Teen daughter, no periods, GP blaming weight?

[mumofteenss]

My 16 year old DD has had 5 periods since she started her periods 4.5 years ago. When she got her first period she was of normal weight and height. She gained some weight in the first few years of high school when she quit sports clubs she had done when younger, She was considered overweight a year after her first period and not having a second. Now her weight is at the upper end of normal and has been for around another year, but it has been 18 months since her last period. Her BMI, though not always an accurate determine healthy weight i know, is 24.2, she looks in proportion and doesnt appear overweight. I have taken her to the GP numerous times, she has had blood tests, and an ultrasound for PCOS, these came back normal, bar testosterone which was high. GP is refusing any further investigation, and blaming her weight. She has basically said my daughter needs to lose weight and her periods will "kick in".

AIBU to think there has to be a medical reason as to how a teenage girl can only have had 5 periods in 4.5 years and want her to have some answers regarding future fertility etc now?

When she started her periods she started a tracker, so we can see he had a period June 2020, Aug & Sept 2021, Feb & March 2022, March 2023. She has no spotting between. She also suffers quite badly with acne. Any suggestions would also be appreciated. We have seen the GP atleast 10+ times regarding this issue over the years.

She is aware i am posting here for advice and was happy for me to share this information.

@LittleMousewithcloggson Thanks for letting me know that PCOS doesn't automatically cause diabetes if you get overweight. It was my gyno, who specializes in PCOS who told me. Nice to know that he was just being a bit dramatic. (or an a..hole)

Quick update. Following speaking to the practice manager, i have now spoken with another GP who has referred her to endocrinology. Lord knows how long we will be waiting, but atleast she has the referral.

Thank you for all the advice

Excellent update, OP. And well done to you both. At least you've started 'the journey to diagnosis and treatment' whilst she's still very young

Complain about this gp and ask for a gynaecologist referral from another gp

Sounds like she meets the diasnotic criteria for PCOS.

https://cks.nice.org.uk/topics/polycystic-ovary-syndrome/diagnosis/diagnosis/

she has 2 (no periods and acne) the weight gains likely related.

GP's are useless at pcos. Get a referral to an endocrinologist. Endos/gynos arent the best at PCOS, some better than others. Its one of those things very few actually have indepth up tp date knowledge of, So be prepared to look at own management.

Myo-innistol changed my life with PCOS.

High testosterone is a definite marker of PCOS. You have have pcos even without the classic appearance of ovaries on ultrasound. In fact most PCOS does not present classically.

High testosterone and absent periods is really sounding like pcos. Reducing weight should help. Other basic treatments include the combined contraceptive pill and metformin. PCOS is actually closely related to type 2 diabetes.. is there any of this in your family? A low carb diet can help. But I understand in a girl of her age this is difficult.

Also to add that all those postets commenting on the OP's daughter's BMI it has been known for decades, if not scores of years, that the BMI was never intended by the person who devised it to be used in the way it has been. This can lead to diagnostic overshadowing, as in this case, and dangerous advice for anyone with an eating disorder, or at risk of developing one. Luckily the OP herself knows this but for those who don't you may be interested to read this article and its references

www.medicalnewstoday.com/articles/265215#BMI-exaggerates-thinness-in-short-people-and-fatness-in-tall-people

@IamnotwhouthinkIam @Antsinmypantsneedtodance Could myo-inositol help with a more average cycle length? My poor dd has a really short cycle, only 21/22 days, so only 2 weeks free of bleeding before her next period arrives. She's taken norethisterone a few times to delay her period for things like going on holiday and on a school trip, but I don't think it's usually prescribed for regular use?

Sorry @Ivyy , I’ve got no idea about whether it can make a cycle length longer - only help to make cycles more regular (I went from anytime between 25 to 31 days to almost bang on 27/28 days most months).

Might be still worth a shot to try it if she can afford it for a few months though, as like I said, it’s basically a food supplement so really unlikely to do any harm/ have any negative side effects.

Metformin does do the same thing but the upset stomach’s/ having to rush to the loo is nasty and really commonplace 😢 - it was worth it to kick start my cycles in the first place though, as I hadn’t had a period for over a year at one point!

Did she have the Gardasil vaccine?

I’d see another GP. I’ve had so many issues getting answers for my DD, she had a blood transfusion after her first period wouldn’t stop and was very heavy, and she’s not been well since, constant things flagging in her bloods and low energy / dizzyness. Its been like pulling teeth trying to get answers, and that’s from several GP’s

Absolutely insist on a gyne referral.
i was the same in terms of periods. A consultant (back the 1990s) told me to put up or look at a hysterectomy (I was 15!)
I was later diagnosed with PCOS & endo,
mum 44 now with 2 IVF babies, after my eldest my periods were pretty regular,after my youngest was born, I was 42 my periods are now regular as clock work.
i didn’t have weight issues but absolutely, unwanted hair growth and the general pain and not quite right feeling was horrid. You sound like a lovely supportive mum, gyne services are (at consult level) are incredible. We have advanced so far with this medicine and options..,
thankfully I didn’t listen to the antiquated consultant all those years ago!

we shouldn’t have to, but as your daughter has her lab results perhaps a 1 off private appointment maybe able to review and give you correct nhs referrals?
good luck

I think an endocrinologist or gyno is something to consider, if these concerns continue nip it in the bud now to help reduce the worry for you and her. Also watch the acne if it starts resulting in scars that can also affect a young girl. Some GPs are reluctant to look at Isotretoins because of early research that was over played. So dermatologists can assess. take care Good luck

she has had [tests].., these came back normal, bar testosterone which was high.

What were the testosterone numbers, OP?

You may find it useful to look via this link for pcos specialist doctors. Many NHS hospitals run specialist reproductive endocrinology clinics and you can ask to be re-referred to one that may suit you in terms of expertise and waiting list to be seen. Endocrinology is a huge specialty which includes diabetes care (although many run separate diabetes clinics) but endocrinolgists with good knowledge and experience of diagnosing and treating PCOS liaise with gynae and dermatology colleagues anyway...
in large NHS hospitals at least. This is why seeking a private consultation may not necessarily be the best option.
https://www.topdoctors.co.uk/doctor/polycystic-ovaries/

That is absolutely awful of your GP....enough to make a girl anorexic. To put your mind at rest, I was overweight throughout childhood. My periods started at 11 years old, I am now 51 and they have been regular every month. It is not her weight!

Sorry for resurrecting this old thread, but my daughters endocrinology referral has come through and we have the appointment this afternoon. Very impressed with the 2 month wait!

Can anyone give me any advice on what we should be asking, or expecting at the appointment? My daughter is a little bit apprehensive. Thank you

Fantastic.

She's a bit older and her challenges are different to my DD who was experiencing symptoms of early puberty but her first appointment involved:

• a chat about symptoms and medical history
• a light examination. In DD's case, this included breasts and external review of the labia/vagina. I would imagine in your DD's case, that may or may not happen - breast exam probable, but labia/vagina I'd suggest not necessarily. I would not be surprised however if the specialist wants her to have an internal ultrasound at some point although I note that 35 odd years ago the external ultrasound was plenty ot identify PCOS on me at a similar age
• Discussion of possible issues and what tests would be forthcoming - in our case a regular ultrasound, blood tests, and a bone density test.

If your paediatric endocronologisst is as lovely as as ours, he/she will be extremely respectful and understanding of any discomfort your DD will be feeling and will do everything they can to make her feel more comfortable.

Good luck!!!

I imagine the appointment will be asking questions about why you're there and medical history. It might be useful to write things down before you go.

One thing that surprises me is the lack of uterine ultrasounds either internal or external.

I hope you get some answers - and encouraging ones.

Other things to consider are being intersex or early menopause. 😥

I commented back in September, and since then DD16, had more blood tests after I mentioned PCOS to the Paeds Consultant and he also referred her for an ultrasound.

Her testestorone levels are high and other levels were high/low, can't remember which ones off the top of my head.

The ultrasound results said "this indicates that she has PCOS". so we are now waiting to see the Gynaecological Consultant.

At a point in the appointment i say -

DC, I’ll just step out so you and Dr can speak without me here.

Just want to sure DC has chance to say things might not say with me in the room.

Years back when I had my first PCOS endocrinologist appointment, they just measured height and weight, checked over any previous blood test results and talked through the main obvious PCOS markers with me and asked me if I had them - hair loss (on head), more than average hair growth (on body), more acne than common for age, irregular periods, weight gain not caused by poor diet, and hormonal blood test markers.

Sometimes if you tick enough of the boxes they will diagnose PCOS even if some of the others (including hormonal markers) are not present. I very much doubt they will do any intimate examinations on the first appointment- but they may order repeat bloods (possibly to be done then and there at the hospital) and may or may not try to schedule a trans vaginal scan for a later date to look for cysts (doubt they will do it then and there though). Hth.

Obviously it’s worth asking about any medication that they think might help, if the docs don’t mention it themselves. I was put on spironolactone and Metformin but I was older than your DD (early 20’s).

So we had the appointment. The Dr said she meets the diagnostic criteria for PCOS, however he ordered some more bloods (testosterone, oestradiol, LH, FSH, prolactin, thyroid, hba1c, 17 hydroxyprogesterone) to confirm and check for other conditions, and we have a follow upin 2-3 months. In the mean time he wants us to go back to the GP and start her on the pill.

He also weighed her and did her BMI using the adult scale, which is now 22.7, perfectly healthy weight for her height.

Thank you all again for the advice.

That sounds to have been a very constructive appointment, OP. I hope your DD felt it went well. In my experience, PCOS patients are usually managed by the endocrinology team, not gynaecology until they may want to start ttc. As her mum. you may find it helpful to join a fb pcos support group. Additionally, if there is an endocrinology or even PCOS specialist nurse attached to the hospital team she's under the care of they can be a very helpful point of contact for any queries you may have. You may want to google 'specialist endocrinology nurses in xxxx trust', often names and contact details are in the public domain, including their area of specialist interest/expertise.