TTC - PCOS and friends sharing they’re pregnant

[RowsOfFlowers]

Hi.
I am recently married, and my partner and I have been ttc for the past few months. Unfortunately I’ve been navigating quite a few health issues, and I told my friends I was going for a scan on Monday and that I could have PCOS. PCOS has been confirmed, but neither of the friends I told asked me how it went. In fact one of them messaged me today to tell me she was pregnant and sent a pic of the baby scan. I said congratulations and then she says how was your scan.

I am feeling really hurt and upset by the lack of sensitivity and I wondered if others have experienced similar in their friendships and how you’ve navigated this?

I don’t know whether to say something but I feel so upset and angry right now.

thanks all

Because PCOS is so common they may not realise the degree to which you were worried about it, particularly as it seems you've been TTC for months not years. Oppositely, it's possible they don't know what it is and how it can be linked to fertility issues in some women.

However, there's no point having resentment festering so just tell them you're feeling a bit sensitive.

PCOS can be very surmountable. Good luck.

Im sorry your feeling disheartened but in all honesty , your in the very early stages of ttc, there shouldnt really be any resentfulness or hurting on your end with your friends pregnancy news though no one can tell you what you should be feeling. Do your friends no how upset you are about the scan and your diagnosis? Have you spoken to them about your worries? You also dont know your friends struggles with trying to conceive and she could have been hiding a very lengthy ttc journey, she could be having her own struggles, I think you should be happy for her and maybe talk to your friends openly about feeling a little sensitive about your diagnosis and journey so far. The ttc journey can be hard enough without adding extra unnecessary stress and worry. Congratulate your friend and support her and continue on your journey.

Well they don’t know how upset I am or how much I’m struggling because they haven’t even asked how I am or how it went.

That's a really unpleasant reply. Lots of people never get past the very early stage of TTC (goodness knows; plenty of people never get that far). Should they not be upset to find out they may not be able to have children? Are you only allowed to be sad if you got further on?

I think they are being self-centred and, as suggested, probably they haven't realised that your scan isn't just a formality or a minor issue.

Unfortunately, I think people often aren't very well informed about infertility, so you might need to be a bit direct and, as things go on, give them a heads up with 'so, you know I'm having a rough time at the moment ...'. If they are good friends it will give them the nudge to realise you need some TLC.

@SarahAndQuack disagree it was unpleasant. Unsure what you mean by many people not getting past the early stages of TTC but it's very common to take more than a few months and not yet a sign of a big issue.

While PCOS is a metabolic disorder which should be looked into fully in terms of insulin resistance etc in fertility terms it's very common. Conception can often happen straightforwardly with weight loss where applicable or ovulation induction. Where that doesn't result in conception, IVF works very well for women with PCOS. It does not mean you can't have children.

You mut be aware some people never get past the early stages of TTC, surely? There are lots of women who simply never manage to have babies.

PCOS is common; IVF can work - but IVF doesn't work 'very well' for anyone, and it is a postcode lottery, and not available to everyone. It's also pretty gruelling.

It's not unreasonable at all for the OP to feel upset and daunted, and it would be nice if her friends were a bit less self-centred, surely?

I do think it is unpleasant and unnecessary to tell someone they 'shouldn't' be hurting. It doesn't help, does it? If she is hurting, she is.

@SarahAndQuack "Early stages of trying to conceive" in this thread just means "have been trying to conceive for a few months". It is usually a much longer period of time before someone is considered to have subfertility. It therefore may not be obvious to friends that any sensitivity is needed so this needs to be communicated to receive it.

Yes, but my point is that some people never get past that point. Are you saying they're not allowed to feel sad? It's a nasty way to think. Different people are different, and everyone responds differently to situations. I don't think it is helpful or kind to tell the OP she 'shouldn't' feel hurt.

Absolutely fine to focus on the positives and say, as you have done, that there are good medical reasons to be hopeful. But an awful lot of nonsense is talked about fertility and infertility; a lot of people think (as you evidently do) that, if nothing else, the IVF fairy will come in waving a magic wand. I think often, people think this stuff because we don't talk enough, and honestly enough, about how difficult struggling to conceive can be. It's that culture of 'how dare you feel sad' that is damaging. IMHO.

@SarahAndQuack This is not really a big deal but I think there's a slightly strange language miscommunication going on. In the sense "early stages" has been used here, absolutely everyone in the world gets past that point by simple virtue of time passing. If someone has been trying for, say, 3 months, at the year point they have absolutely moved past the early stages of TTC and are either still trying or pregnant (or stopped trying).

Getting very upset about your fertility after a few months because some people in the world don't ever manage to conceive is somewhat jumping the gun. I didn't say OP shouldn't be upset, just pointed out that given it's only been a few months it may not be obvious to friends that it's already being experienced as a major ordeal and therefore communication is required rather than anger that they aren't mindreaders/ ignorant about potential PCOS challenges.

I've already explained, twice, why I picked up on that phrase.

Yes, of course, we all hope the OP will be just fine, but the poster who criticised her seems to think that you can only be sad about struggles with TTC if you've - what, done the time? experienced the correct number of losses? I don't know, but it's not a nice attitude.

I was reading a really good memoir today by a woman who is a midwife and also had fertility struggles, and what struck me was that, even though she ended up having an appallingly sad time (she lost two babies), she writes about the sadness and shock of the early stages with complete compassion and humanity, recognising her feelings then as being entirely valid. We could do with more of that.

I don't see any evidence the OP expected her friends to be mind readers? She does say - in the second sentence, so not exactly hard to notice! - that she had told them about this scan. All she seems to have hoped for was a simple, routine, 'how was that scan, Rows?' I really don't see how that's much to ask.

@SarahAndQuack you did explain twice but both times interpreted the words in a way which was not in line with their meaning. Again, not a big deal.

Hopefully OP can speak openly to her friends so that bad feeling can be addressed head on. Many people have their own crosses to bear at any given point so aren't always in tune with how much someone else may be offended or upset by something potentially non-obvious.

I don't think, respectfully, that you are entitled to decide that your sense of what something ought to mean is more important than anyone else's. You seem very determined to read something into the OP's post that isn't there - I don't know where you're getting the idea she wants something complex or non-obvious; it's nowhere in her post. Maybe we should leave it at that?

@SarahAndQuack I did not write that OP requires something complex only that it may not be obvious to others what PCOS means or why there is significant pain after a few months of TTC. But yep, can leave there. Have a good evening.

Thank you @SarahAndQuack - I wish I had a friend like you x

This is exactly it.

My friend’s response was “Well x has PCOS and she has been able to have a child and has another one the way.”

Bybthe way I’ve been having hormonal issues for the last 5 years, and I lost a parent within this time so the TTC journey hasn’t been an easy one for me and filled with trauma. I’m glad that @sirensong you have pointed out reasons to be hopeful though, and I will hold on to the hope that I can solve my insulin resistance and be able to conceive. Hope is all I have left.

I do agree with @SarahAndQuack tgat more sensitivity needs to be given to everyone on the ttc journey no matter what stage they’re at. Even early on. It’s a frightening and daunting road for many. It isn’t easy or straightforward as it is for the lucky ones.

@RowsOfFlowers I'm sorry you're dealing with so much and the added context of course explains why there is heightened anxiety.

I don't know what stage you're at with looking into PCOS but it's an umbrella term for a range of symptoms/ issues which affect women differently. GPs can be pretty useless so it may be worth going straight to a private appointment if affordable (probably around £200). They will be able to consider a metformin or ovulation induction prescription. Do you know if you ovulate each month?

Though your GP should be able to help with full blood tests if you hassle them - every kind of androgen, cholesterol and for insulin resistance. If you haven't already had these done.

I have been tracking my periods for the last few months. They range from 30-35 days but my last was 47 days. I use clear blue ovulation sticks and I do get a smiley face on them and we try but nothing. Scan last Monday said I have cysts. My period this month has caused flooding. I’ve booked a private endocrinology appt for 27th and I’m gonna ask for metformin. Last time I spoke to him he said wait 3-6 months if fine on scan, but obvs wasn’t good so booked back in. I’m 35 so fear time is running out for me.

@RowsOfFlowers to reassure you, there is not a fertility cliff at 35 at all. I understand the ticktock stress but you have time.

Ovulation tests can be inaccurate with PCOS because of high baseline LH. Oestrogen dominance can also cause heavy periods. These can also be caused by things like fibroids, which are in turn often caused by hormone imbalance. Did they scan your uterus at the same time as your ovaries?

Avoiding sugar and simple carbs will help to control your insulin and androgen spikes and may help to regularise your cycle. Slight BMI reduction can also sometimes help.

Cysts btw just means you have lots of egg follicles if that makes it sound less horrible! Women with PCOS have big egg reserves but lots of small follicles each month can mean one large follicle doesn't become dominant and then ovulate. But many women with PCOS do still ovulate and if you do then you're in the game.

Thank you for the info @sirensong

I also have Hashimotos which is an autoimmune condition. I do try and exercise but I can’t seem to shift weight. I’m on an anti inflammatory diet now and I avoid sugar, caffeine and I don’t drink alcohol. I’ve never been a big drinker anyway. I take iron supps, vitamin D and just ordered inoIsitol. feel at a loss as to what else I can do and I’m trying not to get consumed by it all.

Yes, they did a pelvic ultrasound but they couldn’t see anything (that’s what the lady said). I have to say that the lady conducting the scans wasn’t very helpful and didn’t explain things (!) I’m hoping the endocrinologist can give me more info. It’s all a minefield.

lots of egg follicles does sound much better! Cysts brings horrible imagery and connotations. PCOS still worries me. How do you know you necessarily have big egg reserves? What if you don’t?

Appreciate 35 doesn’t mean fertility cliff, but it’s not young either. I may only be able to have the one now (if I can, fingers crossed). I’d be happy with just that.

It’s hard navigating all this while also working full time. I’m shattered. I’m going to try and take up swimming and Pilates to manage stress.

Honestly… brace yourself I have PCOS, had multiple baby losses after years of issues with conception and friends including our closest were absolutely shocking. I’ve got numb to it now but I’ve fallen out with some of my closest. I’m now trying for baby number 2 and people are still shit. My counsellor told me just to be really open with people about what I am and am not able for, to a degree it works but I think what I didn’t expect was how much people would still ignore those boundaries. The hardest part of infertility in any capacity is how lonely it is. The fear etc is isolating. And people either relate or they don’t. Some people have great emotional intelligence and empathy but what I’ve really learned is most don’t.

there’s not much I’d do differently in how I coped other then I’d be more selfish and just hide a bit more from what i wasn’t able for. But I’d also forgive more. I am much more forgiving this time round but I also avoid people I am just not able for: a friend is expecting her second and she’s the last person I want to be around as she’s thoughtless on a good day, so we’ve drifted apart. Another friend announced her pregnancy news at another best friend’s engagement celebrations the week I had a fertility appointment despite her knowing we were struggling again… People only care about their own lives and everyone has shit going on. So forgive yourself for feeling angry and sad, know it’s justified and just a) try and accept people can be largely useful b) people don’t always mean to hurt you and often have no idea they have c) some people are great and you’ll adore them for years to come

Thinking of you, and wishing you all the best on your journey.

ps against many odds I’m currently here in Menorca on holiday waiting for a very hyper almost three year old to go to sleep, things do work out xxx

@RowsOfFlowers high ovarian reserve is a defining feature of PCOS - menopause usually starts later than average. What they referred to as cysts are the follicles that would be noted down to give you your antral follicle count. Every month these numbers fluctuate slightly but it's all of these follicles that would be stimulated with FSH in an IVF cycle, when the idea is to collect all of the follicles (eggs) recruited by the ovary in a given month rather than just one being ovulated in a natural cycle.

If you have your AMH hormone level measured it will be very high. AMH and AFC are the two main measures of someone's reserve. Women with dimished ovarian reserve (low numbers of follicles) try to mimic some of the PCOS abundance by increasing their testosterone levels (taking DHEA).

Im sorry if my comment was a bit insensitive that was not my intention, I was in short saying that your still in the normal range of not having conceived yet and for most healthy couples this still takes 12 months so right now there isnt anything to feel worried about or to say that pcos is the issue, thats what i meant when i said the early stages of ttc. There are still many tests and things you can do. Unless your friends know the ins and outs of what you are doing and you talk to them openly about what you are doing and the worry you have then how are they suppose to know to ask you questions. I get scans and all sorts of testing all the time and my friends dont ask how they go because I dont tell them that they are serious or im worried about them, they also get testing done for things that i dont know about so i dont know to ask. Unless someone actually says this is what im doing and im worried and this is communicated then people dont think anything of it as they have their own stuff going on and go about thir day. I dont think your friends are being insensitive I think there has just been a miss communications with the entire thing and I think if you sit down and talk to your friends they will be very apologetic and remember to ask next time. Again sorry the last comment came across insentive.

Hello. I don’t think you are being insensitive; as a friend, I would expect them to check in. Perhaps they don’t understand the implications of PCOS so you could explain that. I think if they don’t become more supportive/empathetic then it could be worth distancing yourself for your own mental health. All the best with your journey x

Thank you @YourTipsyDog Thats how I feel as well. I’ve decided to distance myself from the friend who just dropped the baby scan on me. The problem is she’s compared me to a friend of hers who has PCOS and has a child and the second on the way. Yes it’s possible to still conceive with PCOS, but when you haven’t and you’re navigating it all for the first time, it’s actually very scary and real. Also everyone’s PCOS is different. I can’t speak for her, but my symptoms have been horrendous and worsened over the last few months. I think she was insensitive and uncaring. I was obviously one of the last people she told as well, and I think it was because I was in a group chat with one of our other friends that she decided to tell me, so she could then start talking about it openly in the group. Well, I’ve decided to leave that group chat now, and I’ve told her I’m taking a step back from the friendship.