Thin PCOS - the "most" challenging for drs??

barkley12 · 10-20-2008, 04:12 PM

Hi Ladies,

I haven't posted much on here...have been trying not to obsess so much over TTC so have taken a break from internet boards!! BUT, I'm really getting discouraged lately and wanted to see if anyone had any words of wisdom

I'm a thin cyster - 5'3", 102 lbs. ALL my bloodwork is fine, including ratios to indicate PCOS. But, I do have a slight string of pearls and a bit of excess hair in all the wrong places. No acne, cycles are a bit long b/c I always O on day 20 instead of 14, which is what my dr. says is the problem.

But, even doing 2 rounds Femara, 3 clomid, 2 IUIs, then lap surgery w/ all the customary diagnostic stuff (HSG, and even a tiny bit of ovarian drilling)....I just did a cycle of injectibles w/ IUI and nothing

so, all told it's been close to 1 1/2 years TTC w/ not ever seeing a +++.

Here's my question: I went to get a second opinion, and that dr said he thought thin PCOS patients were the MOST CHALLENGING of all. He said there are different egg quality issues than with regular PCOS, and fertilization is often a problem even with IVF. Has anyone heard this? this is discouraging

BTW...I am on met - 1000 mg/day for several months, but it doesn't seem to be doing anything.

darkblue · 10-20-2008, 06:44 PM

i have been mainly frequenting the ttc board and not this one for thin cysters. i dont have much to add here--i just made my first appointment with an RE for december to be evaluated. i was told i had pcos before and took metformin but had to discontinue due to other health issues complicating the side effects, etc.
i would get a second opinion. always. good luck.

Kizmin · 10-21-2008, 06:34 AM

First off, I'm sorry you are having such a difficult time.

Secondly, I don't think it is right for your doctor to be so negative about your condition thus far. He/she should keep the opinions to themselves for the sake of your stress level, which, certainly never helped anyone get pregnant. I would get a 3rd opinion, honestly, if your doc has this kind of attitude. Don't be discouraged, all great things come with time

I am sending positive energy your way, since your doctor has lacked in that area.

Good luck,

Justine

IzzyB6265 · 10-21-2008, 10:34 AM

I wanted to add my 2cents in here:-) My RE said that Thin PCOS is very treatable. I had the lap,hsg, diathermy & on 1500mg Glumetza. A question here, why does your dr. have you on 1000met? I usually hear/or/read of women being on like 2000mg of met. That could be something to inquire about. I know that met. or glumetza takes a good few months to get your body turning around in general, and if you aren't on a high enough dose to begin with...it may not be doing what it should for ya. just a thought~ also, I have started a low sugar diet which I really like. I read A Patient's Guide to PCOS and got the info for that. Don't get down or upset. You will see that +++++ someday:-) This could be a simple matter of dosage, diet, or possibly just getting a new RE. Best of luck:-)

barkley12 · 10-21-2008, 05:26 PM

Well, my current RE (not the one I got the negative second opinion from) specializes in PCOS. I was the one who asked about Met, and he basically said there IS research that shows it helps IR pcos patients, but only one study that shows it helped non-IR IVF patients get pregnant. So, I could try it if I want. He was just a little cautious about the IVF study b/c he said sometimes "non-IR" patients are actually IR, they just haven't gotten the most thorough testing to be diagnosed correctly, so there was some question to the study.

So, in a nutshell, I'm voluntarily trying it! I was on 500 mg/day at first, then asked him to up it. He did a blood test to make sure I wasn't having any adverse affects, and gave me the OK. So, I'm planning on working up to 1500 mg/day soon. We'll see about 2000 from there...

IzzyB6265 · 10-22-2008, 10:07 AM

Wishing you lots of luck and hopefully we'll see some ++++++'s soon. Xing Fingers:-) Take care~

Tummy · 10-22-2008, 08:53 PM

I have also been told by 2 docs that thin PCOS was harder to treat than "regular" PCOS in regard to getting us to ovulate, but they also said that with IVF, thin cysters tend to have better quality eggs and thus better results, so I'm surprised about that part of your doc's comment. I had zero issues with fertilization, it was just getting me to f-ing ovulate! For IVF, we didn't even do ICSI (where they have to inject the sperm directly into the egg) -- I had 10 mature eggs and all 10 fertilized beautifully. And by the end, 8/10 made it to beautiful blasts (day 5 embryos) and we have 6 waiting for us for the future (transferred 2).

barkley12 · 10-23-2008, 02:25 PM

Quote:

Originally Posted by Tummy

I have also been told by 2 docs that thin PCOS was harder to treat than "regular" PCOS in regard to getting us to ovulate, but they also said that with IVF, thin cysters tend to have better quality eggs and thus better results, so I'm surprised about that part of your doc's comment. I had zero issues with fertilization, it was just getting me to f-ing ovulate! For IVF, we didn't even do ICSI (where they have to inject the sperm directly into the egg) -- I had 10 mature eggs and all 10 fertilized beautifully. And by the end, 8/10 made it to beautiful blasts (day 5 embryos) and we have 6 waiting for us for the future (transferred 2).

Are you Insulin Resistant? I'm not, so I wonder if that makes a difference, b/c I usually do ovulate, just later in my cycle than the RE says is healthy.

I'm so glad you heard positive news about thin cysters' eggs! Although my FSH is fine, my biggest fear of course, is that my eggs are crappy. In fact, that second dr. that gave me the negative opinion said he ALWAYS uses ICSI on the very first try w/ thin PCOS IVF b/c sometimes not a single egg fertilizes

Hmmmmm......

Tummy · 10-23-2008, 04:30 PM

No, I'm not IR, but I never ovulate on my own all. It's so strange how we're all so different. That's interesting what your 2nd dr said. They just tested DH's sperm to make sure they were good, and then said we wouldn't need to do ICSI. If fact, I've encountered several thin cysters on here who did IVF who didn't need ICSI. And we all are over 30 and we all made good embryos! Weird...

I also did a search on Pub Med about lean PCOS egg quality and found several articles that said we have more and better embryos than non-PCOSers doing IVF, but couldn't find anything comparing us to obese-type PCOSers.

It's really frustrating when every RE has their own opinion about things!!

UsForever75 · 10-23-2008, 04:49 PM

My 2 cents in regards to the amount of Met, kepping in mind I do not have any kind of a normal cycle on my own... I was dx Jan '08 and my dr put me on 500mg Met ER, then upped it to 1000mg Met (non ER b/c he forgot to write the ER on the rx pad and I didn't kow any better at the time), then to 1500 mg Met ER, then to 2000mg Met ER ... I took each dosage for 1-2 months before he'd up it as to not shock my body and make me sick ...

On the 500mg I noticed nothing, on the 1000mg I noticed nothing (and actually felt worse b/c it wasn't the ER), on 1500mg I felt better and my cycles started being more frequent, on 2000 mg I was chronically sick (nausea, diareah ... tmi sorry) so we bumped back down to 1500mg and my cycles are slowly getting more normal ... from 102 days to 52 day to 45 ... getting better ... and I just feel better over all.

Granted I'm not preggo yet, but really haven't been trying b/c DH wants me to feel better and let the meds work their magic before we throw a baby into the mix ... lol ... he takes great care of me!

Good Luck and I hope this helps ... sorry its so long ...

***BABY DUST***

Sam29 · 10-23-2008, 07:50 PM

Ok, my doctor says the complete opposite!

I am 5'9 and about 135lbs.......when I was first diagnosed with PCOS my doctor told me that the good news is that I am thin, that is on my side!

I have had IVF and go pregnant on the first round....which was great news, unfortuantly I miscarried and haven't been pregnant since. But it did happen for me.....and I am praying it will again soon.

I read a lot about over weight ladies with PCOS being told they have to loose weight.
As for why you are having no luck with conceiving, what other testing have you had done? Maybe there are other issues going on? Have your tubes been checked or your lining to be sure there are no issues there?

tree woman · 10-23-2008, 08:29 PM

Just wanted to offer you some reassurance. I went through two years of infertility treatments (Clomid, met, Clomid + met, gonal F, etc.) before trying IVF. Our only prior BFP resulted in a missed miscarriage. I had no AF without meds and all of the PCOS hallmarks. I agree with the other posters. We PCOSers can make a lot of decent eggs in IVF, and my doc seemed to think that being thin was also an advantage. The key is to be monitored carefully so as to avoid hyperstimulation. I was so discouraged going in to IVF after so many failures before that, but I had great luck -- made more than 30 eggs, 19 fertilized. We went through plain vanilla IVF (no ICSI), and I was blessed to get pregnant with DD the first try. I was on 500 mg/met twice a day through the end of the first trimester and went through accupuncture treatment during stims and after transfer. I'm sending lots of baby dust your way. Good luck!

barkley12 · 10-26-2008, 03:32 PM

Wow, ladies...thank you all SO MUCH for sharing your encouraging experiences!!! After 1.5 yrs ttc, clomid, femara, injectibles, iuis, met, tons of bloodwork, and lap/hsg/ovarian drilling with nothing working, I was losing hope. This gives me lots of that back!!!!

tory · 10-27-2008, 08:23 AM

Wow, I needed that too. As far as I can tell (I'm only 3 months off BCPs) I have no cycle and no ovulation - no sign of AF yet. I'm losing hope a little. Thanks so much.. Has anyone been in my position? What did you do?

Tummy · 10-27-2008, 02:22 PM

Yep, I never ovulate or get AF without help. If you're ttc, you probably need meds to help you ovulate (i.e. Clomid or Femara to start). For those of us who don't ovulate, getting pg without medical intervention is pretty impossible.