New Diagnosis, PCOS

nmt18 · November 2014

Hi Everyone! I think I'm in the right discussion group... My name is Nicole and I'm 27 years old. My hubby and I have been TTC for over a year now. I recently went to the OBGYN due to pain, they thought I had a cyst and wanted to perform an ultrasound. After the ultrasound they told me that I had PCOS and that they wanted to start me on colmid to force ovulation (it was either this or back on BC which I certainly do not want to do!!). I honestly was not expecting this. I have not started any treatment yet (waiting for next cycle) and I have no idea what to expect. I have so many questions that I don't even know where to start. Literally any advice is appreciated!

Ann612 · November 2014

You have definitely found the right discussion group. There are many ladies here who also have PCOS. I can't offer advice here (although i know others will) - but I wanted to say welcome to our group!

LindseyM2012 · November 2014

I'm sorry you were taken by surprise by this. It can be so overwhelming at first, but PCOS is relatively common and a lot of us on here have it. Since it is so common, it seems that many docs are quick to jump to the PCOS diagnosis. DO NOT START TREATMENT until you've had a full battery of testing done to confirm diagnosis (PCOS is more than just multiple ovarian cysts; that is just one criterion). In truth, PCOS is a hormonal imbalance that causes the multiple ovarian cysts so you need a lot of blood work done to confirm. Listen to @iputketchuponketchup and DO NOT take unmonitored Clomid from your ob/gyn. Every case of PCOS looks different (different hormone levels) and you need proper and close monitoring to make sure your particular hormones are being treated and you don't over or under respond to whatever medications you'll take.

nmt18 · November 2014

Thank you for the responses! I did have BW done and my levels were backwards. My glucose was also slightly high, but OB didn't say much about it that I remember. I did not have an HSG. My H is willing to do a SA but I think it makes him nervous (which I understand).

I have had "hormonal" acne since my teenage years, although it did seem to get worse after stopping BC. Thanks for the tip about carbs, I'll have to try that!

I was completely blindsided by the diagnosis. To the point that I think I was in shock for most of the appointment. I didn't ask many questions (which is totally not like me) and pretty much sat there and nodded my head.

So basically both of you are telling me to hold off starting clomid and see a fertility specialist. I was thinking of talking to another doctor for a confirmation after leaving the appt. I felt like it was such a quick decision - BW results, ultra sound, same day diagnosis, start fertility treatment - that I wanted to talk to someone else after I did some research and had somewhat of a clear head.

I'm already glad that I found this board and decided to post before I started treatment. I truly appreciate the advice!

SND1231 · November 2014

Welcome. I agree with all PP. Do not take the clomid through the OB. Go to a RE and start the testing. I know it seems like you just can't wait but it is much better to know than to look back and wish you had done it.

LindseyM2012 · November 2014

A second opinion is never a bad idea. Seek out a fertility specialist (Reproductive Endocrinologist - especially since PCOS is an endocrine disorder) for that. Some things an ob/gyn considers "in normal range" may be not ideal for TTC with PCOS. Example: My TSH was within normal range at 4.something (according to my ob/gyn) but my RE wanted it below 2 for TTC with PCOS so she started me on low dose of generic Synthroid. You'll just a much more comprehensive level of care with an RE who sees this day in and day out.

I'm glad you found us too. Again, this can be overwhelming - especially in the beginning stages - so its good to talk to others in similar situations.

kushie77 · November 2014

Welcome. You are on the correct board. I'm sorry you find yourself here.

I will just reinforce everything the PP have stated. You need a thorough and comprehensive exam which is something 99% of OBGYN are not equipped/willing to do. They just like to hand out clomid like candy. You need the expertise of a RE. I would recommend getting that SA done soon. While YH may be nervous, it's not a huge deal to do and he might even be able to produce his specimen at home. If there are problems there you can start addressing those while you get established with a RE.

Good luck.

deelopi9 · November 2014

Welcome to the board! The ladies here offer a wealth of information. I too was blindsided by my PCOS diagnosis, even after being with a RE for 2 years. Go for the 2nd opinion, I look at the OB/GYN as an expert/specialist for keeping you pregnant and a RE as an expert for getting you pregnant. The difference is their level of education, experience in treating specifics pertaining to your fertility. Good luck.

Shauntee · November 2014

Welcome! I am a fellow PCOS'er so I feel your pain. I was a litlle shocked by the diagnosis, but was also glad that it had a name and we could finally do something to be proactive. I agree with PP, run to an RE. Good luck with your journey. I hope you aren't here for long.

dancerspose · November 2014

Everyone else has covered all the basics and emphasis on not taking Clomid unmonitored. I'll just add my welcome and good luck to you! I hope your stay with us is short, but it's a great group of ladies while you're here!

wanderlust508 · November 2014

I have no experience with PCOS but many of the other ladies here do. Welcome and I hope you find some answers from your dr and from the wonderfully knowledgeable ladies here.

I hope you'll get a referral to a RE who can guide you better than an OB-GYN can! You should certainly be able to get that after trying for over a year. Best of luck and keep us posted!

mshandlebar · November 2014

Welcome! I hope your stay here is short and sweet

MustangChic · November 2014

Welcome! You've found the right place. Even when you suspect something is wrong (I suspected PCOS for myself), hearing it from a doctor is still tough. I can't imagine feeling totally blindsided. Sorry for that, but the good news is you know now and can put a plan together!

Just like the PP said, get the proper testing done before clomid. See an RE. You don't want to do damage to your reproductive system. GL and I hope your stay is short!

nmt18 · November 2014

Thank again for all the advice. Made an appt with a RE for next Friday. The more I read about PCOS I believe that the diagnosis is correct. The OB showed me the ultra sound pics and it is exactly as described. Hopefully the RE is good (there are only 2 in the area and this one will take my insurance) and comes up with a plan! For those of you that have PCOS - do you get aching/cramping pain in your lower abdomen? It is happening quite a bit lately and not connected to AF. Was the main reason that I went to the OB and they never really said much about it.

megrae12 · November 2014

Hi, welcome. Everyone has covered what you should do regarding PCOS. I am glad you have an appointment with an RE, they will be able to help you and get a plan for moving forward.

As far as the cramping goes, I have it all the time. However, I have stage 2 endo and have had two laps pretty much back to back. I am not saying that your cramping is endo related but I do second PP for telling your RE. They may have a better idea of what is causing it.

deelopi9 · November 2014

BlueFairy5 said:

So glad to hear you already got an RE appointment!

I haven't had aching/cramping pain as such, but during the 6+ months between BCP and starting Clomid (i.e. when my ovaries started behaving again) I did constantly feel like I had to pee. I was perpetually going in for UTI tests that were always negative. Bring up the cramping to the RE. He/she may not have anything to add, but at least will be aware. My RE was overall much more knowledgable about PCOS than my OB, so if there's anything to look into there, odds are good the RE will realize it before the OB will.

Wow, this is me all day, everyday since I was 16. I'll bring it up to my RE too.

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New Diagnosis, PCOS

Re: New Diagnosis, PCOS

March 2014 - RE appt.
April 2014- Saline sono all's good, terrible SA results - 8 sperm found all abnormal
May 2014- Fert Urology- Bilateral varicoceles, recommend Donor Sperm

12/2014- Surprise natural BFP EDD 7/31/15 Plan: Starting foster to adoption, natural cycles

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New Diagnosis, PCOS

Re: New Diagnosis, PCOS

March 2014 - RE appt. April 2014- Saline sono all's good, terrible SA results - 8 sperm found all abnormalMay 2014- Fert Urology- Bilateral varicoceles, recommend Donor Sperm

12/2014- Surprise natural BFP EDD 7/31/15 Plan: Starting foster to adoption, natural cycles

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March 2014 - RE appt.
April 2014- Saline sono all's good, terrible SA results - 8 sperm found all abnormal
May 2014- Fert Urology- Bilateral varicoceles, recommend Donor Sperm