Mum in need of guidence.

General discussion area. Just been diagnosed? Need to share your story and get some peer support?

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Mum in need of guidence.

Postby fxllenstar » Fri May 16, 2014 6:46 pm

Hi my name is Sue and my 15 year old daughter Chloe has just been diagnosed with PCOS. To say I was devastated is an under statement. I battled with the medical profession after Chloe was born as I was diagnosed with endometriosis I had suffered since my periods began and was just told painful heavy periods try this pill try that pill. I ended up having a hysterectomy at 32 as my insides were too far gone to be saved. When Chloe presented with her symptoms we were straight to the Dr's as my husband and I vowed Chloe would not go through what I did. Does any one know if these two conditions( PCOS and endometriosis) are linked in any way? Each time we go to the Dr's I ask the questions but never seem to get any satisfactory answer as I feel they are out of there depth. How do you come to terms with the condition and move on? Chloe is so young and with out life skills is struggling to come to terms with it. I have to say we have found Verity extremely helpful far better than the Dr's. Apart from the obvious if any one has any ideas on how I can ease the burden for Chloe I would be grateful of anyone's input. As a mum if I could take the pain away I would but I can't. I feel helpless.
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Re: Mum in need of guidence.

Postby Hols969 » Fri May 16, 2014 7:32 pm

No there is no link between the two, we do have some ladies that have both. Thing is that pain is not a symptom of pcos but is for endo but GP's seem to dismiss the pain aspect and link it to pcos which is not the case. The one good thing is that you have had it so you know what the symptoms can be like etc so may be able to tell if it is more down the endo route than pcos route. It would be worth your daughter seeing an endocrinologist as they specialise in both pcos and endo so you can kill two birds with one stone!! What are her periods like, are they painful at all or just irregular and pcos symptoms?

I know the worst thing for me when I was a teen was the body hair, so started waxing age 15 but I think the pressure is on for teenagers now as everything 'seems' so perfect (even if it is airbrushed within an inch of its life) and it is difficult to see 'real' women (and actually as a mum you will know that people often don't see what your daughter will see when she looks at herself). The pill will help control the symptoms but can take 3 months to settle, there are lots of different types though, yasmin and dianette is good for facial hair and general pcos symptoms. There is a cream you can get from your GP (which they wont mention as it is expensive), called vaniqa and this slows down the growth, doesn't get rid of it). The one thing that worked for me was laser, expensive but it gets rid of it. Unfortunately because it is an underlying hormonal imbalance, nothing is permanent for us except electrolysis but that is slow going, but if she is dark haired and pale (ish) skin then laser is good to get rid of the bulk of it).

Moods can be an issue as well but the pill can help control these to a degree as well. You find loads of info on here, what ladies have tried and worked, or not worked and you will get far more info from the sufferers than you would from a GP!!
Unless stated, my views do not represent the official views, position or standing of Verity
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Re: Mum in need of guidence.

Postby beaglelady » Sat May 17, 2014 9:00 am

hi I've emailed you there is a link and also an endcrinologist is not the route you should go. i have experience with both and have seen top specialists in this field so happy to help you.
had the lot pcos endometriosis, adenomyosis and fibroids. now in early surgical menopause.
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Re: Mum in need of guidence.

Postby fxllenstar » Sun May 18, 2014 7:23 pm

Hi and thank you to Hols969 and Beaglelady you have been most helpful. We are back to the Dr's on Friday I will be able to use all your information. Trouble is I have expressed my fears regarding enod and was fobbed off with the pill will help that too if she has it, I know from bitter experience that this is not the case. All they say is she's too young for surgery to find out if endo is present!!! So far I have kept calm but ladies I could explode. This is my baby and I don't want her to suffer. Chloe does get a lot of pelvic pain which is why I am so worried but now that PCOS is on the table the Dr's seem to have drawn a line under it. Any further advice most welcome. Mum in need of guidance.
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Re: Mum in need of guidence.

Postby beaglelady » Sun May 18, 2014 8:15 pm

my specialist has operated on girls as young as 13. the earlier the diagnosis the better then you can get the right treatment.
had the lot pcos endometriosis, adenomyosis and fibroids. now in early surgical menopause.
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Re: Mum in need of guidence.

Postby daisy » Tue May 20, 2014 11:39 am

Hi
I completely understand how you feel. My daughter has recently been diagnosed too and I am also struggling to come to terms with it. What is helping me is the fact that I refuse to let her life be defined by this wretched condition. Although doctors seem largely disinterested, there seems to be loads and loads of things that can be done to self help. The number one things being to cut out sugar as much as possible/exercise frequently and vigorously and keep the weight down. These will need to be lifestyle choices for our girls for the rest of their lives - but none of those choices are necessarily a bad thing. If they can control their weight then symptoms should be minimised the best that they are able to be. Also, symptoms vary hugely for each sufferer, both in terms of severity and what actually does effect them. it is going to be a case of wait and see and then be pro active. There is no guarantee that anyone will get the full range of symptoms or how badly they will be effected. It is a horrible thought that our girl s will have this throughout their lives, and there is no doubt it will make life that bit harder for them, but I keep reminding myself it is very common and there is much they can do to help themselves.Good luck and stay in touch x
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Re: Mum in need of guidence.

Postby fxllenstar » Tue May 20, 2014 6:15 pm

Hi Daisy thank you so much for your words of encouragement. Your right when you say the DR's are not interested. It makes my blood boil. We have made changes to Chloe's diet and we will embark on our exercise routine at the weekend. Now we have worked out what we are going to do. I will be with her every step of the way. Mother nature can be so cruel and this is one of those times!!! The hardest part is acceptance of the condition Chloe is not there yet sadly and we are having a lot of low's very tearful and very angry. May be your daughter would like to talk to Chloe she is known as fxllenstar and is on the teens site. Once again thank you x
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