PCOS+Endometriosis

[FantasyAndHope]

Gp is investigating dd (18) for PCOS/endo
She's currently on the combination pill. Was on rivegdon now swapped to lucette. She's still having painful periods and bad pms. This is her 5th month on the pill.
Just wondering how people are treated with both?
She's very hairy

Dd spoke to gp this week and she said await for the test results to come back and go from there but in the mean time stay on the combination pill and grin and bear the pain until they have the results back.
Dd "withdrawal bleed" has come today and she's in agony and is having hot sweats. She's back to school today but is home Wednesday as she has a hospital appointment regarding the abscess on her eyelid. Dd is going to ring up Wednesday and see if bloods are back.
I'm unsure if they'll refer to gynaecology given the opthramolgist wanted dd to have a referral to dermatology about her recurrent abscesses and the doctor said no and put her on oxytetracycline, so a referral to a gynaecologist seems unlikely.

See a different Dr, or absolutely insist on the referral. Go private if you are able to. Refer to NICE guidance as your back up. This is your daughters day to day life and its having a significant impact on her quality of life. With absolute respect to her GP they are a generalist and a good gp will recognise their limitations and refer when required.

SIB
Unable to go private. There are only 2 female doctors that are regular there. It is also hard to even get a gp appointment. I will check out nice guidelines, and tell dd to read them so she can do it etc...

What is it I should specifically look for on the nice guidelines?

I would look into changing GP practice in the longer term also.

re this comment:-
"I'm unsure if they'll refer to gynaecology given the opthramolgist wanted dd to have a referral to dermatology about her recurrent abscesses and the doctor said no and put her on oxytetracycline, so a referral to a gynaecologist seems unlikely".

Which doctor said no, was it the GP?. I would still push for a gynae referral regardless; both you and your DD are being fobbed off here bigtime. Recurrent absesses and other skin problems could be linked to PCOS; some women who get referred to dermatologists for such problems do have PCOS.

Also this does not address the whole other issue of why her painful periods are occurring in the first place.

I would insist on a referral to a gynaecologist. In the meantime your DD should keep a daily pain and symptom diary if she does not already as this will give the gynae clues.

At
DD has other health issues which they picked up on quickly and are generally good. I've been with them over 50 years so I'm a little reluctant to change because they are generally good.

R.E the abscesses etc the doctor (gp) wasn't a regular at that surgery and dd went on her own but he was rather rude. So he rang me and apologised apparently he was having a bad day as he was suffering with depression , which is no surprise given the pressure and state of the nhs.
When dd goes back to the doctors, I will tell her to insist on a referral.
It is worrying that she hasn't addressed why her periods are painful and dd was surprised. I will tell her to keep a diary thank you.

It looks like we are in for a long road

cks.nice.org.uk/endometriosis#!scenario

www.guidelines.co.uk/pcos-uk/pcos

It is uncomfortable to have fitted but in my experience as a fitter women with painful periods tolerate it very well as it's gives you a period type pain.
By having a Mirena she can get ahead of the gynaecologist and perhaps get some relief whilst she is waiting. Where I live she would be waiting over a year for routine laparoscopy at which point they would suggest Mirena anyway.
More and more under 20s are having them and tolerating the procedure well. It works by thinning the lining of the womb so that everybody bleeds less and some none at all.
Could she go to a clinic where she is? We are used to fitting them in young women so often manage the situation better. Some gps don't like fitting in young women.

DD is home Wednesday this week so its possible she could go this week. She's also going to try to get another gp appointment this week to see if they can do anything about the period pain.

Would she want you to go with her?. Having you as an advocate when in front of the GP also may be helpful. At the very least you could provide some moral support and ask questions.

I normally would not advocate such measures but I do feel that your DD has been messed about here and what she has been given to date has not worked out for her. There should be a referral in the pipeline now.

I have found that the best treatment for my endometriosis was surgical excision by laser. I was given an appointment a week post op to discuss the findings; that should happen too.

Recurring abscesses, skin issues, bloating, joint pains etc in addition to the Pcos, endo? Has she been tested for coeliac disease?

Andhold
I think I would know if she has coeliac disease she eats a lot of carbs etc and is fine. No sickness or anything and my brother has it and cannot eat bread etc and dd is fine with bread and other carbs.
at
She's adamant she wants to see gp alone but said any hospital appointments I go with her.

Respectfully, and without wishing to cause offence, I'd say that with the additional information that a close relative has been diagnosed, it's even more important to consider this. With all of her symptoms, it sounds like she might not be "fine with it".

Symptoms can vary a lot from person to person so it wouldn't necessarily present it the same way as your brother (if she has it), but a number of the symptoms you describe could be due to undiagnosed Coeliac.

AndHoldTheBun
I've asked dd to look at the symptoms of it and she said she doesn't feel like she has the symptoms besides the tiredness and bloating. And the bloating is worse around her period. And I have looked at her blood tests for her joints etc and she was tested for coeliac disease 3 years ago and it says result negative.

So one blood test has come back and it's not good. They are ringing dd this afternoon
I suspect it's the full blood count that will be back and not the hormone tests am I right?

Update
At
Doctor has rang dd. She said blood tests have come back 'borderline' of PCOS. But not enough to diagnose she mentioned the pill could suppress her hormones but not to worry as she may have cysts on her ovaries and they need symptoms with either blood test or ultrasound result. Dd is slightly annoyed and asked if it would be better to come off the pill and re-test bloods but she said to wait for the ultrasound results.
Dd is feeling disheartened/annoyed because she has many of the symptoms and she is frustrated with her periods

You dont have to have cycstic ovaries on US to be diagnosed with PCOS, its a cluster of symptoms:

2 of the three below are diagnostic

NICHD Diagnostic Criteria for PCOS is:
Clinical Hyperandrogenism (Ferriman-Gallwey Score >8) or Biochemical Hyperandrogenism (Elevated Total/Free Testosterone) AND

Oligomenorrhea (Less Than 6-9 Menses per Year)

or Oligo-Ovulation AND Polycystic Ovaries on Ultrasound (>= 12 Antral Follicles in One Ovary or Ovarian Volume >= 10 cm3)

Get her to google ferriman - galway score and score herself, this was part of my diagnosis.

I'm angry for her!!!! See another GP and advocate for her she needs to see a gyneacologist and/or an endocrinologist.

SIB
She has cried to me because her 'blood tests' are borderline. GP didn't tell her the results just that they were borderline. She is fed-up it is effecting her schoolwork she's constantly tired and cannot concentrate in lessons.
Were in the u.k was a bit confused by your line on US does that mean american system? not sure.
She's just annoyed even more so that the gp wants to keep her on the pill when she's currently on her withdrawal bleed and she's in agony at school.

Dd said if she hadn't suffered for so long and trialled so many things and is now on the pill and still no relief Plus the 'borderline' result she would accept there wasn't an issue and just suffered with bad periods. But as an 18 year old she hates having a hairy face and hairy arms the constant period pain. I feel for her

Take magnesium and vitamin d. Less saturated fat in the run up to periods.
www.sott.net/article/276505-8-Ways-in-which-Magnesium-rescues-hormones
www.ancient-minerals.com/blog-post/pre-menstrual-syndrome-magnesium/
It is not a cure but it can help and it is not expensive.
Wassen has a good magnesium supplement for women, it also has b vits.

Sorry US = ultrasound scan. Im uk too. No such thing as 'bad periods' this is the reason why so many people suffer as they have been lead to believe periods mean pain and suffering, it really doesnt. Go back with her if shell go with you x

SIB
She's extremely stressed with alevels she has internal exams next week to give her predicted grades for ucas. School has said if it goes badly to retest at the end of this term when her health is better however it looks like it won't be solved for 4 weeks time. So she is panicking.
She is fed up and after the tears and stress she has vented she said mum can I tell you something but don't be sad? I said what she said I know you probably think I'm still a virgin although is suspect you have your thoughts it has happened by now( had a boyfriend for 8months) she said pain during sex is painful and to me this was the goal that made me think it is endometriosis or something is wrong.
I asked her if she had told the doctor and she said no because she thought it was embarrassing so I told her they'd probably heard and seen worse.
She is at her wits end in pain. She is more frustrated at the 'borderline' result been classed as 'clear'
puffpaw
She takes vitamin B+
She can't have magnesium,iron or zinc or indigestion tablets with the oxytetracycline.

Bless her, please please please take her back with a list of everything you've written on here and advocate for her. X

Ok so you need the US done before GP can refer her (gynae aren't going to accept a referral without). Then you need to push to get a referral asap. Painful periods and pain during sex is not normal and she needs to have endo excluded. She may have PCOS too but that shouldn't cause pain (but would account for the excess hair). Would you be able to afford a private consultation? Usually costs around £150 but would mean you could see someone good and they'll be able to transfer ongoing care back on to the NHS.

SIB
I think I will. She cannot go on like this
welsh
Unable to afford private due to disagreements with her dad so I've had to start paying more % of school fees.
Her symptoms of PCOS include
Excess hair
Acne-turning into cysts then abscesses
She has up to 3 periods a month off the pill
Then it can go to 1 or none
It is the 'borderline' result that worries me most as to me that is not a clear result