RE visit & PCOS question *potty mouth warning

bravegrace22 · July 2014

Today I had my first RE consult; it went..ok. We went with this doctor first because although fertility is one of her concentration/specialties, she is a general endocrinologist-if that makes sense. We did this for two reasons, 1. I have other issues going on other than IF and want to figure those out as well. I didn't want to get stuck focusing on the cause of IF and push aside possible other problems that could be exacerbated if we are successful. 2. My insurance does not cover anyfuckingthing IF related. A visit to an RE in a fertility clinic/office is covered as long as we don't do anything but chat-just another $40 copay. We are already looking at paying around $2500 for DH's CT scan (thankfully that will go towards our his deductible) so we're really trying to find ways to get any IF testing coded and loop holed into counting towards my deductible. We will still have to pay for things oop but it will at least help with future expenses. We had hoped that going to this RE would help to set off less red flags to the insurance since she's not 'technically' labeled as an RE. oh and 3. the office is the same building as my OB..not all the way in freakin boston.

That all being said, this RE ordered some more b/w to check antibodies and progesterone, said that she really didn't see anything as far as a thyroid issue-didn't want to start me on anything 'just to try it out' for fear of adverse effects which I'm kind of thankful for, and suggested that I see an RE at a fertility clinic so that they could do further testing if they saw fit and work in conjunction with my OB.

*mini rant* i am SO fucking sick and goddamn tired of doctors and ppl irl telling me to cut out stress because that's probably the cause. i'm stressed. i have been since before these things started happening and it's most likely not going away any time soon, so let's stop throwing that bullshit "diagnosis" at me just because you either have no fucking clue or are too lazy to put in the leg work to figure out what's really causing it all. I do yoga & work out, I get plenty of sleep, I eat pretty healthy, and I still feel like shit and can't get pregnant. I'm paying out my ass for specialist copays and testing, which is only adding to the stress, so please do your motherfucking job and not make me have to spoon feed you options as to what it might be after having to do copious amounts of research because you won't tell me anything other than, well X looked fine so no need to worry, oh you're still having symptoms? that's interesting.........and then not pressing the issue further. I feel like i'm working against every dr. i meet and i just want ONE to go "i'm sorry you're experiencing this, let's do everything we can to find the problem and get you a plan to fix it" wouldn't that be a beautiful thing!*end

SOOO...my PCOS question(s) is such: Is it possible to have PCOS and not have multiple cysts? How else would a Dr. diagnosis it without 'string of pearls' present?

It seemed as though the RE was leaning towards this still being an option, but looked hesitant to mention it. She asked a bunch of related questions and it got me thinking that I should have asked if that was still a possibility. I hadn't really looked any further into PCOS after my first ultrasound because the Dr. told me it was unlikely since there was only one cyst showing and I hadn't been doing as much research then so I sort of moved on from it.

Unfortunately, but optimisticly, moving on to RE at fertility clinic. and in the meantime any advice and help is greatly appreciated!

BethKate2 · July 2014

I'm sorry this doctor couldn't help you like you'd hoped. Hopefully the RE at the fertility clinic will be able to give you some answers and help you come up with a plan. Slight side-note, where are you located? In MA? If so, I could recommend my RE's office who has been great so far. They've got a few locations. Feel free to PM me.

I don't have any PCOS advice, but I'm sure others will.

Good luck!

TTCBabyJ · July 2014

I'm so sorry you have to go thru this it sounds so frustrating. Well when I was diagnosed with PCOS. My RE received my bloodwork back before she did my u/s and based on my AMH being 11 she concluded I had PCOS. But I also had the pearl necklace as well. Good luck!

thirtyninetoforty · July 2014

I had PCOS but never a string of pearls. Do you have other signs such as hair growth on your chin or your lower abdomen?

KimL725 · July 2014

That all sounds so frustrating!! Yes it is possible to have PCOS without the string of pearls. I did a lot of research when I was diagnosed, and although I do have a ton a cysts, you don't need to have them to have PCOS. They can diagnose through bloodwork, usually the LH/FSH ratio is off and testosterone and AMH can be high. Also, physical symptoms play a part (weight, extra hair growth, irregular cycles). It's really a combination of several factors. Hope that helps. Good luck with your testing, I hope you get to the bottom of it quickly!

catlover790 · July 2014

I'm sorry you aren't getting straight answers from your doctors. I hope the RE will really be able to help you more. My re mentioned that PCOS should have 2 out of 3 factors to be diagnosed. One was hormone levels (LH/FSh), second was symptoms, and I think the third was anovulatory/irregular cycles but I have to double check. Hopefully you get some answers soon! and I agree, the "stress" thing is so annoying! it's just another way to make it feel like it's my own fault for having trouble, I hate it!

shirleymaeby · July 2014

Gaaaaah!!! I hate the "stress" diagnosis. Such a bullshit cop-out. Also, I have read that only extreme stress can impact fertility but that there are no studies proving it is a cause. Our bodies get used to a certain amount of daily stress, so only huge spikes in stress patterns would have negative effects.

I don't have any advice to offer on PCOS, just wanted to express my sympathy with that frustrating (and stressful!) non-diagnosis. GL with the next RE. FX for some real answers soon!

LindseyM2012 · July 2014

catlover790 said:

I'm sorry you aren't getting straight answers from your doctors. I hope the RE will really be able to help you more. My re mentioned that PCOS should have 2 out of 3 factors to be diagnosed. One was hormone levels (LH/FSh), second was symptoms, and I think the third was anovulatory/irregular cycles but I have to double check. Hopefully you get some answers soon! and I agree, the "stress" thing is so annoying! it's just another way to make it feel like it's my own fault for having trouble, I hate it!

This.

A person does not need to have all of they symptoms to have the diagnosis. A syndrome is different than a disease in that a syndrome is a cluster of symptoms. Read this for a very doctor-y explanation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1069067/ This mostly talks about the high androgen levels and anovulation. For a less doctor-y explanation, read this: https://www.medpagetoday.com/Endocrinology/GeneralEndocrinology/42519 This talks about having two of three characteristics: excessive androgen production, anovulation, and polycystic ovaries.

All that to say: yes, you can have PCOS without multiple cysts. Sorry for the lengthy explanation, but I like being armed with research materials.

bravegrace22 · July 2014

so when i originally went to the OB about 12+months ttc and some weird hormonal symptoms she immediately suspected pcos and was the one who ordered my first u/s which showed only 1 (which i'm still in the midst of figuring out what went wrong with those results, but i digress). i had assumed most of what i was experiencing was thyroid related since i have a strong family history of hypothyroidism. i mentioned a few things that seemed to cross over to gyn issues and then she started asking me about other things and that's when i realized it could all be related. the main causes for her concern were: heavier onset periods that are now shorter in length than they have been in the past and a double period in may/june; acne throughout cycle; possibly not ovulating-looking more into this since i seem to have fairly reg cycles, but have no confirmation that i ever have; hair on head and eyebrows thinning, but hair on body getting darker-RE today checked lower abdomen and I was like "wouldn't know if it's growing more since i always shave from basically my clavicle down." lol; and my depression has been worse over the last year or so and really bad in the last 5 months. Even though my glucose, cholesterol, and blood pressure all seem fine; I have mentioned that I've been craving sugar lately which is abnormal for me since i'm all about salt. this seems to lean a little towards insulin resistance to me, but hey, i'm no dr.

i just looked through my last b/w results and looked up average levels for ppl with pcos..the only thing that seemed off was my DHEAS which is 246.8 ug/dL. And I don't have anything on AMH??

LindseyM2012 · July 2014

Based on the hair on head thinning and body hair darkening, it sounds like you have hirsutism which is caused by high androgen levels. The acne also points to high androgen levels. The second indication could be anovulation. I know you said you have no confirmation of ovulation but have fairly regular cycles. Have you temped to try to pinpoint ovulation or no? My AMH level was through the roof (I was told that 3 is around normal; my level was 46.2) so my doctors are thinking I may have never ovulated before. Keep in mind that the AMH does give an indication of you ovarian reserve, but it is only an indication (i.e. not a hard count of your eggs).

bravegrace22 · July 2014

LindseyM2012 said:

Based on the hair on head thinning and body hair darkening, it sounds like you have hirsutism which is caused by high androgen levels. The acne also points to high androgen levels. The second indication could be anovulation. I know you said you have no confirmation of ovulation but have fairly regular cycles. Have you temped to try to pinpoint ovulation or no? My AMH level was through the roof (I was told that 3 is around normal; my level was 46.2) so my doctors are thinking I may have never ovulated before. Keep in mind that the AMH does give an indication of you ovarian reserve, but it is only an indication (i.e. not a hard count of your eggs).

I have temp'd before but halfheartedly and this time around i am only in the beginning of my second cycle charting. my last one did not show a clear bi-phasic pattern, but I've also heard that you can show 'accurate temps' and still not ovulate.

can someone put some general info about AMH in layman's terms for me?

I am going to ask them to add that to this last b/w order.

Thanks so much for all the wonderful advice & help so far! Y'all are the best!

LindseyM2012 · July 2014

Here is a pretty good explanation of the AMH test and levels. I hope this is helpful!

https://www.advancedfertility.com/amh-fertility-test.htm

I have also had a difficult time temping because I often don't get several hours of uninterrupted sleep. I have also read that your temps can be misleading if there is a hormone imbalance, but I am not confident enough to speak on that. I wonder if temps can look like a "normal" cycle but the person not ovulate simply because of elevated androgen levels......???? A good question for the RE.

BunnyBerry · July 2014

So sorry about your poo-poo insurance and doctors who subscribe to myths about fertility.

It sounds like an RE is just what you need. I'm sure they will do the testing that you're hoping for, and won't need to rely on you to come up with possible ideas! And I couldn't imagine an RE blaming stress, unless a woman is underweight and such an extreme exerciser that the physical stress could be reducing her hormones and preventing ovulation.

Your RE can look at all the factors to diagnose PCOS. But realistically, the treatment may be the same either way, as they like to give fertility meds to women who ovulate anyways but are infertile.

The one thing only you can do that can make a big difference toward getting an accurate diagnosis and treatment plan faster is to temp really faithfully for a cycle or two or three. My clearly PCOS ovaries somehow have O'ed every cycle I temped (a lot of them) for the past 6 years, so that was helpful info to the RE!

bravegrace22 · July 2014

Thanks LindseyM2012, that was very helpful! I just called the RE's office to ask if they could add AMH to the b/w order. fingers crossed.

BananaPancakes02 · July 2014

I'm frustrated for you. You have PCOS without the cysts, I have never had a cyst, but have the syndrome symptoms: acne, excess hair in unwanted places, overweight, no periods without medical intervention. I do not have the insulin resistance (I almost wish I did as it would at least give a better answer of why my body does what it does). My testosterone was elevated, that's the only abnormal lab I've had so far. Good luck as you go through your testing!!

Katherine0 · July 2014

I think it is possible to have PCOS and not have cysts. My first ob told me I had it without even doing an ultrasound, which she was worthless so I switched, but then I went to the one I have now, and she told me she didn't see any cysts. BUT everything I've seen says that there are a bunch of "symptoms" of PCOS and I basically have everyone. If it was my guess, Like everyone else, I would say ya it's totally possible. I wish it was that easy to talk to everyone about IF. Everyone says "relax" bla bla bla. Doctors should know better.

Ashlee8809 · August 2014

Sorry to bring this post back, but to echo what others have said, you do not need ovarian cysts to be diagnosed with PCOS. You just need elevated male hormones (testosterone/DHEAS), ovulation issues, and you need to rule out other potential hormonal issues. My endocrinologist recommended hormone.org for info (she said it's run by the Endocrine Society).

I'm sorry you're going through all this stuff. I just got officially diagnosed with PCOS 2 weeks ago. It sucks.

And @BananaPancakes02, your post here sounds like I could have wrote it. It makes me feel a bit better to know there's someone in the exact same scenario.

bravegrace22 · August 2014

Ashlee8809- thanks for the added advice & support, definitely gives me more motivation to pursue this further!

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