Hormone Testing

[MaggieMagpie1]

Hi

About 30 years ago I was diagnosed with PCOS through explaining symptoms to my GP. Unexplained sudden weight gain, excess hair growth, irregular/absent periods etc. At the time I was told that as I wasn't TTC then it wouldn't really affect me, was put on Dianette ( a version of the pill) and told basically to get on with it.

The Dianette worked really well for the excess hair, which in my teens was probably the most difficult issue to deal with. It wasn't known as the time that it wasn't meant to be taken long term, and I was on it for about a year until they realised that and I was taken off it. I tried other versions of the pill and none of them worked other than to regulate my period.

I never wanted to be a parent, and so I just muddled along with the condition as it was although it did cause some distress, particularly about my appearance. About 10 years ago there were some further tests done as I felt that my symptoms were getting worse. I was sent for an ultrasound scan, and was told that I didn't have PCOS as I didn't have any cysts so it couldn't be that. It was determined that I had a hormone condition "of some kind" but they couldn't tell me what.

Since then, things have continued to get worse, particularly with my weight. I'm at least 6 stone overweight. I know for a fact that I don't have the perfect diet, but It's good in the main. I cook from scratch, eat lots of whole foods and veg, drink water etc. After having a few years where my periods were fairly regular, they've stopped again. I also realise that as I'm mid 40s this could be menopause related.

I'm feeling really down about all this, and I really want to do something about it if I can. I'm doing some work with a PT on my nutrition and exercise to try and improve that but it's hard work and slow going.

The NHS won't do any more tests for me or any more work to find out what's going on, so I wondered if anyone had any experience of this and whether private treatment would be of help? I would have to get my GP to refer me and go from there I think. Is there any point? Do I just keep working on my diet? I'm just lost.

Any help would be appreciated.

"About 10 years ago there were some further tests done as I felt that my symptoms were getting worse. I was sent for an ultrasound scan, and was told that I didn't have PCOS as I didn't have any cysts so it couldn't be that. It was determined that I had a hormone condition "of some kind" but they couldn't tell me what".

I think you were fobbed off and dismissed because they could not apparently see any cystic follicles. These associated with PCOS do disappear only to be replaced by other cystic follicles. As they are very small too, it can take a skilled operator to spot them. I think your GP was correct btw; all those symptoms you wrote of can indicate PCOS.

At the very least now you need an up to date internal ultrasound scan to assess the state of your ovaries and uterine cavity. Weight should not be a barrier here into you getting treatment.

Collette Harris, herself a PCOS patient, has written cookbooks with the PCOS patient in mind. You may want to try out some of her recipes. Some PCOS patients follow a low GI/GL (glycaemic load) eating plan.

Some private treatment can be poor as well as expensive so it pays to do your researches thoroughly before handing money over. I would also look at Verity's website as this is about PCOS and is helpful. link here:

www.verity-pcos.org.uk/

I have PCOS and Ozempic is really helping me to lose weight.
I only have 1 cyst. It has been there for ever.
Have you ever had the blood sugar test? I had that as part of my diagnosis.
If you are insulin resistant it is really hard to lose weight. And that is common with PCOS.
You have indeed been fobbed off.