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weird cycles, terrible year... just looking for a bit of support/ positive encouragement I guess!

(9 Posts)
2ndDestiny Fri 14-Aug-09 12:54:38

I know these topics have been covered before and my situation seems to be freakishly unique so not sure why I am posting except I can't keep driving DH mad!

I'm 30. I always had regular ovulatory cycles before going on the pill, went straight back to normal after coming off, then conceived first time trying. Mc'd at 10 weeks. That was in January. AF never came back and I was diagnosed with PCOS (ultrasound and blood tests).

Have spent the last few months feeling so hopeless and cheated by my stupid body. Then I had a weird AF in mid-July, a spot of blood 12 days later, and another weird (but slightly more normal) AF 22 days after the first one (am now on CD10).

Just saw the gynie (finally) and she says no point in treating cause it looks like my cycle is 'waking up' again. She says as I used to ovulate, I will again - she thinks it is stress not PCOS that has stopped me ov'ing (since it seems I've always had PCOS - or PCO at least - and ov'd the whole time). The 'stress' explanation does seem likely since in the last 6 months I've mc'd, been told I'm 'subfertile', 2 close family members have become seriously ill (one of them terminal), I broke some bones in a car crash caused by a drunk driver and due to all that my work has gone completely down the toilet.

Gynie thinks the spot of blood mid-cycle was a sign of early or 'weak' ovulation caused by hormones that are still a bit out of kilter, but predicts it will normalise over the next couple of months, so has sent me away without any treatment to keep an eye on my cycle.

I really want to believe her but for some reason am still worried sick about it, which cannot be helping!! Has anyone else had cycles stop due to stress, and what were they like when they started again? Or anyone with PCOS whose normal cycles have resumed after a bad patch?

I did have a similar thing happen many moons ago in the carefree days of life before TTC - AF went awol during my university finals and came back after about 5 months - but I can't remember if it was 'normal' straight away cause I paid absolutely no attention back then!

Also she told me not to bother temping/charting cause it will only stress me out more, but I want to because I find the not knowing even more stressful - have never temped before but feel it will give me more of a sense of control - any thoughts?

Would love to chat to others with similar experiences, advice about charting, or generally anything nice and helpful to say

oops, sorry this is so long! blush

emeraldgirl1 Fri 14-Aug-09 14:56:16

Hi Destiny!

Poor you I don't know how much practical help I can offer at all but I wanted to post because you sound rather like me, both in experience and character! Though I have not miscarried (I'm sorry to hear you have) and am not in fact currently trying to get pg, I have insane cycles, suspected PCOS and a tendency to extreme stress and control-freakery!

Was told years ago I might have PCOS because I never had reg periods, but I dind't care at the time because I was younger. Now I'm approaching 33 and obviously I want to get my house in order on that front. I was on Depo for YEARS until about 4 years ago, so no periods at all, so I have no idea if I was ovulating then. Then I switched to a Progestrone only pill and after about 6 months or so, periods came back. Lovely and regular for a while, and then for the last 18 months they are all over the place It's miserable isnt it, because you feel like you have no control over your body (and I do hate to lose control)

At the moment I'm lucky if I have a period every 6 weeks, often it's 8... Until about 6 months ago when I began to panic that something is REALLY wrong with me, I have been assuming it's stress. One GP told me (fobbed me off??) that it must be stress and that I should relax (ha!) and it would all return to normal. But this year my DH has been out of work, I have had terrible work stress myself, plus I have family troubles (though not as bad as yours, am sorry to hear about them and hope all OK) So the chances of my body gradually finding its way to a balanced state seems pretty remote. Anyway, I'm fairly sure I must have PCOS, so stress prob isn't the cause! Hopefully I'll know more after my tests next week.

Anyway, I don't know how useful any of this is to you but I just wanted to give you a bit of a hello, because I think I understand some of how you're feeling. DH and I want to get on with the baby thing at some point, we'll wait a little longer of we can but if I do have PCOS we'll have to think about starting sooner, to give me more time. If it's any consolation at all, 30 is young!! As I say am almost 33 myself and wish I'd started checking things out a couple of years ago like you obviously have. Good luck!

KittensMittens Sat 15-Aug-09 02:27:34

Hi 2nd Destiny

I am glad that I have found you. It is 01:48am and I wanted to log onto MN to see if there was anyone in a similar/same situation as me and there you are. I second all that emeraldgirl1 has said about your situation. It has not been a great time for you and I am sorry to hear about that. Last year was a bit of a stressful one for me and this year has its challenges too but I will return to the stress later (sorry, this may be longer than your post!). SO AF started playing up in October 2008. AF visited in December but then after that it was February. After that it was April and then July 13th. I had blood tests taken but I get the results next week. My GP put it down to stress initially and said I should lose a little weight too (back in February). I had the signs of AF coming last Sunday and was expecting to properly start the next day but there was only brown spotting (sorry for the description). This carried on for another day or so and all week it has been really light, I actually thought that I was coming to the end today but I went for Myofascial Release (a soft tissue therapy that I had tried once a couple of months ago to start this relaxing that I needed to do) this morning and now it looks like I have started my period-again. I told the therapist about my physical issues and she said that she had helped open my fallopian tubes (she just placed her hands on my stomach, no massaging). Maybe I am like you and my body is trying to kick start itself again and the therapy helped complete AF? No idea but it is WEIRD. It is still a little stressful no matter how much I tell myself to calm down, take each day as it comes but I send myself into mini spins when weird things happen like that. Initially (earlier in the week) I was rather ridiculous and thought it might have been implantation bleeding but that is highly unlikely as this has been going on since last Sunday and now looks like a period.

With regards to charting, I have read that whilst our cycles are so up in the air it will be hard to really read but the benefit of charting is that you do get an overview of your body's temperature and pattern and that, in itself helps with the control side of things (even if it is just a little bit). I say, if it helps you become less stressed, then do it. I have tried to make a concerted effort to take time out and indulge every now and again in things that relax me, like a massage or therapy, having your nails done, taking an hour out to read a book etc. Little things can help settle the mind and body and prepare it better for when things start getting stressful.

Give it the 2 months that the gynie has said and use that time to set a relaxation program for yourself. Even if it is just one thing a week that you look forward to. DH and I went on holiday in April, home and work was very stressful and we took 8 days out and did nothing. It was amazing, hardly no phone calling, no computers and I would say within a week after AF visited. Unfortunately we cannot holiday every month but like I said a massage/therapy once a month helps clear the mind which can only help the body.

I also take Pregnacare Plus by Vitabiotics which help safeguard dietry requirements, from pre-conception as well as during and through to the end of breast-feeding.

Anyway, I am off to bed but please do feel free to message me anytime. Moan away, I do not mind. In my world everyone seems to be getting pregnant except for me and every other person is pushing a buggy with a beautiful baby in it. Oh well! Onwards and upwards - thank goodness for MN. SORRY this post is so lo.......ng.......

2ndDestiny Mon 17-Aug-09 14:35:20

Hi EmeraldGirl and KittensMittens
Just wanted to say a big thanks for replying to my rambling and rather self-pitying post! Didn’t get a chance to reply all weekend cause DH (who thinks trawling MN is part of me being ‘obsessed’ with TTC) hogging all my time. This is turning out to be another long on I’m afraid…

EmeraldGirl I completely identify with the feeling of lack of control. This has just been the worst time in my life for my cycle to go haywire. If you have always had irregular cycles, it is very unlikely that stress is the cause and PCOS does seem a likely culprit. If you have it is not a big disaster (mental note to listen to own advice!!!) as many women still ovulate with PCOS even if unpredictably, and if you don’t ovulate on your own there are lots of therapies to try, ranging from diet and exercise to various medications – and about 90% of PCOS women do have children. It seems I have always had PCOS but have spent most of my adult life having normal ovulatory cycles.

I also know what you mean about putting off TTC – like you, we were apprehensive, especially as I have not yet finished my PhD - we only started last year because we thought it might take 6 months to a year – the instant BFP was very scary but also so exciting, it really clarified our feelings about the whole thing – and losing the pregnancy clarified them even further – it now seems to be all I care about. I no longer see the point in putting it off since I don’t think there’s ever a ‘right time’ to have a baby. Thanks for saying 30 is young – I get so sick of all the media hype about fertility declining after 30, which is so discouraging and unnecessary, as if we weren’t already worried enough about the whole thing!

Kittens my last AF was very similar to what you describe, and I am usually a two-days of heavy flow with cramping followed by 4-5 days of lighter flow/spotting, so I didn’t even believe it was AF til I described it in minute detail to my Gynie. This kind of bleeding can be anovulatory, although my Gynie has this theory that I ovulated early due to an imbalance of LH levels (common with PCOS) – that’s partly why I have decided to start charting, cause all this conjecture drives me crazy and I want to see concrete evidence that I either ovulate (in which case I’ll be celebrating cause it’s been a long time!) or don’t, in which case I’ll be going back to demand clomid. The problem is of course that waiting and wondering is unavoidably stressful – it’s a vicious cycle isn’t it?

I’m interested that you saw your AF started playing up suddenly – did you always have regular cycles before? Did anything about your lifestyle change to precipitate this? E.g. weight gain, change in diet/exercise, etc other than stress? I’m curious because I have no idea why I used to have regular cycles and now don’t, and have yet to meet someone else whose PCOS symptoms came on suddenly/ out of the blue like this.

About this whole ‘stress’ theory: there is another condition called hypothalamic anovulation which is literally where stress or trauma stops your brain from sending the signal to your ovaries to ovulate. This usually causes a complete lack of cycles for a certain period of time, rather than irregular cycles. I was hoping to find someone who’s experienced this so I could compare notes, but it must be pretty rare cause no-one on here seems to have had it. My Gynie reckons I have had both this and the usual PCOS over the last 6 months (lucky me!) but I am not sure if this is true, or if it’s just that the PCOS very suddenly got worse. BUT I have also read that stress can really make PCOS worse if you have it, because it increases testosterone and insulin resistance, both big factors in PCOS. So basically stress could still be a factor for both of you regardless of your test results.

Kittens, I know EXACTLY what you mean about everyone else being pregnant or pushing buggies. Before my MC I had only 1 friend who had babies (and she started years before I was ready to consider it) and no-one was even talking about it. Since my MC no fewer than 8 people in our circle of friends & family have announced pregnancies – and invited their bumps round to our house – and I know I’m being COMPLETELY unreasonable and self-absorbed but I cannot help feeling as if everyone just waited until I lost my baby to decide to get pregnant. A lot of them knew about it, but they don’t know about the struggle we have had to conceive since. How long have you been ttc?

Thanks for all the tips. I’m already on the Pregnacare and trying meditation which is helping a little...

I wish you both lots of luck with getting your test results, and do let me know how it turns out (if you feel like sharing). I might also be able to help with any questions about which tests to go for re: PCOS as I’ve had the works now!
x

Petsville Mon 17-Aug-09 18:42:16

Hi 2ndDestiny - another one here in a similar boat. I came off the Pill three years ago, and for the first year my cycles were all over the place. The hospital told me, based on blood tests and ultrasounds, that I probably had PCO (but not the syndrome - not entirely sure what the distinction is). With hindsight stress probably had a lot to do with the irregular cycles as I was having a very bad time at work that year. Since then things have settled down a bit- I conceived naturally last autumn just before we were due to start IVF, but terminated the pregnancy in Feb (for triploidy, before anyone flames me). My cycle has now more or less settled down and a different hospital reckons I don't have PCO after all.

I'm still not regular enough to be predictable but the variation is now 5 days rather than 20. I also find that charting helps - it gives you a bit more of an idea what's going on and therefore some small illusion of control. (Incidentally, I tried Clomid and it really didn't work for me - it made me feel suicidally low and miserable, and I've never felt less like having sex than when I was taking it.)

KittensMittens Tue 18-Aug-09 10:48:52

Hi Destiny

I did stop once when I was about 15 and I think that it was during my GCSE's. AF returned after 2-3 months and has been pretty regular up until now. Last year I had a lot of personal stuff going on. I have put on some weight and need to get back into the swing of things.

I have just returned from my GP and the test results showed that my LH and FSH levels were normal as was my thyroid, my testosterone levels were a little high (not too high apparently though) and she said that she could prescribe me hormonal tablets to stop this bleeding that I am experiencing but thought that it should stop in due course. If it has not stopped by the weekend I am to go in and see her. She has referred me to a gynae so hopefully I shall hear from them this week. She said that with the raised level of testosterone it was pointing more towards PCO so I guess I shall have to wait and see until I see the gyane. As well as getting fitter and watching the weight is there anything else one can do with regards to PCO?

By the way, as much as I try and not to get wound up and try and think happy thoughts for people - is it not annoying when you see comments on Facebook like - "ooh.......I do not know how much dancing I will be doing at your party with this HUGE bump! tee hee hee.........." NOW........I KNOW that this is completely unreasonable but PLEASE..................

2ndDestiny Tue 18-Aug-09 12:25:59

Hi Petsville thanks for replying, and sorry for your loss (personally I would not judge someone for choosing to terminate a pregnancy anyway). PCO just means your ovaries have a polycystic appearance on ultrasound (i.e. lots of immature follicles), but you don't have symptoms - the syndrome means you have at least 2 of: symptoms (e.g. irregular cycles, acne, excess hair), an abnormal hormone profile, and PCO. I'm interested to hear your story cause no doctor has ever given me a straight answer about whether PCO(S) is something that can come and go - it sounds like maybe in your case you had it for a while and it sort of cleared up - or maybe the first hospital was just wrong! Who knows. Anyway I'm glad your cycles have settled back down (I could cope with 5 days variation that would be infinitely preferable to this not having a clue!) and wish you lots of luck with conceiving.

Hi Kittens your history sounds quite similar to mine. Glad your LH & FSH are normal - did you get your GP to print out the exact values for you? This is worth doing because you need to check not only that they are 'normal' according to the range set by the lab, but the ratio of LH:FSH. Basically they should be roughly the same; if LH is double FSH or higher, that can indicate PCOS. Even slightly raised testosterone that falls at the top of the normal range can indicate PCOS so it's good that you have a referral to a gynae, who will probably check your ovaries by ultrasound. It might be that you only have quite mild PCOS if you have it at all.

In terms of what to do, google Verity PCOS and look at their website, they have tonnes of information. For some women, losing 10% of your bodyweight can restore regular cycles (I have done this but I was not remotely overweight to start with and I don't think it's helped much). Low GI eating (cutting out sugar and only eating whole grain carbs and protein) is supposed to be really good for PCOS because of the insulin factor, I am trying that too. And regular exercise, even something gentle like walking. For some women, especially if weight may be an issue, the diabetic medication Metformin can help - you can discuss that with your gynae. Then there are loads of supplements - especially vitamin D, omega 3 and inositol (there's a special kind called D-chiro-inositol that's only available from the US and costs a fortune) plus the usual fertility stuff. Basically if you do get a confirmed diagnosis, you might want to invest in one of Collette Harris's books which summarises all this (e.g. The Complete PCOS Handbook - and she also did one specifically on PCOS and fertility and another one on the PCOS diet). But you probably want to see what the gynae says first.

Well I'm on CD14 and still no ov, not even a tiny sign that it might be imminent Am going to keep charting so at least I can go back to my gynae with the evidence if I still don't have any luck.

Good luck with avoiding all the FB bump-posers (sometimes this ttc nightmare gives us a right to feel a bit unreasonable envy wink)

Petsville Tue 18-Aug-09 21:44:40

Another reason there not to be on Facebook...

2ndDestiny, I haven't had a straight answer either- I mentioned to the second hospital that I'd previously been diagnosed with PCO, and they just said "oh no, you haven't got that". If anyone's wrong it's likely to be them, though - the first hospital did blood tests and multiple ultrasounds, and the second lot just did one ultrasound, and weren't particularly looking for PCO as by that time I'd been referred for IVF for blocked Fallopian tubes. I'm back into the cycle of referrals and tests now (I have an appointment with the infertility clinic next week and will find out from them what happens next and how long it all takes), so will wait with interest to see what they say this time round.

My experience does suggest that you can have it and have it clear up - and I think there is some evidence to the effect that women with PCOS are much less fertile than others in their 20s, but that by the time they hit their 30s their chances aren't much worse than anyone else's.

2ndDestiny Wed 19-Aug-09 10:34:56

Sadly, I seem to be bucking that trend, having conceived instantly on 2 occasions (one just last year) which made me think I was uber-fertile, but now (having just hit 30) I have simply stopped ovulating. I still have no children. Still clinging onto the hope that this is only a temporary state of affairs as per my gynae's advice, but some days it's hard to believe it.

Petsville if you are going the IVF route for other reasons anyway, I strongly suspect the fact that you may or may not have PCO won't affect the success of your treatment. I have read that PCOS ladies tend to have a good response to stimulation and high success rates with IVF - apparently we tend to have good ovarian reserves, it's just getting the damn ovaries to pop the eggs out when they're supposed to that's the problem! I really appreciate your sharing your experiences with me, it's nice to chat to others who are struggling with fertility problems - it's such an emotional thing to go through and nothing in life really prepares you for it.

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