PCOS at 19 - told unlikely to have children

[DaughterTroubles]

My DD was told today they think she has PCOS and, because showing so many signs at such a young age, they said she may not be able to have children.

This has come out of the blue, as although she was having various medical issues, she was seeing a different specialist who only sent her to gynae to check no issues.

She is pretty devastated. We are stunned. Any advice?

[bigglewig]

I have PCOS, had it from such a young age and had didn't have any periods for about ten years. Three months of clomid and ingot pregnant with my son and then had my second child soon after with no treatment. Babies are totally possible. I also have several friends with it, who now have 2 children each, they were all got pregnant trying no longer than a year. Apparently up to 10% of women have it...so keep positive and if she can, forget about it for the time being!

[DaughterTroubles]

Thank you, you are all being a big help.

I'm a bit worried about the careful diet bit as she is a fussy eater (taste and texture sensitivity), her boyfriend is even worse, and her diet has deteriorated since I have had less control over it. But this might be the push she needs.

She's had a lot to contend with in the past year or so, some self inflicted, some not. We could do without this right now.

[coldlocation]

I was diagnosed at 25, spent 5 years on metformin and a careful diet - conceived ds1 easily, then had two miscarriages and had genetic testing, then prescribed clomid and had twin boys. They are now 11, 11 and 13.

[Loopytiles]

“Subfertility due to PCOS is relatively easy to treat with clomid”.

That’s not good advice. Some women with PCOS have biological DC without fertility treatment, some do with treatment, but some sadly cannot.

When a gynae doctor made a sweeping, negative comment at an appointment about my fertility (not PCOS) I worried a lot afterwards, then asked my GP to write to them for clarification, which she did and the specialist looked at his notes/my file, consulted a colleague and I received a more considered and helpful response in writing.

[minipie]

As well as the advice above, I would advise you/her to keep an eye out for any hypothyroid symptoms as it seems often to be connected with PCOS. Also a low GI diet (especially not much sugar, bread and other “white starch” products) is likely to work well for her in terms of weight and hormone control.

A friend has PCOS, diagnosed at a fairly young age, told she’d have fertility problems - she conceived first time, twice... I have PCOS and have two DC, the first took a while but due to thyroid not PCOS.

[OhDiddums]

Plenty of women with pcos do conceive naturally. Your dd may not ovulate every month but chances are she does ovulate some of the time. It may take her longer to conceive but definitely doesn't rule out her doing it without help. Plus she is lucky to have a diagnosis early. At least when she wants children it will already be noted rather than her having to go through a year or more of trying without help from her GP..

[ajandjjmum]

DD (mid 20s) has also just been diagnosed. Her main concern has been weight gain, and the fact that she is exercising daily and dieting, without seeing the change she would like. The GP said she may need a little help when she wants children, but wasn't a big deal.

She saw a consultant who has put her on Metformin, and after the initial few days, she seems to be tolerating it well, so hopefully that might help.

Horrible isn't it, when you can't kiss it better!

[dietcokemegafan]

I had this and was told not to bother with contraceptives for birth control

Actually this is a very good point. In my days doing a family planning clinic I've arranged many many terminations for women who didn't bother with contraception because they had PCOS and 'couldn't get pregnant'. Make sure she isn't one of them @DaughterTroubles

[OohToBeAah]

I too would be very surprised if her doctor told her this. I was diagnosed over 10yrs ago and it wasn't something they told me - they just said I may need some assistance in the event I want children.

However, in the 10yrs since I was diagnosed, my periods have regulated to the point where I have around 10 periods a year, and have done for a few years. She may find that, as she gets older, her body and her symptoms change. As other posters have mentioned, there are ways to keep the symptoms under control.

For what it's worth, a friend of mine has both PCOS and endometriosis, and has 3 lovely boys!

[DaughterTroubles]

I wouldn't be surprised if she has partially misunderstood the message of what she was told. I hope so. I will do my very best to go to follow ups with her if she will let me.

[Amara123]

It's not as cut and dry and that..and i would still be careful to discuss contraception with her because there is always the chance she could fall pregnant in an unplanned way. She may need help or maybe not, but many of us do for a range of reasons.

[MistressDeeCee]

I have PCOS. For DD1 I had to take Clomidene? (Many years ago, so don't know if I've got name right). DC2 was born naturally.

DD1 diagnosed with PCOS at age 22. With medical and treatment advances I'm not worried, and have reassured her as I was in the same position, and have 2 children. So there is always hope.

How can they be so sure that your DD is infertile? I'm very surprised that they've told her that.

[chilledteacher]

I had this and was told not to bother with contraceptives for birth control as I would be unable to get pregnant. 3 babies later...

[Rrxox]

36 weeks (almost 37) pregnant with a surprise baby and pcos and a family history of fertility issues/endo.

They don’t have crystal balls, but some doctors feel they’re better being blunt so you’ll take them seriously. Of course there will be people who struggle to conceive with pcos but there’s help out there for them too.

[arkela]

As well as metformin, etc. there are also dietary ways to control PCOS. Look at the keto diet, for example. (Another one here with PCOS - and three children.)

[mummamaker]

3 of my friends have it , all diagnosed in early twenties and have all gone on to have beautiful babies , one needed extra hormones I think and it took a year or so to conceive but the others were fairly quick to conceive so don't give up hope

[BeTheHokeyMan]

Another one diagnosed young here also have endometriosis and adenomyosis and have three fit and healthy children so there is hope op !

[Kelly199]

Hi @DaughterTroubles I have PCOS. I haven't had any children yet, but I am ttc and have undergone many tests. Am due to start clomid at end of month before ivf.
They have told me I need a little help as they don't think I'm ovulating, but there are things to try.
Every individual with PCOS is different (so I've been told) as some can be more severe with different factors to consider.
I'm not that knowledgeable, but I do know that there are usually options.
Given what others have said above with pregnancies and live births, I guess it shows it's not always the case of not being able. Just need some help along the way x

[youmeandconchitawurst]

I've got pcos. Diagnosed at 16. I've also got two ds both of whom were unaided conceptions.

A few things I've found useful: stay in touch with the endocrine clinic, it means you get access to the most recent treatment and aren't getting reviewed by a gp. Also means you're in the system for fertility treatment if you need it.

Work hard on getting BMI to healthy range and keeping it there (less chance of pcos related pregnancy and childbirth complications if you're not obese).

Consider starting young - or at least not old, in terms of starting a family - that way if it takes time you aren't racing the clock.

It's not a fun diagnosis but it's also not quite the fertility bombshell that she seems to have taken on board.

[NerdyBird]

I have PCOS and have been pregnant twice and have one child. It may be harder for your dd to get pregnant and to get the relevant treatment if she needs it but it's not a given she won't have children.
If she has an irregular or long cycle some tests need to be done at different times. The conception boards here were helpful, and doing my own research as well.

[DaughterTroubles]

Thank you. I didn't think it was as hopeless as she was saying, having read the NHS site, and from info I have picked up over the years. Hopefully you lot are right and she heard an overly pessimistic message.

Unfortunately I wasn't at the appointment as we were expecting it to be a non-event, and she has processing issues so she doesn't think quickly on her feet. I will try my best to get her to let me come to next appointment with her.

[dietcokemegafan]

Honestly? I think it's very likely your daughter has misunderstood. Subfertility due to PCOS is relatively easy to treat with clomid, much easier than unexplained infertility and it would be really unusual to say this to a 19 year old.

Were you at the appt with her? What was the exact phrase used? Is she overweight? If so she needs to work on getting her BMI < 25.

I really really doubt that any reputable gynae has told her this at 19 unless there is a lot more than PCOS going on.

[Squ1ggle]

I'm so sorry for your DD, that must be a lot to take in at her age. However, the positive is that she already has a wonderful example of how children do not necessarily need to be biological as you have shown her an alternative by way of adoption working wonderfully in practice.

[TescoValue]

I got told this exact news at 19, although I had known I have pcos for about a year or so before I got told I couldn't have children. I was sent for ultrasounds but before I had that appointment I found out I was pregnant, was using contraception religiously aswell.
I had my son and carried to full term with no risks at all, and had scans that showed almost all of my cysts had gone! MIL has pcos and fell pregnant month one of trying 3 times, and carried to full term, so did the girl I work with. Not having kids is really outdated because there's loads of help available now like Metformin etc, but I fell without help.

[Loopytiles]

That’s really sad, but it’s uncertain. There is a lot of literature on PCOS she might find useful.