Diagnosing PCOS

[Hunter's Moon]

My sister was diagnosed with PCOS about a year ago. She has painful cysts, does not ovulate, etc. I know there is a link between siblings when it comes to PCOS.

 

I have always had irregular cycles. I went on the birth control pill about 2 or 3 years ago because of them. They were anywhere from 30 - 120 days long. They tested my thyroid while I was on bcp, and it came back normal.

 

I came off the pill in November and my first cycle off of the pill was 72 days, which I know can be normal due to coming off the hormones. I was on Ortho Tri Cyclen Lo which is a low dose pill.

 

I want to know if I have PCOS as well, but I do not know what tests to ask for. I do not want to go back on the pill because of the hormones, but if I am in for 60 day cycles again, I am not willing to do that since DH and I have to abstain until I ovulate.

 

Thanks for any help. I won't be able to answer until tonight since I'll be at work, but wanted to throw it out there.

[musicianmom]

You need a blood test to measure the levels of FSH and LH.

[justamouse]

When I was your age, I never had a regular cycle. Ever. Perhaps once every 6 months. Which is why when I stopped the pill at 19, I had no idea that I was pregnant until I was almost 6 months along.

 

After my first child, I started getting them more regularly, and with each subsequent child they came closer together. I still only have a cycle about every 45 days.

 

None of this has affected my fertility.

 

I have heard great testimonials of women with PCOS conceiving after going on a primal/paleo diet.

[Moxie]

My sister was diagnosed with an ultrasound. They were able to see multiple cysts on her ovaries. I have been diagnosed because of my insulin issues. I have no cysts on my ovaries. From what I understand, PCOS isn't a great name for this disorder because the cysts are a symptom that not everyone has. I was on metformin for a year and it really helped to shorten my cycles. I went off the met when I got pregnant and haven't gone back on. Low carb diet and cardio exercise has helped me greatly.

[Momof3littles]

Yes, there was a recent conference on endocrinology and PCOS, and experts actually agreed there should be a change in the name to reflect all of the metabolic issues surrounding it, and to reflect that cysts aren't even a necessary part of the diagnosis. They are still going to use the Rotterdam criteria. Not all doctors are up to date on what is needed to make a PCOS diagnosis; I personally suffered at the hands of an ob/gyn who didn't know what he was doing and denied that I had PCOS. For that reason, I'd recommend finding someone who is very up to date on PCOS, preferably an endocrinologist or reproductive endo.

 

WIth irregular cycles and a family history like that, I'd definitely explore the PCOS angle.

 

Some of my differential diagnosis included: LH, FSH, DHEA-s, progesterone, prolactin, androstenedione, free testosterone (a better measure than total testosterone, which is what my OB/GYN did), sex hormone binding globulin, estrodiol, thyroid panel. They ruled out things like Cushings, thyroid, pituitary issues. I also had a transvaginal ultrasound of my ovaries. My ob/gyn totally missed my diagnosis despite some markers of issues in my bloodwork and larger than normal volume ovaries. Once I was diagnosed by an RE (reproductive endo), I also had a glucose tolerance test with insulin levels. Many women with PCOS have some degree of insulin resistance; some believe this is the heart of the disease. Higher insulin levels screw with all of the other hormones.

 

I went through extensive issues to conceive my eldest, but my next two children were conceived with metformin (an insulin sensitizing med) and low carbing. I cycle regularly with metformin and low carb, whereas I went 9 months without ovulating even once when I came off the pill and didn't know what I was dealing with while trying to conceive my first born.

 

PCOS has health implications beyond fertility, including heart disease, increased risk of metabolic syndrome issues in general (hypertension, lipid issues,etc.), increased risk of endometrial cancer, increased risk of type 2 diabetes, and on and on, so it is definitely a good idea to pin that down.

 

Soulcysters is a great resource. There's a section over there on finding a doc, and that may help you find someone skilled in diagnosis. I'm hesitant to recommend the average ob/gyn unless you know they really are up to date on PCOS. I would try to find someone in your area who is known for PCOS expertise specifically, because unfortunately, a lot of women have their issues missed by doctors still going by old or incomplete or inaccurate info.

[happypamama]

You also need to have them check your thyroid again. Many doctors will tell you it's "fine" if it's between 2 and 4. If you're showing any signs of PCOS or fertility issues or other signs of hypothyroidism, many endocrinologists will prefer your TSH to be in the 0-2 range and will medicate to get it down that low. I highly recommend seeing an endocrinologist, not just a regular doctor.

 

Typically, they will do baseline bloodwork on day 3 of your cycle. It does sound like you could be a PCOSer, and you really need someone who can address that, not just for fertility issues but for long-term health.

[nandmsmom]

Labwork is not always helpful in diagnosing PCOS. In many cases it is diagnosed based on history. In your case, it would most likely be a positive diagnosis, from what you've posted. I will secon soulcysters.com for lots of helpful advice. I have had symptoms of PCOS since I was 12, but the diagnosis was not made until I made the connection 14 years ago when I was 30. My thyroid has always been normal, thyroid levels are only an indicator of the thyroid function not PCOS. You need to see an endocrinologist, and one that is familiar with PCOS, because many aren't. If you can find a reproductive endocrinologist, that will be your best bet. Most doctors are not up on the specifics of the disease. Do your own research and be your own advocate.

[wapiti]

Back when I was diagnosed about 13 yrs ago, there was a lot of disagreement on criteria, though the two common ones were elevated testosterone and irregular cycles. I think the LH/FSH ratio is helpful, though IIRC that needs to be drawn on cycle day 3.

 

There are a number of other things that have similar symptoms and should be ruled out (e.g. thyroid as mentioned above). Doctors are hit or miss - some have a clue, some don't. While I'd prefer an endocrinologist, they may be hard to find - my last one told me not to come back because I wasn't overweight and wasn't having irregular cycles (umm, wasn't having cycles at all on the mirena). If your OB is up on the latest research, I might start there for the basic bloodwork and ask for a referral to an endocrinologist, unless you know of another one. An ultrasound can be helpful but IIRC, lack of a string of pearls may not definitively rule out pcos. I've seen many an RE (reproductive endocrinologist) but they are hit or miss too and generally are treating folks trying to conceive rather than maintain metabolic health.

 

If I knew then what I know now, I probably would have been able to avoid a lot of treatments with low-carbing. LCHF is what will keep me off metformin, hopefully, if I can make it my new lifestyle.

[Stayseeliz]

Great advice above. I would look into PCOS for sure. I was diagnosed by an ultrasound after having many of the symptoms for years. I've success with metformin and low carb as well. 4 kids. I only had trouble getting pregnant with one of them.

[FaithManor]

Mom3littles gave great info! I'll just add that my sister was misdiagnosed due to the lack of cysts. She never made it to a reproductive endo - if you can get yourself to one, I highly recommend it - instead she found a wonderful family doctor that had a female physician's assistant working in his office doing a lot of women's health care. This PA really kept up on her journal reading and research. Not only did she conclude my sister had PCOS, but she also found that her intestines and colon were ravaged from undiagnosed food allergies - the MD ordered some scans and sis's digestive track looked like she'd recently had ecoli and yet hadn't! She took sis off wheat and dairy (sis isn't allergic to dairy, just at the time she was in such bad shape she couldn't digest the dairy adequately) and told her to go extreme low carb. It was dramatic how much my sister improved and how rapidly. PA told her there is a lot of evidence linked between PCOS and digestive problems. The one thing her PA always, always, always recommends in these cases is virtually zero grains, increased seafood, omega oil and D3 supplements.

 

The change has been remarkable!

 

:grouphug: I am so sorry you have to go through this.

 

Faith

[Hunter's Moon]

I still have to make my annual GYN appt., so I will see what she thinks. Hopefully she is knowledgeable, but also wise enough to refer me to a reproductive endo.

 

I have no pain whatsoever, so I fear that may lead doctors to dismiss me completely, but I want all the blood tests done because while DH and I aren't going to be TTC for a few years, it would be nice to get it all sorted out now and know what we are looking ahead to.

 

I do understand that PCOS and insulin resistance go hand in hand. I have been working on a meal plan to cut out grains, so will continue to do so.

[Mergath]

I was diagnosed based on my history and labs. I hadn't had a period in months at the time, along with other issues.

 

I didn't seem to have any fertility issues. Dh and I weren't using any kind of bc at the time because they'd told me I'd be nearly infertile from the PCOS. A couple months later, I was pregnant with dd. ;)

 

I'm on the generic version of Yas right now to treat the symptoms. Yas seems to work the best out of all the different bc pills. Whatever you do, don't get the Depo shot if you even suspect you might have PCOS. From my own personal experience and what I've read, Depo Provera makes PCOS symptoms a thousand times worse.

[TammyS]

I am not willing to do that since DH and I have to abstain until I ovulate.

 

 

 

Unless there is a specific reason that you need to abstain until you ovulate, you might want to look into better NFP methods. Specificly, I would be charting temps (which would also be helpful with your PCOS diagnosis, because it will give you an idea of your thyroid function), charting your cervical fluid (without reasonably good fluid, you are unlikely to conceive, even if you are ovulating), and investing in ovulation detection strips (buy them from the same places that sell to docs, wayyyyyyyyyy cheaper) which you can use daily to find out if you are about to ovulate (the hormone is only present for like 12 hours, so it's a pretty good thing to use because you can really pinpoint where you are, you can even use 2x day if you think you are close to ovulating). The strips would also help with PCOS because then you would know if you are ovulating at all.

[Hunter's Moon]

 

Unless there is a specific reason that you need to abstain until you ovulate, you might want to look into better NFP methods. Specificly, I would be charting temps (which would also be helpful with your PCOS diagnosis, because it will give you an idea of your thyroid function), charting your cervical fluid (without reasonably good fluid, you are unlikely to conceive, even if you are ovulating), and investing in ovulation detection strips (buy them from the same places that sell to docs, wayyyyyyyyyy cheaper) which you can use daily to find out if you are about to ovulate (the hormone is only present for like 12 hours, so it's a pretty good thing to use because you can really pinpoint where you are, you can even use 2x day if you think you are close to ovulating). The strips would also help with PCOS because then you would know if you are ovulating at all.

 

I do chart temps and cervical fluid, but even if the strips can detect within 12 hours, sperm can live in a woman's body for a few days. Yes, cond*ms are an option, but I really don't feel safe with that level of protection.

[Hunter's Moon]

I was diagnosed based on my history and labs. I hadn't had a period in months at the time, along with other issues.

 

I didn't seem to have any fertility issues. Dh and I weren't using any kind of bc at the time because they'd told me I'd be nearly infertile from the PCOS. A couple months later, I was pregnant with dd. ;)

 

I'm on the generic version of Yas right now to treat the symptoms. Yas seems to work the best out of all the different bc pills. Whatever you do, don't get the Depo shot if you even suspect you might have PCOS. From my own personal experience and what I've read, Depo Provera makes PCOS symptoms a thousand times worse.

 

Yeah, my sister experienced the worsened symptoms first hand.