I think I have just been diagnosed with PCOS - can you help?

[DEBBB]

Hi girls,

first of all i am new - Hello!!

I have been TTC for 11 months now with no success - no BFPs at all. My cycles have always been irregular since I came of the pill Nov 06. In that time my LP was anything from 9-11 days, cycle was anything from 23-35 days. I started seeing a Chinese Medicine doc and now my LP appears to be about 13 days, my cycles around 26, which is great, but I'm still not pg.

This week I got my 21 day blood test. Results are as follows:
- I am displaying some symptoms of PCOS, althought she didn't say I definitely had it from what I can remember
- My hormones were fluctuating a little that made her think that I wasn't ovulating regularly. This would explain differing cycle lengths (although the last 2 have appeared similar?)
- She wants to put me on 50mg / day of Clomid for the next cycle and the following one (if I don't get pregnant). If that doesn't work (2 cycles on clomid) she will refer me to an FS (Nooo!)

Only thing is, if I'm not ovulating regularly, why do I still get temp peaks O time and EWCM? Chinese medicine lady thought I was ovulating so I am a little confused now?

My blood test results are as follows:
Prolactin 19ug/L
Luteinizing Hormone 10 U/L
Follicle Stimulating Hormone 6 U/L
Oestradiol 1060 pmol/L
Progesterone 63 nmol/L

Tests completed TSH, Progesterone, PRL, E2, LH, FSH

Can anyone interpret this or tell me where it's not normal? Apparently my thyroid came back in the normal ranges. How do you tell from that whether or not you are ovulating or have PCOS?

I feel a bit stressed about getting / not getting pregnant in the next two cycles. I feel like if I don't my chances will decrease again and it will be that much harder - whether that is right or not...

What's the success rate of Clomid in my circumstances - does anyone know?

Thanks girls - I'm a bit confused as to whether this is good news or bad news!

Deb

[butterfly_warrior]

Deb, first of all PCOS isn't as bad as it sounds. It's caused by insulin resistance, which means the body can't use insulin properly so your pancreas ends up pumping out more and more, and the excess insulin causes other hormones to go screwy.

Do you have any of the other symptoms of PCOS? Overweight, with weight centred around the abdomen rather than hips and thighs; Body hair following a masculine pattern; thinning hair on your head; skin problems like acne and skin tags. Have they done a scan to determine whether your ovaries are polycystic or not? There's a rather long list of outward physical symptoms, and it's not always something to go by - despite having severe PCOS, I have none of the outward physical signs (apart from the face that if I gain weight, it will be on my belly). Polycystic ovaries are also not much of a clue either, but it does help. It's possible to have PCOS (the syndrome) and have completely normal ovaries, just as it is possible to have polycystic ovaries, but have none of the other problems which create the syndrome.

Women with PCOS aren't necessarily annovulatory. It's entirely possible for women with PCOS to get pregnant with no medical intervention what so ever. It's also possible for women with PCOS to only be able to conceive with IVF, and everything else in between.

I'm not an expert on the blood test results - it's been way too long since I looked at that side of things, I'm leaving it to the nurses at my IVF clinic now. If your blood tests show a rise in progesterone after ovulation, and all the other right things (estrogen and LH peaks before ovulation, etc), then chances are that you are ovulating. That said, being able to ovulate on your own doesn't mean clomid won't help. It's possible that it could only be a very weak ovulation, and clomid will improve things - make you ovulate at a predictable time in your cycle, stronger hormone response, etc. The problem with clomid is that it can impact on cervical mucus, so at the same time as it can assist you in becoming pregnant, it can also make it harder. Look into preseed - a sperm-friendly lubricant.

One thing, did they look into your insulin levels at all? Hormone imbalances alone are not always enough to guage the severity of PCOS or whether it's actually there at all. They should also be checking the amounts of the androgenic hormones, which don't appear to have been checked in what you list. Fasting insulin and insulin after a glucose load are also important - basically a glucose tolerance test.

Finally, seeing an FS is not the end of the world. You'll actually find that they do a lot more than just IVF. There's a lot of intervention before that, like ovulation induction with time intercourse, or intra-uterine insemination. Thing is, they are fertility specialists. If getting pregnant is what you want, they are the ones with the most experience and up to date information on how to get you that way.

I hope all this has helped in some way. Please ask if there's anything else you're worried about - I've got a lot of PCOS information tucked away in my brain!

BW

[DEBBB]

Hi Butterfly Warrior!

I am a little overweight - by that I mean I have a few kgs i could lose (I weight 68kg, 165cm tall). I do exercise a few times a week and generally eat quite healthily, aside from the lazy takeway night I might have once a week. I put on weight in my lower body only. My tummy is flat as and I have the smallest waist in the world - which unfortunately make my hips look enormous (and the added weight there doesn't help!)

I used to get pimples, but not acne, but then I started looking after it and eating better and it's good now. I also went on the pill for a while and that seemed to really fix it. I do have some exess hair (upper lip and chin) but it is all light in colour and fine. No other weird places with hair. Not sure what skin tags are?

I don't have long cycles and I do get one every month without fail - the longest has been 35 days and they only happened once. Mostly they average 26-28 days, especially since I hav been seeing the chinese medicine lady. My period only lasts about 2-3 days though and I do get a bit of spotting too before hand. My Chinese medicine lady says it could have a lot to do with stress (I have a stressful job), and that I need to chill out a bit - easier said than done when you seem to be doing everything right and then month after month no +ve!! She has also done some blood tests and thinks I have leaky gut syndrome, which basically means i am leaking all the nutrients out of my blood stream and the toxins stay in. This in turn creates a more hostile environment for sperm in the body so she is putting me on detox in about 2 weeks. She has asked to see the results of my blood test and I guess will advise me further from that?

I didn't get the insulin resistence test. I'm thinking maybe I should go back to her and ask for it? I was also going to ask for an U/S and or a laproscopy / curette. Or should I try the clomid cycles first? I think I have to take 1 a day for 5 days from day 5.

I know it is silly having this irrational fear of going to an FS. I guess I have always been scared I wouldn't get pregnant and every step closer to an FS increases the fear that I will hear those words. I am also nearly 31 and I want to get pg soon - I'm not getting any younger and I want the best chance I can. Why does it take so long to see anyone and get any action!! Can't they hear our clocks ticking!! Arrrrrrrggghhh!!!

BW, thanks for your comments, that info is helpful. Would appreciate any other comments - especially if someone can help understand those results?

Thanks,
Deb

[butterfly_warrior]

Seems to me, from what you say, that PCOS is unlikely to be the culprit. But I'm not a doctor, so I could be completely wrong.

I've heard of leaky gut syndrome - apparently my MIL has it, but I don't know a lot about it. It appears to me that if what you are doing is aimed at becoming healthier, then it can't be bad, and could even perhaps help.

I know what you mean about the ticking clock thing - I'm rapidly approaching 33, and I've been at this TTC thing for two years now, with one year of that being IVF. But we think we've got all the problems sorted now, so it's just a matter of time, luck and the right embryo going back in. I have noticed that the wait to see a FS is significantly shorter than the wait to see other specialists - I've been able to get in to see two of them with a wait of only a couple of weeks, compared to the wait of a few months for other specialists. Are you located in Sydney?

Unfortunately, my experience is limited to PCOS and male factor infertility, so I'm not sure I can advise you beyond that.

BW

[DEBBB]

Yeah, I know... it's a mystery to me too. I will take the clomid, see my CMD and see how i end up.

Good luck to you too! I'm sure you'll keep us posted! Sounds promising!

[pollyanna]

hi debb,
This was initially thought with me too. I do have the midriff weight gain and skin tags. Ironically like you i was having the temp rises in the middle of my very long cycles and i was using maybe baby and it also indicated i was ovulating. After laparotomy though it was discovered not only was i not ovulating but i havent in years so i am also not sure how your body can play mean tricks on us. I did two cycles of clomid and no result so i am now seeing a fs and he is the ants pants and very thorough and proactive; i shouldnt have waisted my time with the other guy...lol. This fs is unreal. He really puts me at ease and helps me relax. I now understand what and when and why my body is doing what it is doing. And i also understand and can identify what fertile cm is.ewwwww.
Anyway i'm on injections now to force my body to co operate. They are a walk in the park and i was so terrified of doing them myself. I was such a woos. Anyway the moral of the story is go see a fs-they are experts and will give you definite anwers and you won't need to guess what your body is doing?Wishing you every success on your quest for answers.

Pauline

[DEBBB]

Hi Pollyanna,

That's what makes this thing so damn confusing! Everyone has different symptoms and variations. You'd swear we were talking about multiple disorders no the one disorder!

I am going to try the clomid. I guess it can't hurt. If not successful, it's off to the FS for me!

I'm hoping it won't get that far, but does anyone know of a good FS in brisbane?
(Fingers crossed I don't need that, but always a good idea to have the info on hand!)

Deb

[DEBBB]

Okay, Update. I ended up asking for an ultrasound, much to my doc's insistance that it wasn't needed! I didn't take the clomid and I had the U/S this morning (external and...ahm.. internal). I just got back the U/S results and they came back as normal. Yes, NORMAL.

WTF??!!

So do I have it or don't I? I am so confused at this point that I don't know what to do. Any ideas? Does the U/S confirm PCOS or not? Should I be going off the BT or the U/S?

I am so confused

I have asked for a hard copy of the results and will hopefully be able to pick them up tomorrow...but it would be really nice to know once and for all if I have this thing or NOT!!!

Crikey... does it have to be so hard???

What do you guys think?

[neane]

Hey there even though you have normal ovaries doesn't mean you don't have pcos, i would seriously see a fs i have pcos done clomid and am onto injections. you could try taking the clomid and see how you go you never know you might just get a beautiful suprise. So are you seeing your gp for your fertility? seeing a fs isn't so bad my oh and i had alot of questions and also alot of what we thought we knew was wrong so fs put our minds at ease and the staff (nurses) were fantastic and very supportive.

[satya]

I'm no PCOS expert but I've been investigated for it twice (ten years apart) and been found not to have it even though I had several of the symptoms including the weight gain around the middle, the hair growth, infertility, acne (the first time round, not this time) but not polycystic ovaries. It doesn't sound like you have the symptoms so I wouldn't worry too much about it. Unfortunately many doctors see PCOS as the most likely reason that you aren't conceiving and launch into testing for that before testing for anything else.

Sometimes things just take time. My first pregnancy took 3 years to achieve and I was seeing a FS at the time. Clomid didn't work for me but I did get pregnant 3 months after going off it. My second pg took 9 months to achieve and the 3rd took 4 months. All these pregnancies miscarried early. This pregnancy was achieved after being told my only hope was IVF (due to my infertility history, my age 41 & my m/c history), but here I am 16 weeks tomorrow with a naturally conceived baby. You just never know what's ahead of you on your TTC journey.

Don't be scared of FS's but also don't expect them to have all the answers as they can be wrong.

[DEBBB]

Well, I got a second opinion today - this doc thinks I don't have it and has referred me to an FS. I am officially in the "unexplained fertility" group, which feels worse than PCOS somehow. I guess because I don't know what I am up against.

Mentally, I'm just not ready to go down the FS road. My Chinese medicine doc and naturopath are putting me on a detox and a heap of herbs. They have seen my tests and think they know exactly what's going on. They think I am exhibiting clinical signs of PCOS, so it's only really minor. Apparently they have gotten heaps of girls with PCOS, habitual miscarriage and other ugly scenarios pregnant, so I feel like I have some hope. The way they describe it does make sense to me.

Oh well, guess I have to chill out, have some faith and let them go their hardest!!

Wish me luck. If it all works out, I'll post the details!

[neane]

good luck Debbb, i have been looking into the sharkeys healing centre in queensland that was on current affair a few weeks ago i think, a few of the girls i work with have friends who have used naturopathy and fallen pregnant they had been trying 8yrs and told by fs they were not able to have children. they went onto the herbs and fell pregnant 3months and nearly a year after. that's were i am headed next.

[DEBBB]

Yeah one of my friends fell pregnant using those herbs too. She had been trying for 18 months with no BFP. I was trying to decide whether it was worth changing over to them from my current docs but apparently they have a high success rate too. Has there been much success with girls from this forum do you know?

[Turkish Delight]

Hi Deb.
I was diagnosed with PCOS last year when we were TTC. As a kid i had acne, overweight etc.. My cycles as a teenager were always 40+ days.
I had no trouble conceiving #1 but with #2 it was then i was diagnosed. I didn't get AF after the pill so I had heaps and heaps of blood tests, CT scans, u/s - it was horrible. Ask for a testosterone blood test as that is the give away. I had high testosterone levels and was not ovulating. I was refferred to an endocrinologist, who told be to lose weight and my periods would come back. I lost 10kgs and my periods came back, i had 1-2 AF and then was pregnant. Could weight be an issue for you? The body is strange, just losing a few kgs may help??

Your u/s came back normal? So did mine, but then i had a CT and they discovered a 6cm cyst on my ovary.

I hope you get diagnosed real quick! take care

[DEBBB]

Hiya,

Yeah, my U/S came back normal. Normal size ovaries, no cysts, no fibroids. They did an external and internal scan. Report said nothing to indicate PCOS at all. The only thing they did say was that my uterus was slightly bicornuate, but apparently it's nothing I should worry about.

I didn't get the testosterone test though and I'm so over being poked and prodded and having doctors disagree over what might be wrong.

As for being overweight, I am 67kgs and my BMI is in the normal range. That said, I am currently on detox and am losing a little weight as a result of that. So who knows. I'm just leaving it to the gods. And my naturopath. And my Chinese medicine doc. Hee hee. Apparently that have had lots of success treating PCOS sufferers and lots of other conditions affecting fertility.

Fingers crossed!!