Polycystic Ovarian Syndrome (PCOS) Community
I feel really out of the loop...
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This patient support community is for discussions relating to PCOS including anxiety, baldness or thinning hair, high blood pressure, high cholesterol, depression, type 2 diabetes, genetics, heart problems, increased hair growth (hirsuitism), infertility, menstruation (periods), obesity, ovarian cysts, pelvic pain, pregnancy, skin problems, sleep disorders, and weight gain.

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I feel really out of the loop...

After suffering for 2 years with most of the symptoms of PCOS, I went to my local GP to get checked out. She told me that she thought I might have the condition so sent me for blood tests ( testing at least 4 different things which I can't remember now as this was the first and last time they were mentioned) and also a trans-vaginal ultrasound. When I went to the doctors to get my results back for these tests she told me I definitely did have PCOS and then she put me on Yasmin (contraceptive pill) and also gave me some antibiotic cream to help clear up my acne.

I feel quite out of the loop as I went for all these tests and not once has anyone actually sat down, shown me my results and talked me through them? I just got told I had PCOS and that I was to go on the pill.

Since being diagnosed I have been reading a lot about  this condition and other people's experiences with it and I've been shocked to read that others have been referred by their GP to a specialist upon finding out they have it , which I was never offered. I have since been back to my doctor as not only are my acne and periods still bad, I also have new, painful symptoms in my lower back and lower abdomen area. I asked if I could see a specialist so I could talk everything (test results, best way to manage it etc) through with someone and my doctor dismissed the idea straight away, basically saying that PCOS can be managed under the care of a GP and there was no need to go to a specialist.

My question is, has anyone else had a similar experience? Is this really how they diagnose and treat PCOS... "Yes you have it... Take this once a day and shut up about it" did anyone actually get their test results explained to them and get referred to a gynaecologist to talk the condition through?

I have now been taking Yasmin for a year and, although I have a fairly normal cycle now... All my other symptoms have stayed the same or got worse. I have changed my doctor since then but the last one made me feel so silly for asking to see a specialist that I feel awkward about asking again.

Please share your stories whether similar or not. I'd really like to know how many people actually got a proper diagnosis so I can figure out if my last doctor was right or not.

Thank you in advance :)
6 Comments Post a Comment
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5981477_tn?1396046214
Hi :)

When I was first diagnosed with PCOS I was 19 (so very recent) I was told that I would be seen by a specialist but then nothing happened so I can understand your frustration of people doing nothing.

However depending on your age your doctor may have automatically assumed you would want the pill as it can help control symptoms of PCOS. I refused because me and my partner are trying for a baby so I had to make an appointment myself for my doctor and explain we want to try for a baby and that we need help. We need tests nut they promised to refer us again to have treatment to help us in this.

I would say your doctor will only sadly refer you to a specialist if you are actively trying for a baby without success.

I hope this helps hun :) x
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Avatar_m_tn
Hiya,

Thanks for replying and sharing your experience with me.

I'm 27 years old and have no children, I am currently in a long term relationship and have had PCOS for about 2 years (diagnosed). I can't help but feel let down by my doctors as I only really learnt what PCOS was AFTER I'd been told I had it and thats only because I educated myself by buying books and looking up info on the internet. My doctor literally just said I had PCOS and then gave me a prescription for the pill saying it would sort it out. As i'm in my late 20's I feel I should at least be able to rely on my doctor to explain whats happening to my body and treat me like an adult. It just frustrates me a little, I wasn't even asked if I was in a relationship, trying for a baby etc... They just stuck me on the pill in my late twenties and made out like there was nothing else to do about it and then they had the cheek to make me feel stupid when I later asked if there was someone I could speak to about other options.

My experience with Gp's and PCOS is that they treat me a bit like Im some fresh faced 16 year old asking to go on contraception for the first time. But I'm on the pill because of PCOS, not because I don't want to get pregnant... It's completely different. I also had severe problems with weight, acne and a bit of hair loss when I first went to the doctors, a year later their 'pill' that was supposed to make everything better Had made it all worse and I mainly asked to see a specialist because I wanted to talk to someone who knew the condition and knew what they were talking about to see if I could overcome these symptoms as I felt very low at the time... I am still trying to overcome them by putting myself on a strict low gi diet and finding the right products for my skin and hair , but I have done this through Internet research not through any help from my GP.

I know many Women are affected by PCOS at different levels and I know there's not really a proper treatment for it but I think they need to start giving better one on one care to Women suffering with it instead of treating every case/Woman the same.

I was told i had it at the age of 24, Me and my partner aren't financially stable enough to have children yet but we do want them and I just worry that if/when we come to try and I cant get pregnant, i'll be well into my 30's and too old for specialists to really worry about as i'll be near the end of my childbearing years.

I feel like I've just had a massive rant, sorry :( I really appreciate you getting back to me and I really really hope all goes well with your specialist appointment and you continue to get the support you need.


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Avatar_m_tn
I was diagnosed with PCOS when i was 19, as you said they told me you have PCOS and gave me some medications. When I ttc for the first time, I got pregnant after 7 medicated months. Now after 4 years,I'm 33 years old, I've been ttc for over a year,I did 2iui the last two months with bfn, my RE told me we were going to ovarian drilling. When I searched on the internet, I found that the problem is much more bigger than  PCOS or infertility, it is a problem of insulin in your body and it can lead to severe diseases and that is a thing doctors didn't mention it. I started today the two weeks test of carbohydrate intolerance. I read that low carbs diet reduces the symptoms of PCOS, I hope it will help
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Avatar_m_tn
http://philmaffetone.com/2weektest.cfm
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Avatar_m_tn
Hey, I was told I had pcos when I was 14, and just stuck on the pill and got nothing, then at 16 when nothing was better I went back and was told I didn't have it but could stay on the pill, then when I was 18 ( about a month ago) I went to a different doc and have been told I do have it over the phone and wasn't even asked to go back at all, there has been no explanation of anything or how to deal with things, I have chosen to come off the pill myself as it made me very sick, and I have booked myself another appointment with a different doctor to talk to them specifically about my weight as I have a real problem trying to deal with it, it seems like people hear pcos and think its nothing, unless you have it people don't realise there is a lot more you have to deal with then just irregular periods. I know this doesn't really help you but I just want you to know you are not alone in feeling alone! Hope you get some help soon! And if no one will refer you do it yourself it's the only way I'm getting anywhere
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Avatar_m_tn
Thank you to everyone who has taken the time to reply, I really appreciate it and have taken something from every comment :)

I really feel for you Porcia94 as your experience is so similar to mine. Like I've said previously, if a general practitioner doesn't feel the need to refer you onto a specialist for this problem then in my eyes it falls to them to make sure they are treating your problem fully... As we all know not everyone with PCOS has the same symptoms and I think for gp's to only treat a part of the problem (i.e irregular periods) is really counter productive.

No matter how good the pill is... or is not, it's just not going to help with all of your problems. Other symptoms such as being overweight and having hair loss for example should also be addressed. I have literally been in tears in front of my doctor because of weight issues and skin problems but I have never been offered anything to work alongside the pill.

Through research I have managed to find my own remedies for some symptoms... I am on a strict low Gi diet to lose weight which seems to be working as well as helping some of my other symptoms. I have also found a skincare brand that I think is amazing for acne, it's called exposed skincare and they have a guarantee to clear your skin within a certain time or you get your money back. It's quite expensive but I find its the only product that works for me so it's worth the money in my eyes as my skin is one of the things that really gets to me and makes me feel low.

If I've learnt anything from these posts and research on the net, it's that GP's are really only there to treat certain symptoms and the rest is up to you, I can understand this as the NHS is limited in its funds and treatment but I think they should be providing advice and information to guide you in the right direction so you can manage and understand PCOS better. Talking to patients and explaining things better doesn't cost anything.


Thank you all

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