PCOS support

[KA93]

Hi everyone,

I'm new to this and this is my first post! Came off my pill last April and been TTC ever since. I've had a lot of issues with my cycles and have only had two periods since last April. GP took bloods etc but weren't willing to look into any further as I needed to wait until I had been a year off my pill. Due to the stress of my cycles being all over the place and other symptoms I booked in for a private scan and it's now been confirmed I have PCOS. My GP has now referred us to the fertility clinic and we'll find out what our options are. My scan showed that I had an excess of 90 antral follicles on my ovaries. I was just wondering what others experiences of these follicles were? I am a healthy weight which is why I think it's went undetected for so long (but since coming off the pill I have found I'm putting on weight quite rapidly). I'm just wondering what others experiences are of having PCOS and their experience of their TTC journey? What has helped etc?

Thanks, Kayleigh x

Hi KA93

Wow, your story sounds quite similar to mine! I had the same issue and ended up going private for a scan which is where I got diagnosed with PCOS. The consultant at the clinic I visited recommended I start of with a supplement called myo-inositol. It's a natural substance produced by the body which helps with insulin resistance. I also have lean PCOS so I didn't realise I might have an issue with insulin.

I started taking it about 3 months ago and my latest cycle has been 28 days. I'm obviously really happy with that result (hoping it continues...) and would recommend it if you want to try something you can buy yourself. I get a brand called MyOva from Amazon. Apparently it works best when taken with folate so I added that in as well, and a load of other supplements like a multivitamin etc.

I also tried to cut back on sugar and eat a diet heavier in whole grains. Most people recommend a low GI diet for PCOS.

The next stage if you went to see a fertility specialist would likely be either a drug called Chlomid or one called Letrazole. These work in different ways but both help to induce ovulation.

The plus side to PCOS is that it means you'll normally have a high egg reserve. The problem is actually getting your body to ovulate one of the damn things!

Good luck! Wishing you all the best.

Hi @KA93 you’re a little ahead of me but think we might be in similar situations. I came of the pill at the end of may, had fairly regular cycles for a few months but now haven’t had anything since November (cd 97 and counting...) GP did bloods and my AMH was 128 which she said is really high and suggests PCOS (which would also explain my awful skin and the extra 10lb that I just can’t shift!).

I’m waiting on a call to discuss next steps and will go for a private scan if GP can’t do anything g yet.

No wisdom to share but wanted to say hi and show some solidarity!

@Patienceisnotmyvirtue great to hear that you’ve managed to get regular cycles! Did you start taking your supplement mid-cycle? Will definitely give that a try. How long have you been TTC?

@Flowersandfireworks

Well I've only had one cycle at that length so far, so it's promising but I can't say if it's going to be my new normal yet.

Yes, you can start taking it whenever. It takes a while to build up in your system and have an effect on your hormones, so you have to stick with it for a while. It can take up to 3 months to see results.

It'a apparently a bit like Metformin, which is often prescribed to people with PCOS. It doesn't work for everyone apparently - it depends if your PCOS is due to insulin resistance, there are different types.

I've only been 'properly' TTC for 6 months, but I was trying to get control of my cycles for a while as I knew we wanted to have a baby soon. That's how I found out about the PCOS - I also went for a private scan as my GP wouldn't investigate my bizarre cycles, where they found a LOT of antral follicles.

We unfortunately also have a male factor problem so it's looking like we might need to go down the ICSI route. Again, we wouldn't have known there was a problem if we hadn't had the PCOS diagnosis, as that caused my GP to refer me to the fertility specialists, and she said we should also have a sperm analysis at the same time. So in a way, I'm weirdly grateful for having PCOS as otherwise we'd just have been trying for ages not knowing why it wasn't working.

@Patienceisnotmyvirtue thanks for your message! :) It's so good to hear that there's others out there in the same boat... I've not really heard of anyone around me that has PCOS, and didn't really know much about it until I started having problems. That's so good to hear that you've managed to regulate your cycles. I've not had any tests on insulin resistance yet but I'm booked in for bloods in two weeks to check for diabetes... I take it that's where they'll detect my insulin levels? If I'm in a similar boat then I'll definitely look into getting the myo tablets!

I've had wee look MyOva tablets and I'll definitely give them a shot. Can I ask what other tablets you took alongside them? I've been taken the conceive plus ovulation support tablets but they've not made any difference at all.

My GP did say that Chlomid would probably be the first step, but it could take a while for us to get our first appointment with the fertility clinic so I'm keen to try anything to get things going! :)

Hi @Flowersandfireworks! It definitely sounds like we're in the same boat. I had loads of bloods taken as well that suggested PCOS but my GP spoke with the gynaecologist and they came back to say they wouldn't look into any further until I was a full year off the pill. We weren't being impatient for TTC it was more the fact that I wasn't having any periods and all these symptoms were coming out of nowhere! I also put on weight quite quickly and my skin has been horrendous! So... for peace of mind we went private. I'm so glad we did it and although it wasn't the news we were expecting we've saved ourselves a lot of time!

@Patienceisnotmyvirtue so sorry hear to about the male factor! That is good that they've managed to detect that though! It's also good to hear that partners get checked out as well as that was a worry that I had too.

I seem to have similar issues.. I had my last depo over a year ago. I bled for 2 months, not proper period but spotting everyday etc. then again in august for 5-7 days. I now haven’t had a period since the beginning of august. I haven’t been to the doctors as I feel it’s pointless but I think something must be wrong😢. I think I may have PCOS too.. I’m 21, also a healthy weight and I feel broken😓

@ShannonMarieW I would definitely give your GP a little ring. I felt a little silly as well giving mines a ring with everything that's going on but at least it's been logged that you've been having issues with your cycle etc. They say if you've been actively TTC for a year with no success then you should give your GP a little
call. So if you're having issues with your cycle on top of that then that's definitely a good reason to give them a call. I only had telephone appointments with my GP but she booked me in for blood tests etc. You'll be in a better position than I was because you've been off contraception for a full year. I totally understand how you feel as I felt that way too, but this is just one of these things that we can't control! There's so much they can do now to help as well. 😌

Thank you so much lovely, best of luck to you😌 will definitely be giving them a call! Thank you

Just thought I'd add that if you're not having periods, or are having them really infrequently, this isn't good for your body. I don't want to freak anyone out but not shedding your uterine lining can lead to an increased risk of the big C. It's important to make your GP aware if you haven't had a period for more than 3 months. There are drugs that you can be given to induce a period. I know that there's so much going on at the moment and none of us want to bother our doctor's unnecessarily, but it's actually a health risk as well as frustrating when TTC!

@Patienceisnotmyvirtue that’s really interesting. My GP said that the RCOG recommend they don’t investigate missing periods until after 9 months, which I thought was insane! She did my bloods because we’d been trying to conceive for a little while. I’ll ask her about that. Have ordered some myo-inositol, thanks for the recommendation. Figure it can’t hurt at this stage! Sorry to hear about the male factor and wishing you all the best for ICSI.

@ShannonMarieW It’s really hard being in limbo isn’t it. I was so worried about calling the doctor but she was really lovely about it. I could have cried when she said she’d send me for bloods! Definitely worth having the conversation.

I’m 32 so definitely a little impatient to get things moving. Will hopefully speak to my GP this week and then make a decision on going private.

Wishing everyone lots of luck with their next steps! It will happen for us

I have phoned them & will be getting a call back today. Thanks to you guys who made me feel comfortable to do so! Fingers crossed xx

@ShannonMarieW that's brilliant news! Good luck! 🥰

Hey,

I have PCOS and we also have issues with the sperm on DP's side. His semen analysis came back and it wasn't great.

My cycles are 76-144 days long, I've started taking Inosotil in a shake each morning (I did try the MyOva ones) but couldn't swallow them as they were huge.

I've had my bloods done they were normal, raised LH which is common in women with PCOS and I've had my vaginal scan. It showed large follicles and scarring...

We've decided to try clomid first rather than go straight to the ICSI route. Just waiting for my bleed so I can book my HSG.

Sending luck to you all. It's a horrible situation for us to be in.

Hello!
Thought I'd say hello as think I'm also in the same boat as all of you.
I came off the pill in March 2020 and have had 1 natural period since. I had a scan and was confirmed polycystic ovaries, a bit of a shock as I also have no symptoms and the pill seems to have masked my cycles for years. It appears mine are severely polycystic with loads of follicles.
My husband and I were referred to Fertility Clinic in aug (we lucky had a really proactive GP) but due to covid we were waiting forever so decided to go private in Dec. We had all tests (AMH, scan, sperm analysis and HSG) and I'm just in the process of inducing a period before I start taking Letrozole which should hopefully (fingers crossed) help me to ovulate so for the first time in a year of TTC, we might have a possibility of actually trying!
My consultant started me on Metformin and I have also been taking Myo-inositol and loads of other vitamins. I also went gluten free and I have unintentionally lost over half a stone from this so definately something to do with the insulin resistance. Unfortunately it did nothing for my cycles though.
Anyway, I would really recommend, if it's possible, to go private as it was so much quicker! Xx

@SammyG0303 was your HSG painful? I'm worried about that part. Crossing my fingers for you.

My fertility clinic have said that on the first day of my next bleed I need to ring and book my HSG for that week. I could be waiting ages for my next bleed. Could I request norethisterone (probably spelt wrong) from my GP to induce a bleed quicker?

@BritneyWeaver I had a bit of a nightmare with my HSG as the first time they couldn't do it because my cervix was completely closed! I had to go back a week later and the consultant did it, she had to use a clamp on my cervix as apparently it kept 'running away' from her lol, it was uncomfortable when they put the dye in but literally only for about 10 seconds! I took paracetamol and ibuprofen about half an hour before.
I had to induce a period for my HSG as well, my consultant told me to use my microgynon pill - 2x tablets a day for 1 week and it worked! Otherwise I would have been waiting ages for a period as well.
Don't worry too much about the HSG, it's really not as bad as it sounds and it's another thing ticked off to start getting help xxx

Hi ladies. It's so good to hear (but also not good because we're all in this horrible situation) everyone's stories! I'm still trying to get to grips with everything and didn't even know what a HSG was, so had to look it up! 🤦🏼‍♀️ Is the HSG procedure done by the fertility clinic or the GP? Looks like I've still got a long way to go.

@BritneyWeaver I was also told that Clomid would be the first option for us, so would be good to hear how you get on with it!

@SammyG0303 that's so great you're making progress! I'm also worried about how long we'll need to wait on our referral being picked up until we see someone at the fertility clinic. Unfortunately we can't really go any further privately but definitely pleased we payed for a private scan and saved some time. It's interesting to hear about the Gluten free diet. Are there any pages that I can have a look at that give some recommendations on a diet for PCOS. All my favourite things are apparently the worse thing for PCOS... 😭. It would also explain though why I've been feeling so rubbish and how I've put on weight since coming off the pill.

Good luck to everyone!! ❤️

Also... does anyone know if the excess follicles that we have go away once we have a period? I've got at least 90 at the moment and I can't work out if I'll continue to get more the longer I go without having a period... and if they do go away once I have a period. It's all such a mind field!

@KA93 I'm exactly the same as you, everything I love is bad for PCOS. The diets look so unappetising and I just know I'll struggle to maintain eating lentils, avacado and salads but I'll try

The HSG is done by the fertility clinic, I have to call them on the first day of my bleed. I'm going to speak to the doctor about speeding the bleed up. I'll be waiting for months otherwise.

I also have lean PCOS which I’ve always suspected but was medically diagnosed in 2018. Given we had been TTC for a year at that point, my GP referred me to a fertility specialist. The specialist put me on clomid and I fell pregnant twice during the course of a year and a half (both ended in miscarriages).

She then suggested we try IVF. Given the PCOS, I was put on short protocol treatment to try to prevent overstimulation. We had a single embryo transfer and we now have twins 🙂 The prognosis is generally positive for PCOS with some fertility treatment.

Obviously MFI etc will complicate matters and the course of treatment recommended to some of you may therefore be different. Good luck to you all

I'm not sure if it's a coincidence or not but thought I'd share anyway. I started taking Inosotil powder from MyProteinWorld and I've just came on my period, which will be my first ever 31 day cycle since taking it.

I've called the clinic and just waiting for a slot for the HSG test. Eek!

How is everyone?

@SEtwins it's amazing to hear a success story! I have heard that going through IVF treatment can increase chances of multiple pregnancies... especially because we produce so many follicles! Thank you for giving a little bit of hope. 😌

@BritneyWeaver I'm so sorry I'm only just getting round to replying! Had a month feeling really frustrated and down about everything and couldn't face talking about it anymore. That's amazing news about your cycle! I've been on Myoplus for nearly a month now and still no sign of AF. I'm going to keep with it to see if it helps. Would love to hear how you get on with your appointment. Good luck! Xx

I think I've found my people. (Though wouldn't we all rather be over on even the conception boards, let alone the pregnancy boards...) 😄 I found out a few weeks ago that I more than likely have PCOS. PCO on scans and very long/random cycles, though not really the other physical symptoms.

I am feeling really low today because I've been reading about how it's not only conceiving that's made more difficult by PCOS, but keeping a pregnancy going. The miscarriage rates are a bit upsetting. I hope it's ok to talk about that and it's not intended to be a downer!I'm trying to find ways to stay positive and not unnecessarily worry about steps well ahead of me. I know some people will have been trying far longer than me, which is 7 months. Does anyone know if fertility clinics offer drugs to help you hold on to the pregnancy if you are lucky enough to conceive on clomid?

I am looking at taking inositol while I am waiting for my referral so was really interested to read all your comments about this.

Wishing lots of luck to everyone xxx

Oh my other question was whether when you get referred to an NHS clinic, whether they automatically do SA for your partner at the same time, or if that's further down the line? Thanks so much