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

@murmurlade

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

Hey! Yes it can be a longer road with PCOS but there are lots of options! You can be started on metformin which is supposed to help with cycle regulation and there's also research to support it helps to prevent miscarriage. I am taking this along with inositol... it hasn't done much for my cycles but I have unintentionally lost weight with it which indicates my PCOS is insulin resistant! My husband was referred for a SA from the GP back in September, and also by the NHS consultant in Dec and still hasn't had an appt through. Most consultants will want a SA before starting any treatment to make sure there is no male factor. We have since gone private and he had the SA done within weeks. Currently on a 6 month cycle of Letrozole and did ovulate on first cycle with this so now seeing what happens over the next few months! Hope all goes well with your journey 🤞🏻 xxxx

Hi @SammyG0303 thanks so much for the info! Really appreciate it.

And do they automatically do an HSG/hycosy before you start any medication? Your experience has made it seem less like something to fear which is great :)

Masses of luck on the Letrozole! Ovulating would be a dream 😄 hope you get a positive really soon and that you don't feel too bad on the drugs! X

Hey @murmurlade
🙂 I found this site really helpful when we were going through all the investigations!
Yes, my NHS consultant sent me for a HSG and my private consultant wanted the results of that before starting any treatment, but I think some consultants will start meds without it. It really wasn't as bad as what the internet says!!!
For me I think the worst part is waiting for appts and investigations, once you've got a plan it seemed easier as there was a path to follow!
Have you been referred?
I know, first time I've ovulated in over a year so I'm pleased the ovaries knew what to do!!! Xx

Yeah I can totally understand that having a plan gives you back a little bit of control!

I think I'm still in the denial stage maybe, I knew it could take a long time to have a baby but really never thought there would be anything physical that would make it harder. I'm struggling to come to terms with the idea that I can't really 'wait and see'. I've just recently had another scan showing I hadn't ovulated and all my follicles were small, when I really expected that I had. So the sonographer said you need to ask your GP to refer you (hopefully that's not a battle. I don't think it necessarily will be as she seemed understanding).

I'll get there! And positive people like you really help!!!

Did you go private to speed things up? Was covid an issue?

I agree, I found myself in a difficult place when it was all coming to light last year and it's difficult to accept. Especially when friends and family around seem to fall pregnant so easily, you wonder why it's so difficult for yourself. I found talking about it helped though!
Ah I really hope you have a proactive GP and get a quick referral! Have everything crossed for you.
Yeh we decided to go private as the wait for the NHS appointments and referrals were so long and we just felt in complete limbo. I'm really glad we did! X

Thanks so much. You genuinely have made me feel so much better. Loads of luck! And keep us posted! X

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

His tests should be done around the same time as yours are done, certainly not months later.

Subfertility is not the sole preserve here of the female. Bear in mind too that one "poor" semen analysis if that transpires is not indicative in itself of there being male factor issues. Repeated semen analysis should be performed anyway.

Thanks Attila! That's really helpful. Actually I've seen you give amazing practical advice on a few threads. Made me wonder if you were a doctor yourself? That's not to try and get advice by the way maybe don't answer that! Do you have PCOS too?

How is everyone getting on? Really interested to hear, if anyone wants to share x

Hi! I’m a little behind everyone here I think. I had my ultrasound yesterday which confirmed PCOS.

I’ve also finally come on my period after a mammoth 142 day cycle! My GP said she’d call this week and refer me to the NHS fertility clinic but she said waiting times are quite bad. We’ve got a private appt on 12th April to discuss options.

Feeling positive that I have some answers and starting to be able to plan for the future. Am armed with myo-inositol and hoping for a shorter cycle this time around! How’s everyone else?

Hey @Flowersandfireworks congrats, 142 days sounds hellish. I was losing the will to live at 90 days so I salute you!! Do you have any of the other symptoms of PCOS or just found on ultrasound? (That was my own experience and so now I want to find out if I am insulin resistant and should change my diet, because my testosterone etc was in the normal range.)

Let us know how you get on with inositol!

Haha it definitely taught me a lesson in patience! My testosterone was quite high and my AMH was very high (128). Have you had your bloods done?

I started investigations after 3 months with no period which was my main symptom. I’m a few lb overweight and my skin isn’t the best but neither are a big problem. I think it just effects different people so differently!

Yeah I've had bloods but not AMH, I would be interested to know about that. I don't know why but when I speak to the doctor ALL my questions go out of my head!

And don't you think it's so weird how your period starts just when they start doing investigations..? That happened to me too. It KNOWS!

Do you have any children already? (I don't.)

Hi @murmurlade and @Flowersandfireworks!

I don't seem to get notifications and then found all the posts in my junk mail! 🤦🏼‍♀️

Not sure if it's helpful but my referral for the fertility clinic was put in on the 10th of February. My GP told me that pre covid it was a 12 week wait for an initial appointment and that due to covid it will be a longer wait. She explained that our initial appointment will just be a discussion around options and that from this they may want to book me in for more investigations and will also want to book my partner in for checks too. So... realistically it's going to be some time before I get started on treatment I think.

I'm a key worker and have been offered the vaccine twice but kept refusing as I wasn't sure how that would impact on receiving treatment etc. Anyway, because it's now looking like it's going to be a while away I had my vaccine last week. So even though our chances of conceiving naturally are slim, we've still decided to use protection until after my second vaccine in June. Hopefully by then we'll be looking to begin treatment. I'm feeling in a much better place now that our referral has went in and not feeling as stressed! Still feeling frustrated with the lack of info or support on PCOS though!

I feel your pain with long cycles! I'm currently on day CD166. I've been taking My Ova plus for two months now and it hasn't seemed to make a difference. I've found that cutting out dairy has made a massive difference to my skin... although I still like to have treats at the weekends as I don't want to make myself intolerant, I love cheese too much! I've also reduced my carb intake and if I do have carbs I'll have whole grain or brown instead of white. Again though, I still like to have treats at the weekend.

Hope everyone is keeping okay!

Hi @KA93 sorry it's taken me so long to come back to this! Really glad for you that you now have a plan, and a date to look forward to. Hopefully once you're with the clinic you will feel that there are people there focusing on helping you. My GP is lovely but it's obviously not their priority.

I've been told I won't get referred until 1 year of trying despite v long cycles and several scans showing I'm not ovulating. Instead they're putting me on Metformin until the 1 year point. It seems fair enough. Worth a try though I don't fancy some of the side effects! Has anyone else had that?

Good evening everyone, I have been so happy to read this thread, I could be reading about myself. TCC since July, went to clinic in Nov bloods and all ok, next step was scans which showed no blockages but mild polycistic ovarys. Cycle was usually 40 days. In jan was prescribed metformin 2 tabs a day and last month upped to 3 tabs a day. Cycle has shorted 2 days each month ( last cycle 32 days) which is positive and I've lost 4.5kgs buy i had been trying to loose weight so cant be sure if they helped . No success tcc yet, have folow up app with clinc this week not sure what to do, wedding has been postponed to early spring next year because of covid, not sure whether to ask for iui and see if that works or keep trying now that cycles seem OK. They had said thr ovulation tests don't work if you have polycistic ovarys which is annoying isn't it.

Anyway I would love to chat and we can all learn something

Hi @EB86 it's weirdly such a relief to hear from other people isn't it! I feel in a strange hinterland between 'oh loads of people with PCOS have kids' and 'how long will I need to wait for IVF when everything else fails'...

Congrats on your weight loss that's fantastic! I seriously need to chill out on the carbs and have got half a stone to lose. Hope the drug has the same effect on me as it did you! I definitely feel your pain about not being able to track ovulation. I would kill for a 28 day cycle!

Good luck at the clinic this week, keep us posted. Do you mean you've been referred to the fertility clinic already? May I ask how old you are? (I'm 30.)

@murmurlade

Hi *@EB86* it's weirdly such a relief to hear from other people isn't it! I feel in a strange hinterland between 'oh loads of people with PCOS have kids' and 'how long will I need to wait for IVF when everything else fails'...

Congrats on your weight loss that's fantastic! I seriously need to chill out on the carbs and have got half a stone to lose. Hope the drug has the same effect on me as it did you! I definitely feel your pain about not being able to track ovulation. I would kill for a 28 day cycle!

Good luck at the clinic this week, keep us posted. Do you mean you've been referred to the fertility clinic already? May I ask how old you are? (I'm 30.)

So I am 34, 35 in Aug. Yes I have been going to Fertility clinic since October. Previously I had endometriosis and had surgery to remove it, because of this my gp advised to go to clinic sooner than a year. Turns out no endometriosis damage or causes, just surprise polycistic ovarys lol I hope the tablets go well for you. O had read some horror stories of side effects but I didbt experience anything bad, maybe slight heartburn occasionally so I questioned if they were working at all. To help loose, I signed up to meave madden website and the exercises are really doable and I thinj that had helped too.

Hi! Just thought I’d pop on to update. I saw a private doctor this morning who has prescribed me letrozole to try this month. Will go back in a week for another scan to see if it’s been effective in making me ovulate. Have you had your first appt yet @KA93? CD166 is a crazy long cycle!

@EB86 well done on the weight loss! I’ve managed half a stone over the last couple of months but it’s been a slog! How did your follow up appointment go?

@murmurlade how are you getting on with metformin? I’m 32 and trying for our first :)

Ooh that's great flowers! Let us know next week, got everything crossed for you that you ovulate!

I'm on 500mg of metformin at the mo with no side effects at all. Yesterday tried upping it to 1000mg and let's just say I had some immediate and horrific side effects 😄 so a bit scared to take 2 again today... am on CD54 so not as long as others but no sign at all of AF.

Question for everyone if you're comfortable answering... do you still DTD every other day throughout even on super long cycles? I lose momentum at about day 35 which is daft I know. It's so hard when you know you aren't ovulating. I go into each new cycle with such optimism and such good intentions...

Oh I would love to join in here! I was diagnosed with PCOS in my early thirties, but expect it was always there, just masked by the pill

Bit of a lengthy, lonely and frustrating TTC journey (not helped by the NHS and GP not referring) but had success with Clomid and Metformin in combination and had DC :) so it can be done!

I would like to have more children and obviously now I am older, back in the same place, praying for this to work again.

@Flowersandfireworks

Hi! Just thought I’d pop on to update. I saw a private doctor this morning who has prescribed me letrozole to try this month. Will go back in a week for another scan to see if it’s been effective in making me ovulate. Have you had your first appt yet *@KA93*? CD166 is a crazy long cycle!

@EB86 well done on the weight loss! I’ve managed half a stone over the last couple of months but it’s been a slog! How did your follow up appointment go?

@murmurlade how are you getting on with metformin? I’m 32 and trying for our first :)

My app went ok, we are moving to the next stage now, iui when my next cycle starts. Nervous about this but we just gave to go with the flow. Would love if it happened naturally this cycle but should not get my hopes up. They also said my tsh levels showed high in my bloods so I'm on a thyroid tablet now, the joys

Hi Ladies.

Sorry for a delayed response... again. 🤦🏼‍♀️

Hi @murmurlade That’s frustrating they can’t place a referral until you’ve been trying for a year. I was initially told that as well, but after my scan she put the referral in there and then. We’ve now officially been TTC for a year, so not too far off the mark. That’s so good that you were offered Metformin in the meantime.
Regarding your question of DTD every other day. Absolutely noooo way! My cycles are 100 days +, I feel it’s physically impossible haha! Even at the beginning when I had a slightly shorter cycle we gave up by day 30/40. It was just too much and put too much of a strain on our relationship. Never wanted it to become obsessive or a chore. If the clinic asks though, I’ll tell them we’ve been DTD every few days. I don’t want that to be a fall back.

Hi @EB86 Can I ask if you’re going through a private clinic? Or through the Nhs? Exciting news for IUI. Fingers crossed for you! Do they always offer IUI before IVF? I’ve heard someone say that if you’re successful with IUI then if you TTC with a second child then you’re not offered IVF... is that right?

Hi @Flowersandfireworks I’ve not had my first appointment yet.. think it could still be a while! How are you getting on with Letrozole? I’ve got my fingers crossed for you!

Hi @freakinghell84 :) so lovely to hear that you were able to have DC. I had always wondered what would happen the second time round! Do you automatically get referred back to fertility clinic? Or do you have to wait another full year of TTC?

So a few questions for you all. Are metmorfin and Letrozole the same as Clomid?

Also.. apologies in advance if this is TMI! So on CD 174 I started to have brown spotting. This went on for a few days and then on CD 177 I started to have a little bleed and I was over the moon! It only lasted a day and then another 3 days it was back to brown spotting. When I was on the pill I had really heavy periods, so not too sure what a natural AF looks like? It also definitely doesn’t look like I’ve ovulated.. BBT tracking and the odd ovulation stick. Do you think I should have counted that as a new cycle? Or am I on CD 182?

I’m going to get better at replying so that my replies aren’t so lengthy!

Hi all! Hoping I can jump on this thread too. Pcos diagnosed in December, gp currently been unable to tell if I ovulate or not due to irregular periods so timing of day 21 bloods has been hard to get right. First fertility appointment (via phone) is on Tuesday... I'm hoping here they'll tell me that they'll be able to time my bloods correctly just to know for sure if I ovulate (I've just assumed I don't, prepare for the worst attitude I suppose)
I've lost just over 2.5 stone since Jan doing the keto diet. I still have some weight to lose but it's a huge step in the right direction. I've also just ordered my-ova and will start taking that ASAP.
My periods on the whole average around 32 days but can be anything up to 40 days (maybe once a year) late ovulation sticks too showing around day 22 so yes.
We've had to put a hold on trying for a year due to my dh having cancer and chemo treatment.

Fat fingers posted too soon 🤣 anyway yes, his treatment meant that we have to wait until the end of June before we can start again and I'm struggling a little with feeling like I've lost a whole year and now I'm 33 I'm having a dramatic panic (I am of course most happy that I still have my husband but the baby stuff is still tough)