. So while I'd *prefer* to be able to ovulate on my own and concieve that way, I'm glad he's not in the frame of mind of making us TTC for a whole year first. (I'm 24 BTW, and from what I've heard, a lot of docs won't treat infertility right away)

One thing he mentioned was that AFTER we've completed our family, and IF the symproms persist (assuming at this point that we're dealing with PCOS) he would consider an operation to remove part of my ovaries. Now, we didn't talk too much about this since it would be about 10 years from now, and who knows what might happen between now and then, but i'm truely not crazy at all about the idea. I mean, surgery is a big deal, and we're not talking about an annoying hangnail or something, these are my OVARIES we're discussing. But, I'm glad that he understands PCOS and it's affects. At this point, I'm not even considering the surgery, I'm hoping this can all be recified sooner. And if wacky cycles, etc are the worst part, I can go on the pill again after babies, kwim?

Anyone else have thoughts about this operation? Have you heard anything like this before? Any strong opinions one way or another?

[tlew12778]

There are a couple PCOS related operations. One is ovarian drilling, one is an ovarian resection (I think) and one is a hysterectomy. Personally I don't think I would do any of them. I mean, they use first two are used to try to get you ovulating again (in extreme cases). The last is obviously to stop ovulating entirely and to remove the hormonal imbalance issue.... the main issue I think I would have with the last, is that they are not 100% entirely sure that the excessive androgen production is from the ovaries. Androgen is also produced somewhere else (pituitary gland?) but I can't remember where right now. Plus, a hysterectomy is so permanent, ya'know?

BTW, not all women have weight gain. I don't. I am 5'0" and I weigh 100 lbs. They dx'ed my PCOS based on the transvaginal u/s and the blood tests. At the point that I had had both done, I was only like CD25 so I wasn't even really late with O per se.

[Twylla]

Tiffany, I thought you were a smaller girl. I'm just "healthy" I guess. 5'4" and about 140 lbs. So not nearly heavy enough for me to think I'd have a ehalth problem b/c of weight.

I'm really uncomfortable thinking about any surgery as well. My dr said something about removing part of the ovaries, but we didn't really talk in depth about it since we're so far from making that decision. Removing anything is a big deal, but anything dealing with procreation does seem really permanent. Who knows when I might want another child? For now, I'm just wishing my cycles made sense!

[KaliLily]

My GP actually told me last week that the fact that I took the BCP for 8 years could have contributed to the PCOS. Basically she said that I gave my ovaries an 8 year rest and they got really used to resting essentially... now they're lazy

I was diagnosed with PCOS almost 9 years ago, in my mid-20s. Since then I've done a LOT of research on PCOS and never came across the theory that BCPs could be a contributing factor. In fact, everything I've read in the last few years points to insulin resistance being the contributing factor to PCOS.

PCOS tends to start in the early-mid 20s. My cycles weren't abnormal until my Junior year in college, when I'd get AF about every 3-4 months. I went from OB/GYN to OB/GYN for 3 years trying to find out what was wrong with me. Finally, the 3rd one was the charm. He ran the appropriate tests and concluded that I was in the early stages of PCOS (I was 23). I was told that I was lucky to catch it early on, before my ovaries could become deformed with cysts. My doctor at that time said that most women don't learn they have PCOS until their late 20s/early 30s when they are ready to have a family. They either overlook the abnormal cycles (i.e., WOOHOO! Only 3-4 periods a years!) or are on BCPs at the time the obvious symptom of irregular cycles would show. If I were on BCPs back in my early 20s, I wouldn't have thought much of the other overt symptoms (light hair on my abdomen, breasts and upper lip).

The best advise I can give to those with PCOS is relax, eat healthy and exercise. I managed to restore ovulation w/o fertility drugs when I was working out regularly, eating healthier, and taking Metformin.

P.S. If you are run through the gamut of tests for PCOS, enjoy the internal ultra sound. I almost burst out laughing when I saw the technician take out a long wand and place what looked to be a condom on it! :D

[Twylla]

Kim, thanks for the insight, I really appreciate that! I'm trying to think the "Woohoo! Not many periods!" route for now, until we figure things out, but it makes sense that PCOS could be overlooked that way.

Thanks for the advice. I eat pretty well, and I'm training for a marathon this December, so the exercise is definately there right now! What is Metformin? Is it a drug, or more like an herb/vitamin? TIA!

Now I'll be watching for the "condom" when i go for the u/s! lol!!!!

[KaliLily]

What is Metformin? Is it a drug, or more like an herb/vitamin?

Metformin is an insulin sensitizing drug (brand name is Glucophage). It is used for patients with Type 2 (?) diabetes, however, in studies it was found to restore ovulation in many women with PCOS - even if they didn't test positive for insulin resistance or diabetes. That then led researchers to link PCOS to insulin resistance. This was a HUGE breakthrough in the study of PCOS. The FDA hasn't approved it for use in PCOS patients; however, I've found most doctors will prescribe it once PCOS is diagnosed.

Studies have also found that where Clomid alone did not work for PCOS patients, Clomid plus Metformin often did.

I hope everything turns out well for you! Enjoy your u/s ;)

[KaliLily]

A while back I picked up the book "Living with P.C.O.S." I found it very informative. It's written in "layman's" terms and is pretty thin book. Medical degree and long attention not required!

[tlew12778]

I just bought this (http://www.medifocus.com/guide_preview.php?guide=ND014&PHPSESSID=b8696d086328af0742400a2bf61b680e) as an e-book and it's really informative IMO. I like how it has links to all the medical journals and stuff so you can read more scientific articles on PCOS. I also like how you can get the updates for free for the next 12 months.

Yes there is a lot of talk about insulin resistance being a contributing factor... but I have read that actually only a small percentage of women with PCOS are insulin resistant. Sarah pointed out earlier that she was not actually insulin resistant but borderline which I guess could be the case for many women, but it's not necessarily the case for all women with PCOS I am sure.

Oh yeah, the condom thing is funny. They even squirted in some u/s gel into the condom before putting it on the wand :p.

KaliLily - Are you TTC? Are you charting? How has the metformin affected your charts? I only ask about TTC bc I think that most drs will not give metformin unless you are TTC. I get the impression that most just say to take the BCP if TTA.

[KaliLily]

KaliLily - Are you TTC? Are you charting? How has the metformin affected your charts? I only ask about TTC bc I think that most drs will not give metformin unless you are TTC. I get the impression that most just say to take the BCP if TTA.

I haven't been recently, but will be starting soon. I went off BCPs about 4-5 years ago because DH and I were in a "let's see what happens" mindframe. At the time, I was trying to lose some weight I'd put on the year before and was having the hardest time b/c I'd get hungry right after eating a reasonable size meal. I did some research on Metformin and found it could help, so I went to my DR with a 2" stack of research from online medical sources. I even highlighted the parts that applied to me. Before I could get to my research, though, he said, "Metformin? Sure, I'll give you that." :) My new doctor just advised that I should probably stop taking it when I am pregnant b/c the benefits haven't been shown to outweigh the risks to the fetus in his opinion.

I wouldn't say the Metformin has made me lose weight - I haven't had the best esting habits the last few years - but it has helped stabilize it, and I'm not hungry all the time like I was before. Plus when I am eating right the pounds seem to come off easier.

[Sarah051504]

Sarah pointed out earlier that she was not actually insulin resistant but borderline which I guess could be the case for many women, but it's not necessarily the case for all women with PCOS I am sure.

Well since I was lurking and saw I was mentioned I thought I would add my $.02.

In my case, I was Dx 5 years ago and I wasn't IR. So my Dr. started me on BCPs and spiro. Fast forward to last year, I switched Drs and she ran a complete blood work up. I wasn't officially IR but was close and her opinion was if we did nothing I was garenteed to become IR and eventually get diabetes. We decieded to start metformin. I had read up on it and pretty much knew that when we started TTC I would most likely go on it and I had also read about the of so unpretty side effects untill your body adjusts to the med so I figured I start now and get that "fun" stuff done with so I wasn't dealing with being sick and TTC at the same time. I think it's the best decision I've made.

I have to chime in about BCPs causing PCOS. I have to disagree but can see where someone can make the connections. A lot of women start BCPs in their late teens and early 20s, and go off of them intheir mid to late 20s in order to TTC. Well as KaliLily pointed out PCOS tends to show up right in that time frame so you might have had perfect cycles before you started BCPs but when you stopped they were messed up.