Let's Talk PCOS - UPDATE in OP

renegadewhit · December 2014

I'm heading to the doc today to talk about PCOS, and I wanted to see what you ladies have experienced with it. What symptoms do you have? Are you taking any meds/how effective have they been for you? And just for my own AW needs, what kinds of questions should I ask my doc regarding PCOS and TTC/loss? AFM, I was diagnosed with PCOS a few years ago by an endocrinologist. I had a ruptured ovarian cyst, hirutism, acne, difficulty losing weight, heavy/painful periods, and a few long cycles every now and then. BC helped a lot, but she also put me on metformin. When I stopped going to that doc, I stopped the metformin. A few months later I stopped BC when we decided to ttc. Fast forward to now, my symptoms are worse than they've ever been, and I'm on CD46 with no ovulation in sight. Today will be my first PCOS discussion related to ttc, and this is a brand new obgyn whom I've only seen once when I miscarried.

UPDATE

The doctor visit went well. I gave her some background on my diagnosis and told her about the issues we've been having. I asked her about going to an RE and if she could recommend someone. She said there are things they could do there, but if they didn't work I'd be referred to an RE anyway, so she thinks with my PCOS it's a good idea to go straight to the RE. She works closely with an RE that's right next door to her office, and they're both in the same hospital system so all my records will stay together.

My obgyn prescribed me progesterone to jump start my period and told me to ask the RE when to take it so they can get the CD3 bloodwork. The RE got me in next Tuesday - a lot faster than I thought - and they said I could go ahead and take the progesterone right away. I just have to call on CD1 if it's before my appointment. I'm really happy with how everything went, so much so that I straight up cried in my car after leaving. I have a plan! We're moving forward! Woo hoo!

Wow that was long! Have a treat!

megrae12 · December 2014

Ok, first of all, I say skip the OBGYN and go see an RE. You have a medical DX that effects TTC. Most likely, the OB is going to want to put you on clomid. DO NOT TAKE CLOMID FROM AN OB!! I have PCOS and am on Metformin and under the care of an RE. Also, the RE will run more thorough tests than your OB will. Have you had an HSG or has your H has an SA?

Really, it's been said a lot but here it is again. The OB's job is to deliver a baby, the RE's job to get you pregnant. There is a vast difference in knowledge, training, etc. between the two. Go with the expert. At the very least you will have peace of mind knowing you doing all you can. You know?

renegadewhit · December 2014

Thanks @megrae12‌ I had no idea Clomid was so dangerous until @PetraStonegirl‌ posted today. Perfect timing, because I wouldn't have had any reservations if the doc said I needed it.

I've talked a little bit about seeing this obgyn and possibly going to an re in my check in, and it looks like the re will be my next step. My biggest reservation was that we've only been ttc for about 6 months, but with the PCOS being this bad, I think you're right that it's time to go. I'm hoping my obgyn will have a good recommendation.

megrae12 · December 2014

whitneyandconcep said: Thanks @megrae12‌ I had no idea Clomid was so dangerous until @PetraStonegirl‌ posted today. Perfect timing, because I wouldn't have had any reservations if the doc said I needed it. I've talked a little bit about seeing this obgyn and possibly going to an re in my check in, and it looks like the re will be my next step. My biggest reservation was that we've only been ttc for about 6 months, but with the PCOS being this bad, I think you're right that it's time to go. I'm hoping my obgyn will have a good recommendation. **Quote Fail**
I was referred to an RE when my OB SUSPECTED I had it. He let my RE do all the diagnostics etc. This was all after our loss, basically, my body fell apart. I would just go and ask for a referral and skip the inevitable talk that your OB can put you on clomid, etc. Go to the A team, not the B team.

Edit: Spelling.

rubysi · December 2014

Here is a little about my pcos struggles. It is a long story because I have been dealing with it for many years.

I was diagnosed 24 years ago at the age of 15 because of long cycles and multiple cysts. I was put on birth control for 13 years. This hid my symptoms.

Aftef the pill my cycles ran long maybe 6 a year. I got the joy of a beard (sexy). Rapid weight gain 80 lbs in 2 years and almost impossible to lose any. This was the beginning of our NTNP time (9 years).

Three years later I had a horrible flu , it lasted 6 weeks. I lost 50 lbs and the desire to eat, as in not hungry now craving, I had to force myself to eat, I lived of of apples and plain rice. I was like this for over a year. I lost a total of 80 lbs. My cycles regulated to 31 days and very light. Still sported the lovely beard.

9 years of NTNP surprised and failed pregnancy. For these 9 years I sought very little medical care. Hippie parents were poor and only went to the dr if close to death, something I regret but have started to get over.

The year since loss... I have had many tests and they believe my blood pressure rise might also be related to pcos. I have been prescribed metformin which has shortened my cycles and reduced hair growth. I have done 5 letrozole cycles only one failed due to a ruptured cyst. I am currently in the tww of my first iui.

Since there is no cure they can really only treat our symptoms. Let us know how your visit goes.

renegadewhit · December 2014

Do you think it would help to get back on the metformin to at least try to stabilize in the time between now and when I can get in to the RE? Or better to wait? I ask this not knowing whether the doc would even do that or just refer me. I never thought I'd say this, but I'm so ready to get back to the metformin.

megrae12 · December 2014

whitneyandconcep said:

Do you think it would help to get back on the metformin to at least try to stabilize in the time between now and when I can get in to the RE? Or better to wait? I ask this not knowing whether the doc would even do that or just refer me. I never thought I'd say this, but I'm so ready to get back to the metformin.

Honestly, it depends on the type of PCOS you have. You may not need metformin now, or your dosage may change. Personally, you need to discuss that with a doctor. Going on metformin is not going to be a magical cure all.

renegadewhit · December 2014

@rubysi‌ thank you for sharing. it sounds like you've had a long journey getting to diagnosis and treatment. Fx for this IUI. I can relate to the beard and the weight gain. I've been trying like crazy to not gain since I've been off bc.

I'll definitely update the post after my appointment.

renegadewhit · December 2014

@megrae12‌ You're so right. I'm going to take all of this to the doctor, and hopefully get a good referral for an RE so I can keep moving forward. Thank you so much for the advice.

megrae12 · December 2014

@whitneyandconcep I am glad you are going to pursue the RE option. It made me feel so much better that I wasn't in the dark anymore every TTC cycle. GL and keep me updated. If you need anything feel free to PM me!!

renegadewhit · December 2014

@megrae12 and @rubysi thanks for the help! Update in original post!

megrae12 · December 2014

Yay! I'm so glad! I hope they give you a good plan moving forward. Keep me updated and let me know if you need anything!

eliida · December 2014

Glad to hear that you had such a productive appointment. Yay for a plan!

renegadewhit · December 2014

Thanks ladies!! I'm so glad I talked this out beforehand. I probably would not have pushed for the RE appointment without your advice.

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