New PCOS person here

[RR_76]

Hi. After sitting on the sidelines for a while, reading these, I finally decided to jump in. Terrific site and info by the way! I have never ovulated ever! I was on the pill for many yrs. was diagnosed w/ PCOS a year or two ago when I began TTC. My PCOS symptoms are barely there, except for lack of ovulation. I am not overweight, insulin resistance, excess hair etc. My first doc put me on metformin, then glucophage. No period came. Then switched docs. I have done clomid twice (50 mg, 100 mg). my progesterone level did not move at all! iright now I am on my third round at 150 mg. I have been reading that you shouldn' t do too many rounds of clomid due to cysts, and it can actually decrease your uterine lining.

My doc and I have not yet talked about injectibles, IUI, and IVF. If this clomid round does not work, and for someone with PCOS, do most people do injectibles next, or IUI, IVF?? what is the the usual path for a person w. PCOS? Do patients with PCO have good success rates with IUI or IFV, and is one a better one to start with?
THANKS!

[MomNC]

Welcome!

I was diagnosed with PCOS 9 yrs ago. Unfortunately, I do have all the nasty side effects. Clomid does tend to cause cysts, and many PCOS suffers don't have much luck with it. I took 250 mg and ended up with a huge cyst that was surgically removed.

Alot of ladies, myself included, move on to injections with an IUI. The injections are more closely monitored, plus,so likelihood of cysts seems to go down.

As for IUI vs. IVF...if you don't have any MF involved, hopefully IUI will do the trick!

Good luck!

Amy
Proud mommy to Nicholas and Caeden, former 23 weekers, now 2.5 yrs
conceived with follistim and IUI

[Birdbrain2]

If you didnt ovulate with 150mg why did they put you on it again?? Thats weird. Im getting ready to start injectables I think, if this cycle doesnt work. The one thing I will suggest is that you ask your doctor about Letrazole (Femara is generic name). It is a sister type drug to the clomid, but is used for post menapausal breast cancer patients. It works pretty much the same way as clomid, but some seem to respond better to it (myself include). I have known about my PCOS for almost 2 years now, and I've been through 4 rounds of clomid, and this is my third round of Letrazole. The other good point about the letrazole is, there arent as many side effects. The hot flashes are still there, but even they're not as bad. There also isnt a risk of the "hostile mucus" with let vs. clomid. Im also looking into a procedure call ovarian diathermy. Its a laproscopic procedure that drills holes in the ovary to restore normal hormones. There are great results with it, but Im not sure whether it will be the right route for me, or you for that matter; but it never hurts to ask. Good luck to you and god bless you! email me anytime if you want to ask anything else karen_kse@yahoo.com

Karen :@)

[RR_76]

Thanks to both of you for your responses. We have not yet done any MF tests yet. I probably should get that cleared so I don't spin my wheels at all. I will ask my Doc about the other medication you mentioned birdbrain2. Did you ever have any luck ovulating on this medicine? I just finished my thrid round of clomid, 150 mg. i will go a PG test next week. Will keep my fingers crossed. If it is still low, then I think we will discuss the next step, maybe IUI w/ injections or IFV, or maybe Letrazole. I didn't know that the clomid can cause hot flashes. I have had them and was thinking what the heck is going on? I also seem to have really sore breasts and abdominal cramps around the time I am supposed to ovulate. but my PG tests have not shown any increase. hopefully it will be different this time.

Regarding injections, how many times a day, do you normally do them MomNC? I am little nerv. about that with my hectic work schedule/long hours, and the thought of needles in the abdomen, is a little scary. I know depending on what type of medication you are on, (and IM vs. the other kind??) , you can do it it in different spots.

[Birdbrain2]

Hey-

yeah i did ovulate with the letrazole. Two out of the only 3 times i have ovulated was on let. One of them is this cycle, Im really excited, but really nervous about getting my hopes up again. Im nervous about the shots as well.....especially the cost of them. I ovulated one time on clomid 150mg but they tried it again and I didnt. They havent measured my PG levels as of yet, they have just been going by my chart, but I think things are going to pick up if this cycle doesnt work. Im praying with every ounce of my being that it does though!! Good luck to you and I hope you find the right thing!!

Karen

[eaglet]

RR_76 - you haven't done the semen analysis yet (the basic test for male factor)? I'd get that done pronto. It should always be done prior to starting clomid (as should an HSG). It's very important info to have. It's disappointing that your dr didn't order a semen analysis already - such a simple test.

Are you still taking glucophage, a.k.a. metformin? Some people succeed with a combination of metformin and clomid when neither worked alone before.

Traditionally, the next step of fertility tx is injectibles with IUI. Some people skip this and go directly to IVF, especially if they are high responders, as many people who have pcos are, or if they have other issues, like endometriosis, for example. It doesn't really sound like you're a high responder, since the clomid isn't doing much for you.

But here's the thing - we don't really know what the clomid is doing for you if you're just having a day 21 progesterone test. Your clomid cycles should also be monitored with a mid-cycle ultrasound. That way you'd have better info about follicle production. A protestserone blood test is supposed to be done 7 days past ovulation, but unless your dr does a mid-cycle u/s (often with an hCG trigger shot when the lead follicle has reached maturity), they won't know when to do the progesterone test, especially since many people ovulate later than cd 14 on clomid. (I assume you are aware that you can only expect your period two weeks after ovulation, not on cd 28.) Just doing a test on cd 21 does not give you any info if, for example, you just ovulated on cd 20 or something. It sounds like you may be seeing an ob/gyn instead of an RE - if that is the case, I'd highly recommend switching to an RE.

My constant advice is this: no matter what kind of monitoring you are getting or not getting during a clomid cycle, chart your BBT. That way you'll have your own little record of when and if ovulation happened. It's free and completely within your control, not your dr's.

anyway, that's my two cents!
-eaglet

[RR_76]

Eaglet,

Thank you so much. You gave me so much information that will be helpful to me. Yes, my doc (who I don;t believe is an RE) did not mention the semen analysis. the title of this group is called asscoiates in OBG and infertility. He seems like he knows his stuff. His bedside manor and staff and location are much better than my last OBGYN.

Regardless, I def. need to sit down w/ him again and go through some stuff. after my progesterone blood test next week, I will find out if I ovulated. If I did not, i am going to hammer him with some questions. I just started getting educated over the last couple of weeks, so now i know what questions I need to ask. I stopped the glucophage. I am not insulin resistant, so that prob. won't help much. I am thinking that if this round (clomid #3 ) does not take, going to ask about IUI with injections next. or maybe another round of clomid with trigger shot. or combo with glucophage.

Any idea what the consensus is on how many clomid cycles you should try before you move on. I am on #3 (150 mg).

Re. my prog. test, he said I should come in btw. days 23 and 26. Since I never ovulate or get AF, I cant count on days since my last AF, and i think ovulation predictor tests or charting BBT will most likely not work. Let me know if you think i should try!

what is a high responder? i dont think i am since clomid has done zilch for my progesterone levels.

how do you go about finding a good RE?

[eaglet]

RR_76 - I'm concerned about something here but maybe I'm misunderstanding. You can't count cycle days because you haven't been having AF - do you mean to say that after failing to ovulate on clomid, your doc just started you on another round of clomid without bringing on AF with provera??? You really ought to start your clomid cycles with a clean slate, both from a hormonal perspective and with regard to your uterine lining. It's complicated, there are hormone receptors, etc. (I'm not sure I can explain it exactly) but really you should start fresh. There isn't any reason not to do the provera that I can possibly imagine - it's pretty simple, just a form of synthetic progesterone.

I absolutely think you should chart BBT if you think there is a chance of ovulation, such as in a clomid cycle. If you are not ovulating, of course the chart will be a big mess, but realize that a chart that is a big mess still provides valuable information, the info that you have not been ovulating. For the vast majority of people, if a person is ovulating it will show up on the chart. (see Toni Wechsler's book Taking Charge of Your Fertility, and also free charting at http://www.fertilityfriend.com/ .

OPKs are a different story - they may not work for you if your LH level is too high most of the time, as it often is with PCOS (LH is the hormone that the sticks test for - in a normal cycle, there is an LH surge just prior to ovulation). If you are being treated with metformin, your LH levels might go down to normal and then the OPKs might be useful. I have been having luck with them the past few months (showing surge at the appropriate time which matched the ovulation later shown on my BBT chart), whereas the last time I used them, years ago, long before I tried metformin, I got positives all the time but wasn't ovulating.

Finding an RE can be easy or difficult, depending on where you are (there are usually more choices in big cities, etc.). Try going to ivfconnections.com - there is a section about ivf by location - there is a board for each state - look there. I wouldn't feel comfortable at all with your current doc's treatment, at least as you've described it here, so my advice would be to go elsewhere. It really does not sound like he is an infertility specialist. A lot of OB's like to dabble in fertility tx, but the fact is that it's a sub-specialty of ob/gyn, and most ob's just don't know enough. That doesn't mean they aren't good OB's - you can go back to your nice ob with the beside manner when you are good and pregnant!!

As for the metformin question, insulin resistance is notoriously difficult to diagnose. My fasting insulin level is normal, and I have even had a 3-hour GTT with insulin levels that was supposedly normal (long story). But my father is a normal-weight type 2 diabetic, so I had a big clue that something was going on there for me. Anyhow, metformin helped me a great deal - I ovulated and conceived my dd on metformin alone, my very first cycle, after 6 failed clomid cycles and 4 failed IVFs/FETs. So, in my opinion, if you have pcos then you should keep up the metformin whether or not your tests show insulin resistance. It may well improve your response to clomid.

My advice about the clomid would be to at least take a break from it after this cycle. Maybe give metformin a try before gearing up for more ovulation induction with either clomid or injectibles. After 3-6 cycles in a row, it becomes a contraceptive. It was actually originally invented for the purpose of contraception.

hope this helps!

[RR_76]

Thanks for all the info Eaglet.

the first 2 clomid rounds, i did provera to bring on AF, then started clomid. this time, he said wasn't necessary to do and just to start the clomid. i also thought that maybe the uterine lining wouldn't be perfect, (didn't ask )but did not really become aware of all these issues until the last couple of weeks.

i feel like i am on information overload and my emotions/hormones are getting a bit frayed. last night after reading your post, i kind of started getting bummed that maybe i have set myself back by doing 3 clomid cycles with no results. Even though I am in the middle of my 3rd cycle, (and it could possibly work this time), I feel in my heart it won't work this time. My progesterone round 1 was .7, round 2 was .8. upping another 50 mg, most likely wont get it where it needs to be. so im getting worked up about the next phase, (injections, IUI, IVF). Took your advice, started looking into finding a good fertility clinic/RE. the good thing is i am in a major metroploitan area, and there are a bunch to choose from.

i am getting nerv about all the daily blood tests/ultrasounds and how to handle that with work. I have used the "doctor" appointment" excuse so many times already. debating on whether or not to enlighten by boss (female) on whats going on. she has 1 daughter, so she might be sympathetic. but on the other hand i think not, she prob. doesn't want to lose me for a few months on maternity leave. (god willing )

so, another issue... this week is our "busy" week as I like to call it. it has been really hard to squeeze it in, (our work schedules/commuting) makes it difficult. to make matters worse, this morning (for the first time EVER!!!), my dh had issues w/ ejac. this has never happened ever (in the 7 years together). he said the pressure and the aspect of timing it has gotten into his pshyche. we were both crushed.

i checked out that website re BBT. looks good. will this be helpful even for someone w/ PCO? I am going to try though.

on another note, my good friend who has been TTC for a year just got PG after her first clomid round. I was SO HAPPY for her. really i was. but after the recent downturn in my outlook/emotions/this morning debacle, i am sad. in a way it was nice to have her there since she was going through the exact same thing at the same time. I know she will still be supportive and great. but still

[MomNC]

I did 5 rounds of clomid (starting at 50, and going up by 50 each month that it didn't work). I think that is standard for most people when they aren't responding to clomid.

As for the injections, I did mine 1x a day. They were subcutaneous and I did them in my stomach (did them myself, vs. having DH do it). I didn't think it was too bad. I had b/w and u/s everyday b/w cd6-15...to monitor the follicle growth.

I agree that you should have had a SA and HSG before starting anything. Why waste your time and money (and reek havoc on your body) if you have other problems? An RE is the only way to go...OBs are fine, but they don't have the subtlity that you need for IF. They just go along like everything should just work right....REs know it isn't working right and work to fix it.

Good luck.

Amy