Help with dd & PCOS

[longtompot]

My dd (22) has PCOS and has all the usual side affects, excess hair, weight gain and irregular periods. She usually has about 30-40 days between them but this month it is 72 days and counting. She has some low abdominal pain which is also around her lower back. She feels sick quite often, and thought this was due to meds but maybe it's more to do this the PCOS.
I am trying to get an appointment for her with the gp to discuss things, but it's almost impossible to get one currently. Her concern is if it could be a cyst. She's never been scanned to confirm the condition, and she is a bit worried that she might have to have the internal one but I have read due to her age and not having given birth she would probably only have the external one.
Does anyone have any suggestions of what to look out for in case things get worse with the pain, or any advice in general about PCOS and what she should be asking the gp for.

Have a look at a book called the period repair manual.

Lots of info about PCOS in there and some lifestyle changes that might ease some symptoms. It also has guides about what to ask your doctor for.

Really helpful book.

AFAIK pcos doesn't cause sickness or ongoing back pain. I assume she's not pregnant?

Advice in general is do everything humanly possible to maintain a healthy weight, as symptoms usually much reduce. Easier said than done I know. Take inositol supplements which help break the vicious cycle of insulin/testosterone/weight gain, and therefore help with other symptoms too. Takes up to three months to start working though.

Definitely not pregnant. Thank you for the info and book suggestions, I shall look them up

GP is the first point of contact but not all of them are up to speed when it comes to this particular disorder.

PCOS too is a very individualistic disorder that does affect each woman with it very differently. The commonality though are the cystic follicles on the ovaries. These can disappear only to be replaced by further cystic follicles.

Have a look also at Verity's website re PCOS which is www.verity-pcos.org.uk/.

If I was your daughter's age and knowing what I do now, I would bypass the GP altogether and pay to see a gynae as a private patient for an initial consultation.

Try to understand the pain, ask her if the pain is static or if it moves from place to place. If you can afford it, book an obgyn appointment to check what's going on

First job is to see the GP. In my experience:

• GP ordered bloods to be done at a certain point in the cycle
• Blood showed odd hormone levels so referred to hospital (endocrinology and gynaecology) for scan
• Internal scan (was 28, never had a baby) to check for cysts and rule out things like endometriosis
• endocrinology consultant and i discussed and agreed a plan of action (for me, before i was ready to have kids, it was low carb diet and the pill; once i was TTC, it was low carb + metformin + referral to assisted conception for provera + letrozole).
• monitored by hospital at 6 monthly check ups until stable then discharged back to the GP

I had 10 years only irregular periods (including a year of no periods and three years when i only had 2-4 periods a year) before i found a GP who took me seriously (and she was a locum). Be prepared to push and be prepared that GPs seem to be a bit rubbish about PCOS.

@GuidingSpirit has it spot on in my opinion.

I had trouble getting a diagnosis from my elderly GP up north. Moved to London, new young GP who took one look at my acne ridden back and lady beard and referred me to gynae and endocrinology at Central Middlesex. They in turn also allocated me a nutritionist.

If she’s having issues with periods, weight, skin, body hair, then push for a specialist as soon as you can.
PCOS is more serious than people think - I’ve got a critical illness and life policy which, despite having two parents who died early from cancer, is double the price because of my PCOS. The assessors say that my risk of heart disease, stroke and diabetes is higher than my risk of dying from a possibly inherited cancer.

Endometriosis is not readily if at all detected on internal ultrasound scans if it is present. Endometriosis is usually diagnosed via laparoscopy which is keyhole surgery.

The internal ultrasound scan is done to assess whether ovaries are showing as polycystic. Polycystic ovaries can appear larger than a normal sized ovary (walnut size) and with a ring of pearls appearance to them.

@GuidingSpirit your not wrong about them being rubbish about PCOS. One gp said there wasn't anything she could offer for it, this was about 2 years ago!
Thank you for all the information. I will push to get her seen by a gp, not a phone call and get those tests done. She is already at a higher risk of cancer due to various medications she has been on for arthritis, and I didn't realise this could raise her risks as well :(

Just to say she isn't ttc and won't be ever