Trying to conceive with PCOS

[NonnyBunny]

Hello, I was hoping to get some advice on PCOS and some symptoms I'm experiencing. I was diagnosed with PCOS at 15, and was on the pill for most of the last 20 years to regulate it, but came off to start TTC about 9 months ago, and have only had 2 periods since - the first after 5 months, then one 7 weeks after that.

It is now 6 weeks since my last period and I have been having stomach cramps pretty much constantly for about 3 weeks. It started with a few days of nausea and I dared to hope I might be pregnant but a pregnancy test was negative. Since then I've stopped feeling sick but the cramps have continued and are really starting to get me down.

I was just wondering whether anyone else has had ongoing cramps like this, and figured out the cause?

Any advice / reassurance would be very much appreciated

It sounds like your body might be gearing up for another period at the moment, which would explain the feelings you're getting at the moment, and could possibly be having the cramping etc due to the long gaps between cycles (only a guess though from my own experiences).
My consultant believes I have PCOS (just waiting on the final diagnosis), and I have irregular cycles ranging between 35-75 day intervals. I was on the pill for 10 years solid, and it took four months for me to have a bleed at all after finishing taking it, and then another two years to settle into anything like a pattern, though as you can see, it's hardly a pattern at all!
Have you been to see your gp yet?

Thanks for your reply! Yes I think you are probably right, just a very long-winded lead up to a period. I had similar symptoms when I first came off pill and the GP thought it was my body 'trying' to ovulate despite my hormones being all over the place- but she wasn't really sure. I've been referred for fertility treatment even though it's only been 9 months due to my age / PCOS and the initial consultation is in 3 weeks so hopefully they will have answers / advice for me too!
That's reassuring that you eventually got into some kind of pattern although I imagine 35-75 days is still very frustrating! I hope they get confirmation of diagnosis for you soon - did they say they'd treat you in any way if that's what it is?
I only ever got offered the pill as a solution but hopefully treatments have advanced a bit in the past 2 decades! I miss being on the pill as had light periods, no spots, hardly any cramps... But I realise to have a chance of getting pregnant I'll just have to put up with the symptoms for a while.
I'm kind of hoping I'll get into a 7 week cycle (would be better than nothing!) but still not that useful for figuring out when I might ovulate...

Me and my DH are just waiting to start fertility treatment, we're just coming to the end of all our tests now, and once they've been done we'll start treatment. The first is clomid to cause ovulation, which will be for six months, and the last is IUI, with a couple more treatments in between.
I don't think there's any plans to sort out the PCOS itself or lessen the symptoms in general, but we do have a fertility treatment plan, as we've been ttc for 14 cycles in total. So long as we get help with that then I can deal with the PCOS symptoms.
I hope your consultation goes well, there will probably already be a treatment plan drawn up for you, which is what happened with us.

I was the same & can totally relate to you, I had PCOS diagnosed at 15 and on the pill until 28 when I stopped to TTC. Like you you, i only had about 3 periods that first year and it was obvious I never ovulated. On hyper alert for pregnancy, I got very confused by all sorts of ailments. The cramping could be cysts forming on your ovaries once more?

Eventually I went to the GP, who referred me to a fertility specialist. After checking my tubes, the next step was Clomid, then if that didn't work after 3 months (ie 3 cycles), IVF (only 1 free round, though some health authorities offer up to 3 depending on age for child-less couples). While the referral went through I saw an endocrinologist, I was encouraged to lose weight, even losing 10-15% weight can kick start sluggish ovaries (which were thankfully fairly cyst-free due to the pill over a long period). I was also put on Metformin (the slow release one as it was kinder to my IBS gut) to help regulate my sugar levels, which also helped. I joined a gym, lost the weight, and just as I was about to start Clomid I got pregnant naturally just as I turned 30! Incidentally my first pregnancy symptom was really really sore boobs and tender nipples (that symptom was noticeable but less marked for baby 2 & 3) and my first pregnancy tests were all negative until 3 weeks after I conceived (I think I possibly ovulated late in a cycle) so dont hesitate to retest at weekly intervals if you still have symptoms.

After the baby, I refused to take the pill again and kept track of my cycles and tried to determine if and when I ovulated. As my periods returned with some regularity I had blood tests over 3 months that showed that I ovulated once, probably not the second time (probably tested too soon, my cycles were 25-38 days so hard to pinpoint mid cycle), and not the 3rd. I became really good at spotting ovulation (cm etc), and when we were ready to TTC number 2 I amazingly got pregnant first time. Same thing with number 3. Although our family is complete, I am never going back on the pill again!

At 35 neither age nor your ovaries are sadly on your side, so go to your GP now and say it has been a year, if not 2 (I was advised so by a nurse who thought I had been an idiot for waiting so long before seeking help). Referral takes time, use that time to TTC naturally. You are not infertile, just a lot less fertile than most, so get on track to get all the drugs you will need. Thankfully Clomid, though not the most pleasant, works well for PCOS sufferers like us. If you are overweight, try to lose some weight. You can take comfort that your first baby might "fix" you and you might still be able to have more than one.

Good luck!

(Sorry, just spotted you are already referred to see a specialist)

Hi Sapat, good to hear that I am not the only one who has had this kind of experience, and very happy to hear that things worked out for you, and you went on to have three children. I realise I am some years older than you were when you started this whole process so that might make things more difficult - I was always aware that this would be an issue but didn't meet someone who I wanted to ttc with until relatively recently...

I think you are right about being on hyper-alert for pregnancy which probably makes it harder to ignore the cramps and ovary pain because i tend to think they mean something.... but I suspect that as you and adora1985 suggested, it is either my body trying to have a period, or caused by cysts forming on my ovaries. I haven't done another pregnancy test since the one about 3 weeks ago but my gut instinct tells me that I am not pregnant and I don't want to put myself through a test unnecessarily!

Luckily I was referred by my very sympathetic GP very quickly (she put the wheels in motion after only a few months, after blood tests suggested there was nothing much going on for me in terms of ovulation. My blood tests and my partner's sperm test results were sent across, and we had only a 2 month wait to be invited for the initial consultation, which is in about 3 weeks.

Does anyone know what the procedure tends to be at that initial consultation? Are there usually further tests before they start you on treatments (e.g., Clomid)? I think in NI it's 3 cycles of Clomid and 3 of IVF if necessary...

A few people have mentioned losing weight, but I am on the low side of the normal BMI range for my height (BMI about 19 I think) so I don't think that would do much good in my case.

What is the purpose of taking Metformin?

That's interesting that you found you were only ovulating one time out of 3 cycles - I just assumed that if you were having periods that meant you were ovulating, which shows that I probably need to learn more about what is going on inside me!

Thanks very much to both of you for the advice! Adora1985, good luck with the treatment, I hope it works out well for you.

Hey. Glad I've found this post! I'm new to the whole forum thing but I really need advice! I don't know what all the acronyms are though sorry! Myself and my hubby got married last year and have decided to try for a baby. I've got PCOS, was diagnosed when I was about 18. Been on the mini pill for about 5 years and stopped taking it about 6 weeks ago. Felt brilliant after stopping taking it, but the last 2 weeks been very crampy, now my moods have suddenly started going out of control, I feel emotional so bad! Been bloated, feeling slightly sick and a few other bits which is a bit TMI. Wondered and kind of hoped if I may be pregnant however test was negative. I've had no period either. I'm so confused at how to keep track of everything when you don't have regular cycles etc. I feel like I'm completely out of sync with my body and have no idea what's going on, completely out of control! I am overweight but have lost 5 stone in the last year and still eating healthy etc. Any one have any helpful words and advice? Thank you so much x

Met forming is to try and help weight loss, so wouldn't be any use to you, with your bmi being very healthy anyway.
My experience is a bit long winded, as it happened over a while, and we've got the added complication that my DH had cancer not long after we met, so have had issues with sperm analysis results at varying points.
Anyway, for us we tried for 9 cycles initially and had 2 mcs during this time. We then stopped and restarted last September, at which point I went to my gp, who referred us onto to a fertility consultant due to our combined history. My DH was sent for an up to date SA, and I was referred for a number of blood tests-day 3, day 21, plus a whole other batch of tests, I think there was about a dozen in total. Once these came back they were referred onto the consultant, and our appointment was booked in for the start of Nov, but had to be changed to the next available app at the end of Dec (we were out of the country for the first app).
At the initial consultation you're given a heap of forms to fill in, including personal details, welfare of the child forms to fill in, and medical history questions to answer. You keep a copy and the clinic keep the other copy.
When we saw the consultant she then asked is both a load of questions-what major illnesses had we had in the past, past pregnancies, sexual history, details about immediate family medical history, immediate family pregnancy issues if any, and then pinpointed any issues she'd derived from this info.
In our case she'd already worked out a treatment plan for us, as she believes the problem is PCOS due to my history. We were talked through this treatment plan, given leaflets and booklets to read, and told what tests needed booking in.
The plan for us was to confirm PCOS via a HSG, then clomid, followed by a lap and dye, ovarian drilling and then IUI if none of that worked.
I've had the HSG but apparently needed an ultrasound to confirm the PCOS, which I had to book in for a later date. Once the ultrasound is done, we'll see the consultant again and then start on clomid.

Fergiefairy, I really feel for you! I guess the problem is, the pill keeps everything nice and regulated if you have PCOS, and when you come off it, things can go all over the place- I had very similar symptoms to you. When you are trying to get pregnant, as adora1985 pointed out to me, I think you look for signs of pregnancy everywhere, so symptoms that might be your body adjusting to being off the pill appear to be pregnancy related. I took 5 months to have a period, then had another one 2 months after that - I suspect you'll have to wait a while for your first period. Even if you didn't have PCOS, the body can take a while to adjust to being off the pill. Hang in there though - and go and see your doctor for some reassurance! They might be able to suggest how you can regulate various symptoms of PCOS while off the pill.

Adora1985, thanks so much for that detail about your treatment and the initial consultation. I didn't realise there were so many stages prior to IUI - that's good to know that they throw everything at the issue to sort it out. Best of luck with the Clomid, I hear it can work wonders for those of us with PCOS - it has done for a couple of my friends.

I was diagnosed with PCOS at 15, been on Dianette for 17 yrs, came off for 2 cycles in 2014 for fertility testing with specialist. Bloods didn't show PCOS and specialist said I must have been misdiagnosed. Having suffered with acne and excess body hair I knew this wasn't the case. Specialist had to eat her words on scan as both ovaries looked like bunches of grapes they were so cystic. Hadn't shown up on bloods as only 1st real cycle, was ovulating on scan. Went back on pill for 6 months. Those 2 cycles I had cramps throughout.

My BMI is under 19, this is the advice I was given:

To start trying to conceive straight after coming off pill, no waiting.
If not successful within 3 cycles to go on clomid and possibly metformin.
May need to go back on pill to reduce cysts and then try cycle again.

Insulin Regulation
Need to start low GI diet. Reduce sugar intake.
Should also do 5/2 fasting diet as improves insulin production and sensitivity.
Regular exercise in morning to improve release of insulin like growth factor.

Metformin is not just for weight loss! It is to regulate your blood glucose levels, weight loss is a side effect of better glucose control. PCOS causes problems with glucose metabolism. Glucose metabolism is linked to ovulation! This is why metformin is prescribed for PCOS.

I was recommended Inositol by another mumsnetter. I take 1g twice daily.
I'm on cycle 2 now. Started Inositol month before 1st cycle, so now 3 months. Spent month before cycle on no carbs past 5pm, lost some body fat, continued through cycle 1. AF arrived and I gave up majorly!!! I have been stuffing myself stupid for 3 weeks but still taking Inositol and have continued to lose body fat! It has definitely changed my metabolism! I recommend for all PCOS suffers. I also have IBS and it hasn't aggravated it to much, a little to start with but now calmed down. Zita West talks about it in her article.

Women with PCOS also have higher risk of MC and diabetes due to glucose metabolism.

www.dailymail.co.uk/health/article-2947717/How-eat-pregnant-Chilli-fat-milk-chicken-citrus-fruits-help-woman-conceive-says-fertility-expert.html

examine.com/supplements/Inositol/#summary7-0

www.mypcos.info/1/q-a/is-dci-safe-to-take-during-pregnancy/