Help/advice?! - Just diagnosed but different sypmtoms

A place for older ladies to discuss the issues affecting them and share hints and tips relating to PCOS in later life

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Help/advice?! - Just diagnosed but different sypmtoms

Postby sarahoswald » Fri Jul 27, 2012 7:39 pm

Hello everyone,
I am so very glad this site exists and I'd be very grateful for any help or advice anyone can offer.
I am 44 and have just been told by my GP that I have PCOS. I am fairly devastated and not at all sure what to do, especially since my symptoms don't seem to be the same as most people's here.
The diagnosis was based on blood tests. I had an ultrasound scan but apparently this was all 'normal'. I suffer from chronically heavy, debilitating periods on cycles that run anywhere from 3 - 4 weeks, with bleeding lasting from 5 days to 2 weeks. Often I will have a heavy period for 5 days then continue to lose rather unpleasant brownish blood for a week or more. I have no real problem with excess hair that I've noticed and I don't have acne, although for some years now I have had problems with rash-like spots around my neck and chest.
This has been going on for a few years, along with extreme fatigue, bouts of depression and weight gain around my middle - despite having a very healthy vegetarian diet and exercising moderately as often as the fatigue will allow - plus developing sensitivity to alcohol, dairy, gluten and most prescription drugs. For the past couple of years I have been constantly catching colds, flu, infections, stomach bugs - anything that's out there! I have had 4 bouts of flu since last September and have developed hyperacusis as a result. I take echinacea, vitamin D, vitamin C, quit caffiene, don't drink or smoke, etc. No change!
My GP says this is all concurrent with PCOS. But I am wondering whether there are any other PCOS sufferers out there to whom these symptoms sound familiar??
Anyway my GP has recommended that I have a progesterone-based contraceptive injection. However when I was on the combined pill in my 20s it led to depression and weight gain, so I'm really uncertain about what to do. I've also read that this is not recommended for PCOS sufferers with insulin resistance, which I must admit was what I thought my problem might be. Both of my parents have type 2 diabetes and I am about 2 1/2 stone overweight so should I not be tested for this first?
I would really, really appreciate any thoughts or experiences others have had that might help me to understand things better!
Thank you all,
Sarah
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Re: Help/advice?! - Just diagnosed but different sypmtoms

Postby beaglelady » Fri Jul 27, 2012 8:25 pm

Hi the first thing that springs to my mind is could you be perimenopausal. I am in early surgical menopause so dont have periods but my sister who is your age is experiencing similar symptoms to you. I would suggest asking your gp to do a full hormone blood profile.
had the lot pcos endometriosis, adenomyosis and fibroids. now in early surgical menopause.
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Re: Help/advice?! - Just diagnosed but different sypmtoms

Postby sarahoswald » Sat Jul 28, 2012 1:27 pm

Hi,
thanks beaglelady, much appreciated, I will definitely speak to him about that. I have had periods like this since late 30s though so would have thought some progression/change by now? - though admit don't really know what to expect so it would be good to find out more! thank you & wishing you good health! :-)
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Re: Help/advice?! - Just diagnosed but different sypmtoms

Postby JennyC » Sat Nov 17, 2012 8:26 am

Hello,

At the age of 25 I too suffered from chronically heavy, debilitating periods every 4 weeks. I would have a heavy period for 5 days then continue to lose brownish blood for 2 weeks. I had terrible PMT, during which I could only sleep for 2 hours some reason. I had horrible acne.

Like you I had extreme fatigue and had to take time off work until I was diagnosed and treated. I felt miserable and weepy most of the time, had headaches and felt dizzy.

At the time I was slim. I found taking the Pill (Brevinor) together with cyproterone acetate (50mg/day for first 10 days of the cycle) sorted me out and I could live a normal life again. I've been on that medication until now (53).

Unlike you I didn't get food allergies and drug allergies. However I have heard of other people around your age that do. This normally comes up at eg weddings and don't know the people well enough to ask if they have PCOS. Will keep my ear to the ground.

With PCOS we are all at increased risk of type 2 diabetes so I'm not surprised to hear of your family history.

I hope this helps you feel that you are not alone with your symptoms. Women with PCOS are often described in text books as having very few periods and having unwanted body hair, so those of us with periods that are regular and never seem to stop often feel a little left out of the medical literature. However it's important to sort out those periods. So much heavy bleeding puts us at risk of endometrial cancer so that needs preventing. I have had PCOS for nearly 30 years and because I was treated I don't have endometrial cancer so it's nothing to get in a spin about!

I think an interesting question is why we don't get the symptoms of PCOS when we hit puberty. It took 10 years after puberty for me to develop it and you probably around 30 years. I've never heard any discussion about this.

Anyway keep your head held high, you will get through this, it's a question of finding the right treatment option for you.
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Re: Help/advice?! - Just diagnosed but different sypmtoms

Postby sarahoswald » Thu Sep 05, 2013 10:57 pm

Thank you both so much for your advice and support here, it came at a time when I really needed it. Unfortunately my condition has continued to deteriorate and a few weeks ago I forced my GP to refer me to a gynacologist, after a year of being on Depro-prova injections - these stopped my periods but I've put on a huge amount of weight and have had some other nasty side effects. It turns out I don't have PCOS after all, I never did, and I'm not perimenopausal either - it looks like I probably have fibromyalgia.
A caution to everyone: unless your symptoms, blood tests and scan all add point to PCOS with little doubt, ask to see a specialist before accepting a diagnosis and any kind of medication.
Sending everyone here best wishes for health and happiness,
Sarah
x
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Re: Help/advice?! - Just diagnosed but different sypmtoms

Postby Hols969 » Fri Sep 06, 2013 2:27 pm

I thought you had previous blood tests that confirmed PCOS? The cysts are only a symptom and not everyone has them, and not everyone has symptoms either, quite a few ladies find out when they are trying for a family and not before then. What is their reasoning as to why you now dont have it out of interest (blood test results can vary as to when they are taken too). To be honest I dont have much faith in a lot of gynae's as PCOS is not their area!!
Unless stated, my views do not represent the official views, position or standing of Verity
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Re: Help/advice?! - Just diagnosed but different sypmtoms

Postby Calesmill » Sat May 10, 2014 10:13 pm

I was diagnosed back n 1989 and have lived with awful periods all my adult life. i have my second mirena coil now, which lessens my periods to vitually no blood loss, i still get horrendous pain for which I take pain killers but not having blood loss is a bonus.
I also follow a strict gluten free diet which helps with things like coughs and colds, I was always on antibiotics before. also I am getting back to the gym, it reaaly does help once I am in a routine .

hope that helps
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