Newbie needing support

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

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Newbie needing support

Postby 123treehouse » Fri Jan 02, 2015 6:47 pm

Hi everyone.

I am 33 years old and have PCOS. I was diagnosed when i was 17 but have started to really struggle with my PCOS now. I have been taking metformin and spirolactone for about 7 years. I have just been diagnosed with very high blood pressure after having a 24 hour blood pressure monitor fitted a month ago. I think my blood pressure was at one point over 200/100 not sure how much over this it went. I was started on medication straight away. I had to take the meds as soon as i got them from the chemist. I have been reffered to an endocrinologist who i saw a week ago. He has reorder lots of tests my gp has done plus i have to have a heart scan. They are trying to find out what the cause of my high blood pressure is. If these all come back negative they have told me that i will need another kidney scan but this time a mri scan with dye.

The last few months have seen an increase in my acne and oily skin. I also have noticed my periods have also changed. I am not sure if this is due to an ovarian cyst i have. Apparently when they did my kidney scan they found a cyst which isn't a pcos cyst. It is one that is bleeding inside. So i'm not sure if my lack of periods is due to that or my pcos being much worse. I have to have another scan to check for that as well in three months time.

I haven't been very well lately either. Since september I have been ill on off. I have had two ear infections, two chest infections, a cold and vertigo. I am asthmatic so i can get quite ill with a cold.

I think the diagnoses of high blood pressure and the constant trips to the hospital and doctors is getting me down. I feel a bit like a human pin cushion at the moment. I also suffer with IBS and have had to cut out many foods which has been hard. Over christmas i eat very little and still my IBS has been bad.

Sorry I am feeling sorry for myself. I am just finding it hard to juggle everything and keep smiling.

Oh i must just add that the endcrinologist i saw was rubbish as all he seemed interested in was the blood pressure and he wouldn't answer any of my questions and his last passing comment of spirolactone is not a treatment for PCOS was great. I then had to see my gp and asked why i had been taking it for 7 years if this is the case. She couldn't believe what he had said. He also told me the three syptoms of pcos and said that they were the main ones that you get. I can't remember what they were but i don't think he really knows what pcos is.

Has anyone else been diagnosed with really high blood pressure like me? I just need to speak to someone as i'm really worried because i am so young to have it.

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Re: Newbie needing support

Postby Hols969 » Fri Jan 02, 2015 9:39 pm

Metformin is not a treatment for PCOS as it is a diabetes drug, do you feel it has helped, did you have IBS prior to being on metformin, this drug can be particularly bad for IBS as well and there is no real evidence that it works for the majority of pcos ladies (according to the research endocrinologists that advise Verity).

If your periods have changed and you are getting more spotty etc then this is an indication of PCOS flaring up, have you put on any weight or anything that may have triggered it.

As for the high blood pressure, I don't think this is related to pcos but it is not uncommon, my old boss had been on BP medication for years and years and he was 35 when I first met him and he is now closer to 50. Something may be triggering it, perhaps stress.

A lot of endocrinologists are very good re pcos as it is their area but some are not unfortunately. Where you referred to him because of the high BP, if so he may have concentrated on that aspect rather than anything pcos related (and you only really have a 5 minute slot!!!) It may be worth thinking of going privately specifically for pcos (there is one in London who is brilliant if you are close to London).

I tend to manage my pcos symptoms by being on the contraceptive pill and have been for almost 30 years on and off, the slight risk of the pill is worth it to mask the pcos symptoms for me.
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