Advice on PCOS for a friend (Grad / Ticker Warning )

southernyankeegirl · December 2014

Hi all, I hope you don't mind me posting! I knew you'd all have the best info, and PCOS isn't something I have a ton of experience with as it wasn't our issue.

One of my best friends has been trying for a bit now (not quite a year, but no one is crying "infertility"). Her periods have gotten increasingly far apart since going off birth control - her last 3 cycles were 40+ days, and she's now approaching 70 days in this cycle.

Along with this, she's always been significantly overweight and battled facial and body hair, despite eating pretty darn healthy and exercising pretty regularly. Even when she trained and ran a half marathon, she was still considered morbidly obese by BMI standards.

I really suspect she's got PCOS, and I am not sure what info to give her. She knows my whole story, and I don't want her to think I am labeling her infertile and make her start worrying about the hell that is infertility as she saw me battling it. I know it's entirely possible if they can regulate her cycles that she'll be pregnant before too long, but I don't want her staying stuck in the never ending cycle.

I did suggest she should see an OB as she's past 60 days to end this cycle - she seemed really hesitant, as she's afraid of being dismissed with a simple, "Lose weight." Or being told there's a serious issue. I tried to tell her that she should ask for Provera to end this cycle, and if next cycle goes past 60 days too, maybe THEN consider starting PCOS testing and consider Metformin and/or Clomid (she is fully versed in the required monitoring, even if her OB turns out to be an idiot).

So... I guess this is two questions...

Any resources for someone in this position about possibly having PCOS? That isn't too scary? I suggested TCOYF but I think she's more likely to read some internet websites than a book at this point.

Also, anyone have an OB who is good in the Denver, CO area I can suggest to her? One who isn't a moron and isn't going to fat shame her would be awesome.

Thanks all :-)

***** Grad / Ticker Warning *****

southernyankeegirl · December 2014

@iPutKetchupOnKetchup‌ - nope, not a MilSpo. She's a high school friend.

You're probably right on not scaring her - I've already mentioned it, but I tend to research the crap out of stuff if you haven't noticed! She knows me well, though, so she probably isn't surprised.

Any ideas on resources that will be all like, "No worries, but if your period takes longer than 60 days to show up, you should see a doctor to jump start your next cycle"?

I know she believes me on that account, but she really doesn't want to think anything isn't completely normal. She's still hopeful for a BFP, and I don't want to burst her bubble but I also don't want her heartbroken and stuck in a hopeless endless cycle.

BunnyBerry · December 2014

Hm, since she's hoping for a BFP, I would start with the idea that there's the best chance of pregnancy when ovulation occurs no more than 3 weeks from the start of the cycle. So for women TTC, it's important to kickstart a new cycle with meds that basically make your body think you ovulated already so you can get a period and start a new cycle. Just planting a seed that an irregular cycle is not conducive to a BFP.

Then repeat if she has another long cycle. Then if she hits the year mark, add in that after one year of trying, only 15% of women will get a BFP naturally in the second year. So that it really stays her choice, and if that doesn't faze her, just be there for when she starts to get impatient enough to want to seek help?

It's easy for us to say, 12 months of trying, go to the RE. But I know that I was pretty content to keep trying for year 2 and year 3 because we still had something like a 5% chance of a natural BFP the 3rd year. It sounds crazy looking back, but for some people it's a really big step to think a natural BFP is never going to come.

Perhaps also recommend that she get tested for testosterone and glucose when she has her next annual physical or GYN appointment. That way, if bloodwork is off, you can combine that will irregular periods and body hair/weight issues to point out that she fits a diagnosis of PCOS, even without knowing if she has PC ovaries. And of course, encouraging her that PCOS is the diagnosis that has the highest success rates with treatment!

coaster102516 · December 2014

I am from Colorado so I can help with the OBGYN. Before I started seeing and RE, I went to consultants in OBGYN (https://consobgyn.com/). Loved them! I saw Dr. Gugenheim and she was amazing.

I guess if I were your friend, I wouldn't want too many suggestions. It is scary to think something is wrong and it may result in a better reaction if a doctor suggests and explores a diagnosis. I would recommend an OBGYN and leave it at that. I know I wouldn't want my friends going any further than encouragement and it would actually rub me the wrong way being suggested what tests and steps I should take in my health. Just me though.

catlover790 · December 2014

******grad/ticker warning******

This sounds very similar to my timeline although I really had no other pcos indicators other than the long cycles. I think the difference for me was that I didn't want to wait and keep hoping. I knew super long cycles weren't normal so I wanted a diagnosis/find out why.

I think I'd recommend reading the bump forums for some advice. If she is really not concerned with starting treatment at 1 year then she doesn't have to. I would also let her know that a RE can have a wait list (mine was 4 months but I got a cancellation) just so she's aware, I had no idea.

I'd also recommend seeing an OB for provera but I guess you can't really force her to do anything. Maybe she'd be less worried seeing her normal doctor who might recommend a good OB? Not to be depressing, but when I went to the RE they said our chance of conceiving on our own with pcos was something like 8%. That definitely made me upset but it also made me not want to spend time waiting before getting help. However, it's completely up to her so I wouldn't tell her those statistics; if she is starting to get worried she can easily find out all this from a quick internet search. GL!

Ashlee8809 · December 2014

I totally feel your friend. Her symptoms and experience sound so similar to mine (although, the most recent time I went off the pill, I didn't get a period for a year - stupid that I didn't do something about it earlier, I know).

I think the concerns about a fat-shaming doctor, and her fears that a doctor will be dismissive and simply say "lose weight" are very real. That's the situation I'm in now... Just wait and wait and try to lose pounds before my RE will really do anything. So I'd be interested as well if anyone has any experience or recommendations about this. With PCOS, even though I've been a vegetarian for years and think of myself as a healthy eater, I wasn't able to lose weight until I cut out sugar and white/refined carbs, and restricted my calories to <1500/day.

I agree with what others said. A simple urge to go see her doctor as her cycle is longer than 60 days. If she's actively trying to conceive, a jump start with Provera will at least give her another cycle to try instead of just waiting for something to happen.

LindseyM2012 · December 2014

The losing weight thing is a total catch-22 with PCOS! If she has high testosterone, she is likely not able to lose as much weight as a doctor may think she should. Testosterone keeps the pounds on! That's just what it does. So while some docs ( @ashlee8809 , I'm so sorry you have one of these but I'm so glad you've found something that works for you...KEEP IT UP!!!!) want a set weight or BMI before starting treatment, the syndrome that they're eventually going to treat may be keeping them from reaching that weight or BMI.

southernyankeegirl · December 2014

CaitOst21 said:

I am from Colorado so I can help with the OBGYN. Before I started seeing and RE, I went to consultants in OBGYN (https://consobgyn.com/). Loved them! I saw Dr. Gugenheim and she was amazing.

I guess if I were your friend, I wouldn't want too many suggestions. It is scary to think something is wrong and it may result in a better reaction if a doctor suggests and explores a diagnosis. I would recommend an OBGYN and leave it at that. I know I wouldn't want my friends going any further than encouragement and it would actually rub me the wrong way being suggested what tests and steps I should take in my health. Just me though.

Thank you! Will this OB fat-shame, or will they recognize that obesity can be more a symptom than a cause of irregular cycles?

And everyone else, thank you also!

@NariaDreaming - cancer is a touchy subject as her Mom died of metastasized uterine cancer. It could be a complete coincidence, or it could be her Mom also had irregular cycles and it's related. I'm not sure I want to put that idea in her head - she worries a lot about getting cancer herself. It's a hard line between wanting her to really be aware that it's dangerous to let her cycles go too long and also not making her worry. I think for now I'll just focus on how 60+ day cycles aren't likely to result in a pregnancy.

She's not temping and not currently using OPKs. Her husband is still rather opposed to "making it stressful" so they've just been having regular sex. My friend, however, would really like to have more control over the situation and is planning to start using OPKs secretly so at least she has an idea if and when she's ovulating. It drives her nuts not knowing when she ovulates or when to POAS (especially as her periods aren't regular).

I am not a good resource on temping and charting as I never did it. It stressed me out, and I had clockwork regular cycles so it was never really necessary for me. I think it would probably stress her out, too, but I think it's probably more useful for her. I will send her info for FertilityFriend, if she wants to try that.

And as far as "overstepping" or offending my friend, I talk to this girl about literally everything. EVERYTHING. We're closer than she is to her sister, and there's no such thing as TMI in our friendship. She really does like that I tell her things straight and that I have some knowledge on this stuff, so I don't have to worry about overstepping my role as much as simply not wanting to burden her with too much information too soon.

And she REALLY wants to get pregnant ASAP - she'll definitely seek help as soon as she hits 1 year, but mostly she's afraid that a doctor will blame her weight for the irregular cycles when she goes in to get checked out for the never ending cycle. She's tried really hard to lose weight and never been very successful, which is one reason I highly suspect a hormonal / endocrine issue.

southernyankeegirl · December 2014

lemonliz said:

syg, you might want to also encourage her to have her thyroid tested. It can also be the culprit of weight-loss difficulties, too. Especially when it's mixed together with pcos and other endocrine issues. And thyroid testing is useful for all number of reasons, not just TTC.

She says she did that a few years ago and it was fine. But as we know, these things can change.

catlover790 · December 2014

Grad/ticker warning ***********

It's great that she wants to try to make sure they have good timing and is willing to seek treatment if/when necessary. I would just add that maybe you could mention that OPKs may not always work well with pcos. I would have weeks of almost/pretty positive OPKs but I obviously wasn't ovulating. I temped too so I knew I didn't ovulate. It was very frustrating because every day I said "well maybe this is a real positive this time" but it wasn't. I also felt mad at myself for spending money on them too! Anyway, just another frustrating part of the long cycles :-(. It is so thoughtful of you to really try to help your friend and it is so great that she has you!

southernyankeegirl · December 2014

@rainbowbridge14‌ - thanks! I agree about the horrors of Dr. Google - that's one reason I am trying to send her specific articles rather than have her do her own research. I am having a hell of a time finding anything that says obesity is a side effect of PCOS rather than just pushing weight loss as a cure-all. Any help with that?

I also think she's scared to find out there's something wrong, but I know her well enough to know she'd be massively relieved that there was an explanation, both for the long cycles and her inability to lose weight.

What tests should I encourage her to ask for? I only know IF standard panels, but I know nothing about PCOS and IR and other endocrine testing.

southernyankeegirl · December 2014

Thanks guys!!!

She made an appointment - they didn't have any openings for 2 weeks, but better then than waiting longer. She's apparently on CD 76 of her cycle, so it's time to end this thing.

She told me she's really grateful I encouraged her to make an appointment, she's feeling relieved; and she plans to talk to them about what testing would be done for PCOS and the next steps if she has another endless cycle. Because while she's at only around 7-8 months of TTGP, two endless cycles back to back with long ass cycles in general would justify further testing in my mind. No reason to wait for a year in that case, not that anyone would be using the term "infertile" as much as "annovulation issues".

I will pass on the lists of early PCOS tests to her - thank you all so much!

LindseyM2012 · December 2014

So glad she made the appointment! It can be really difficult to make the first step onto a road that may end up with bad news. I really hope her doctor really considers doing testing. My OB didn't feel it necessary to until I'd been trying for a year (I went in at 6-7 months of TTGP). She ran tests for suspected PCOS right away when I had my first post-BC 60+ day cycle. I knew there was likely an issue so it was nerve-wrecking to go into that appointment and to get that PCOS stamp. Your friend is so lucky to have you as a support!!

BunnyBerry · December 2014

Based on the added info...I'd say that since she is so gung-ho about getting KU yesterday, definitely suggest temping for 3 cycles (and caling for provera if they go long). Then, if she's anovulatory, she can go straight to the RE, do not pass go or collect $200.

tumbleweed123 · December 2014

rainbowbridge14 said:

So glad to hear she made an appointment. I will look around for some good articles, but nothing comes to mind right away. So much of the crap about PCOS on the internet is wrong that I mostly turned to journal articles and the bump.

In terms of testing I'll list what I have had/needed (sorry some is repetitive):

FSH/LH/E2 - the LH is often higher than the FSH for PCOS ladies (usually a ratio of about 2:1)
Prolactin
TSH
2 or 3 hour glucose fasting test ( I only had to do the two hour)
Testosterone (Free and total)
DHEA-S
Fasting lipid panel - PCOS ladies can have some issues with cholesterol
Vit D- sometimes can be low in PCOS ladies
AMH- usually PCOS ladies have high AMH (over 3 often indicates PCOS)
17 OH progesterone- to rule our CAH which can look like PCOS but is different.

Not sure if an OB would run all of these, but an RE will (or at least many RE's) will. If I were here I would start with the Day 3 labs, androgens, glucose, and lipids.

***losses mentioned briefly*******

All this is right on. Go @bunnyberry and @rainbowbridge14 . I will say that an OB, probably won't run it all, but they might agree to at least TSH, Vitamin D, Testosterone and A1C. Those alone would be super informative. I'm average weight, yet all of my labs come back as classic PCOS. So, the only thing I don't present with is the weight issues. I will say that despite being thin, before I was put on Synthroid and Metformin, I had to basically starve myself and exercise 60 minutes a day to stay at my current weight. Now that I'm on Synthroid and Met, I can eat like a normal person and work out normal amounts and stay where I am weight-wise. It really is like night and day for me. So, I really believe that PCOS causes weight issues, not the other way around. At least for me that's how it is.

I have PCOS and was not diagnosed until I'd had two losses, and had been TTC for three years. So, with that in mind, I would have dropped to my knees and thanked you @southernyankeegirl if you had given me some tough love back in the day. I had three OBs who all missed my pcos, and it still makes me sad to think about all the years I wasted without a diagnosis.

I also wanted to add that OPKs aren't always reliable for PCOS ladies. They are accurate-ish for me, but I've read a lot of accounts where they weren't reliable for others with PCOS.

The other thing, aside from the lining issues with no AF, is that egg quality with pcos can be less great. My RE says that the increased testosterone expose can lead to quality issues. So, even if your friend can get pregnant with say, clomid or femara, unless her overall pcos is well maintained, she's still working with eggs that have been exposed to less idea hormonal environments. I wouldn't wish the consequences of that on anyone.

Sorry to ramble on...good for you for looking out for your friend! I'm so happy that she's got an appt.!

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