from the uk.....diagnosed yesterday...please help..

emmab2001 · 08-19-2004, 07:45 AM

hello everyone,
it's great to find a site with sooo much information about this condition as my doctor really gave me no info just told me that i had the condition and that i had to lose weight.

i asked him about diets and which would suit me best and he answered with the one were you eat less.

i asked about my chances of having children he told me nil and below that when i get older i can have tablets to try and help!!! i'm so angry me and my partner simon have already lost one baby and now my doctor belives i'm too young to be offered the treatment

the only tablets he has given me are to shead the lining of the womb as i have not had a period for 8 months he did not offer me a follow up appointment and just told me to contact my gp when in a few years i've lost weight

i feel sick we have waited so long for this appointment and now where on our own again!!

what should we do???

(we live in england so i know our doctors follow diffrent guidelines)

emma and simon xxxxxxxxxxxxx

pam24 · 08-19-2004, 08:59 AM

hi Emma

Im sorry you must be so frustrated.

How old are you? I am 24 and have just been diagnosed about 9 weeks ago, i had my first appointment with an endocrinologist about 4 weeks ago he told me i have this condition and to wait and see who wants to deal with me (endo or specialist). I have just recieved my next appointment in september. It is really frustrating to not know what is happening and in your case to not have anything happening. I have been reading up on this condition and this is the best forum i have discovered, If anybody can help you they are in here they all know what you are going through and can offer you great advice. I am a newbie too.
Have you thought about changing your doctor? Alot of doctors dont know much about PCOS so maybe there is another in your practice you can see? At least ask him/her to reffer you to someone at the hospital.

Im sorry i am not much help but good luck

Pam

AndreaC · 08-19-2004, 01:01 PM

Hi Emma,

Gosh, you sound just like me around 5 years ago! I can really sympathise with how you are feeling and you have come to the right place to turn this around

Now, first of all, if you *did* want to try to conceive, you are NOT too young to have fertility treatment. Secondly, tellling you to lose weight is a very common answer from a Dr in this country but neither use nor ornament to anyone.

I am speaking from experience here because when I got my diagnosis (finally, after lots of toing and froing!!) of PCOS around 5 years ago (I was 21), I was told I needed to lose weight and if i wanted to ttc (try to conceive) then they would deal with it as and when the time arose.

My symptoms were mad mood swings, weight gain ( after being very skinny in early teens) and no periods at all.

I was not happy with what they said to me. i wanted to know whether I could have children or not. This was a very important factor to myself and DH and we decided that we wanted to just go for it because I didn't know how things would turn out as the years went on (we had already been together for 5 years at that point).

So, I told them I wanted to conceive and found this website 9godsend!!). I aksed questions and really started to learn a lot, giving me the confidence to just make demands on the treatment I wanted for myself. I had an appointment come through for the Endocrinologist and when I went I pretty much *demanded* they put me on Metformin as this could help me to lose weight and regulate my cycles. They agreed (reluctantly) and then a few months later when I went back I demanded the drug Clomid (fertility drug which makes you ovulate) and got pregnant that first month!!!

Since giving birth to my son (he is now 27 months) my hormones are a bit better and I have managed to lose ALL the weight i gained in my teens (nearly 6 stone). A Dr telling me to lose weight and things would get better is complete rubbish because I have now done that but I'm still in the same position, just slimmer!!!

I still have mood swings when i'm not on the pill and I am now trying to conceive again on Clomid as my cycles STILL didn't return after the weight loss.

I am sorry this has been so long but I just wanted to let you know that a) it's not as simple as just losing weight and correcting everything b) you are not too young to have the fertility drugs if you want them and c) there is hope!

Who did you see? Was it a regular GP or Endocrinologist? You really need to see an Endocrinologist and ask them about the possibility of you being Insulin Resistant (a lot of women with PCOS *are* and this is what contributes to the weight gain). They can test you and if you are then Metformin is a good drug to help with this and can even regulate your periods in the process. There has been a lot of research into PCOS since i last saw an Endo. Even my regular GP knew the connection between PCOS and Insulin resistance so Endo's have no excuse.

If you read this far then bless you!

I hope I helped a little and please ask any further questions you might have.

Andrea.

emmab2001 · 08-19-2004, 07:51 PM

thank you so much andrea for all you info and kind words at last i feel not so alone!!! i went to the gyne doctor at the hospital i've never heard of an endo but i'm going to go back to my gp and ask

thanks again wish me luck!!!

emmaxxxxxxxxxxxxx

pam24 · 08-19-2004, 08:10 PM

Hi emma

An endocrinologist is a doctor who specialises in hormones and can treat the symptoms of PCOS, they help with fertility and weightloss and all the other symptoms. I am hoping to get help with weight loss and to try and get me ovulating again. I hope that you get the treatment you want. If you dont get any joy with your GP find another who knows about this condition as i have heard that many do not know much about it. I have been lucky, my GP delivered my son when he was on the gynae rotation, and has treated ppl with this before, so he suspected it when i saw him last year, and reffered me to the right people.

Good luck

Pam

AndreaC · 08-20-2004, 05:04 PM

You're welcome Emma

Definitely make an apt. with your GP and request a referral to an Endocrinologist. Gynaecology is more the 'physical' aspect e.g. checking your reproductive organs to see that they are working. The Endocrinologist will find the root of the problem (the PCOS) and treat it (well they *should* anyway!!!).

Good luck!

Andrea.

Tuggy · 09-20-2004, 12:13 PM

Hi Emma

I'm so sorry to hear about your experience with your assh*le doctor. I was diagnosed by my endo about a month ago, he told me I have PCOS because of my 'obesity' which is absolutely ridiculous. I'm probably a stone overweight, but nowhere near obese. I was upset to say the least. When I asked him what the best diet is, he said something very similar to you - 'one where you lose weight'. Very helpful.

I believe that as women diagnosed with PCOS we get priority for IVF treatment don't we? It's worth enquiring about anyway. And saying you're too young for fertility treatment is absurd. I reckon you should definitely go to your GP and see a different doctor.

Good luck

Tuggy xxx

yukabee · 09-21-2004, 05:29 AM

the nhs can suck sometimes
but my dr wrote to an endo and I didnt have to wait too long as he wrote back to my gp giving permission to start met so i didnt have to wait for an appointment. It does depend on your gp mines been good and I have seen a dermotologist and a plastic surgeon so I think its a matter of educating yourself and taking this info with you not all drs are aware of the new treatments available.

whatnocaffeine? · 09-22-2004, 01:23 PM

I think andrea's comments were very good. You really do need to demand medication. I know it's not very easy to stand up to the medicial profession... they can be quite intimidating! I was reffred to an endocrinologist too nad then over to the gyno. GP's often don't really understand.

I was on Chlomid 100 mg for 5 months over a year ago with no success. It took me over a year of trying before they would even offer that to me. Anyway, no sucess.

I then had a laparoscopy and my tubes were fine, a tiny dot of endometriosis, which they lasered off there and then. I just didn't get periods. A year or so later they prescribed me provers (to make me have a period), Chlomid again and Metformin (which I demanded... can't beleive they didn't offer me that sooner) With this combination after the second batch.. bammm ....pregnant. Now nearly ten weeks with my first. It's taken nearly three years. There is hope.

If they say you need to loose weight then just do something about it and get metformin and maybe Chlomid. Us girlies with PCOS have a problem with our carborhydrate tolerance and it can be hard to loose weight and get pg. Even though this drug made me feel alittle sick, I personally found it a wonder drug. It is a relatively new drug and my GP's were not confident to prescribe it.

Good luck and hope all goes will. Don't give up... be firm !

Melissa x

emmab2001 · 09-23-2004, 05:41 AM

i just want to thank you all so much for you advice!!

tory · 10-24-2004, 10:37 PM

I just want to join in with the others and reiiterate how important it is to *demand* things. I've had some bad experiences in the past, but the important thing is not to give up.

I've actually never seen an endocrinologist - I've always been treated by the gynaecologist who diagnosed my PCOS. He's extremely good and very knowledgeable about it, and I'm on Metformin as a result.

There have been whispers about taking me off it, but I'm resisting! I've lost about 2 stone (I was slightly overweight) and feel great.

I'm not trying to conceive at the moment, but I'm hoping one day!

tory

britgirl · 10-29-2004, 09:08 AM

Hi there,

Jsut read your post and wanted to say that it is so sommon to hear women who have simply been told to loose weight. I fonly it were that easy. I was told for two years i was normal and nothing was wrong. I changed doctors and got a referal to an endo instead of a gyno. He diagnosed me immediately, discussed options for ttc and treatment more specific if not ttc. he has put me in touch with a dietician, who takes weight -loss seriously as she treats diabetics and thyroid patients too, so knows it is hard.

The sad thing is that if you had wither of these other conditions then you would have support, so it's great to hear that you are getting information and taking control of your healthcare.

Don't be afraid to be forthright when asking for help, i have said to my doctor, 'you are not helping me, so please can you recommend someone who can?' I felt bad being so demanding, but had had no support for two years. I also felt relieved to finally convey my upset and emotion.

I wish you all the best of luck,
Take care,
Claire

Aggs · 10-30-2004, 09:40 PM

Hi Emma

Another "demanding" lady here! If your GP is going to be obstructive I would definitely change docs.

Ask "nicely" to be referred to an endocrinologist, but before you do, try to find out where a PCOS-knowledgeable endo is in your area so that you can tell your doc who you want to see. The first time I asked to be referred I was sent to a gynae who knew absolutely bugger all and it was a total waste of time. After asking in here, I was able to work out how to trace consultants who had an interest in women with PCOS, so I was able to say - "send me to this guy"!. After finding a possible consultant, telephone the his secretary to make sure that PCOS is an interest (sometimes the site gets it wrong!) This link might help:

http://www.drfoster.co.uk/consultant/welcome.asp

It is not up to your doc to decide when you are ready to have a baby - ruddy cheek! Good luck in your search, and if you need any more information, you know where to ask!

HannahLouise · 10-31-2004, 06:22 PM

Was diagnosed with PCOS 2years ago, have tried clomid and had ovarian drilling but neither worked, have jsut been put on Metformin, can anyone tell me how long it takes to start working.

Thank you

hampshire hog · 11-01-2004, 06:27 AM

quick reply to :
hannah louise i was in that situation 13 years ago, had clomid, ovarian drilling, and nothing worked, we had even started adopting, when i went on metformin(thanks to the info on this sight), and within 6 months period showed up, and i concieved on that cycle!!..good luck girl, everyone is different though, some it takes only weeks, some not at all, better of looking on the metformin board!!

gina

emmab

again u sound like me 13 years ago, told lose weight!!and set me up with a dietician...... yeah right, i was wondering where in th uk u live?
i think maybe u should see gp, and insist on another appointment may be with a diff specialist, like u i was young 21, and they said i was young, and had plenty of time to ttc, well turned out it took 11 years.......and mainly thanks to the info on soulcysters, and the advice given to me, especially, those in usa, where things are at a more advanced stage, than us here in the uk.
i have to admit i was lucky, coz my gp has pcos, and agreed to use me a guinea pig, and let me try metformin, without sending me to a specialist, in 2002..

dont give up hope, there are a few medications about to treat sypmtons of pcos, and help with infertility, u just have to gather as much info as possible, print it, and see gp, insist u want to try these drugs, after all its your life, if gp wont listen, change doctors!
your gonna do it, be strong

hugs

gina