Help!

Hi all, my 22 year old girl was diagnosed with PCOS 5 years ago. Treatment by medical professionals dismissive & disheartening to date. Symptoms inc: Extra hair growth, swelling of her tummy to the point she is in severe pain & is asked if pregnant constantly, massive weight gain, acne all over body, huge boil like masses which puss/smell & scar badly between breasts/groin area, neck, thighs...

She is severely depressed, embarrassed and emotional. Self help has included joining a slimming club and being defeated week after week after staying on plan. Exercising every day yet no 'physical' improvements visible.

Medical treatment/Medication has included: Metformin, several antibiotics, birth control injections, 1 scan, 5 discussions around 'life style changes!!'

Any advice/pointing in the right direction/other personal similar experiences would be so very appreciated...Thank you to anyone reading this post. Love one very anxious & worried Mum x

9 Replies

oldestnewest
  • Was she investigated for endometriosis as well as pain is generally more associated with endo rather than pcos - it is quite common to have both conditions.

    Has she tried the combined contraceptive pill as it can help in all those areas that she is having problems in and can mask them. Ive been on it for almost 30 years.

    Dietwise - mmm most dietitians do not understand pcos enough to know what is right, generally low GI is the way to go but you need to know that if she ate the RDA she would still put on 2lb a month so we do need to eat considerably less just to maintain our weight. Cut out all white carbs as they are the route of all evil in my opinion when it comes to pcos.

    What weight clubs has she joined, I know lots of ladies really like slimming world (I havent tried it).

    Bet it is heartbreaking for you as her mum, I would hate to be a youngster nowadays as it is so imagey .

    xx

  • Awww thank you so much for the reply!

    She has never been investigated for endometriosis and no medical professional has even mentioned it but after years of trying to get answers this is no surprise! Carbs is a major issue for us and we both follow slimming world with the least amount as possible; very high fibre, protein etc...

    As a Mum, I feel helpless, upset and challenged on a daily basis so to be in my daughters shoes makes me feel angry, annoyed and devastated...

    She tried the combined contraceptive pill within the first year of diagnosis with no results and has been given an implant ever since. I didn't realise the extent of her struggles until she showed me pictures of the lesions/boil like masses and the resulting scarring...again medical professionals have dismissed as 'just acne!'

    My girl just needs the care/advice and treatment she deserves - every day is a struggle and heartbreaking. No woman deserves such a life.

    Many thanks for taking the time to reply, much love and happiness xxx

  • Have you been referred to an endocrinologist as she needs to see one (not a gynaecologist) as it's a hormonal imbalance and not a 'fanny' problem as the cysts on the ovaries are a symptom and not the cause.

    Which combined pill did she go on? If she takes 3 months on the trot it reduces the pcos symptoms further too so it may be worth re-trying it (Yasmin is a good one). Should of said also the implant is a huge no no from a pcos point of view and can make the symptoms worse

    Also look at the NICE guidelines as it advises what to expect from the NHS with regard to pcos

  • Unfortunatly the heartbreaking story you have said is all to common. Doctors unfortunatly cannot really do very much for the condition they can find out but only treatment is contraception and acids to ease heavy bleeding i myself have been told when crying to my gp that it is just my condition and all can do is pain killers, contraception and acids. Its a vicious cycle pcos makes it difficult to lose weight but is meant to improve if you lose weight have struggled myself for years seems to be the go to fix according to docs but is an uphill struggle can i ask which diet she is trying as ive found it hard myself but started slimming world last year and found it really helped with all the support i got. Im surprised the doctor has not refered her to a dermatologist for sores and acne. Unfortunatly the hormones swings and symptoms can be very depressing but with understanding and supportive people in her life will help and hopefully knowing she is not alone in her symptoms as there are alot of women strugling with pcos and shunned as over reacters but when your curled up in a ball in pain because it feels your body hates you cant be blamed for feeling low and must be heartbreaking seeing your daughter in pain. I hope that the combination the doc has given her does some good but it really is trial and error with the meds and some take time to fix anything wish there was a magic cure love a pcos suffer and mother x

  • Thank you for the kind words and info, a dermatology referral is in the pipeline - has taken 5 years mind!

  • I was one of the first to go on metformin in the UK for pcos.

    How muchis your daughter taking? I

  • Metformin doesn't work overnight for help with weight loss to relieve pcos symptoms. Although my periods resumed immediately thou.

    Metformin taken everyday for months will give your daughter a start to beable to begin weight loss.e

  • I'm wondering if your daughter is getting carb cravings which nil unvoid any metformin she's taking. If so she will benefit from no pasta, bread, rice or potato until things settle down.

  • We didn't know this either, huge thanks xx

You may also like...