My Story...

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

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My Story...

Postby Sunflower » Wed Jan 05, 2005 2:32 am

Well, my jigsaw isnt complete yet but here's the story so far:

I've been taking the pill since I was 14. Mainly because I used to have bad skin. I started off on Dianette. A while later I started experiencing excruciating period pains and would quite regularly be found crunched up on the floor in absolute agony. The doctor then changed me onto what they described as the "old fashioned" pill Mycrogynon and I've been on that ever since.

A few times over the years when I stopped my pill, I wouldnt come on and each time I went to the doctors and as per usual they'd take a urine sample. Typically either just before I went to see the doc or while waiting for the test results I would start bleeding. Nothing was ever progressed, partly my fault I admit as soon as I started bleeding, I stopped being worried about it.

Well In January 2004 I came off my pill as I did every month and yet again there was no bleeding. This time I didnt bother going to the doctors. II didnt start taking the pill again and I just waited, and waited, and waited. Three months later there was still nothing happening so I went to the doc. A friend of mine had mentioned PCOS and I'd looked into it a bit on the net and suddenly lots of other things fell into place, the hair (I just thought it was one of those things), not being able to lose weight (it had always been so easy before), the list went on.

I was pretty scared by the time I went to the docs and although his words were kind, all he could do was put me on a waiting list for a scan. So I waited and waited and waited some more. 6 months later I got to have the scan (not bad really for the NHS :lol: ). I had an ultrasound and then an internal one too. The nurse told me there were cysts on my ovaries. Told me the doc would probably give me some pills to regulate me.

Phew! At least I now knew what it was. Still felt a few things niggling me though. How can a tablet regulate something that hasnt existed for the last 9 months? I joked with my friend that if I was pregnant I'd be due any day now. Jokes to hide to worry I guess. Although I was now convinced it was PCOS, I still felt kind of unfulfilled.

Went back to the doctor 2 weeks after the scan (as instructed by the hospital) and the doc I saw this time was useless. I know we are supposed to be working with them on things like this but how am I supposed to answer questions like "Which symptom do you most want to cure" without any information on PCOS or the various options? Anyway then I was referred to a gynae.

I waited and waited again and in December I received a letter giving me an appointment on 17th January 2005.

What really broke my heart during this is my best mate fell pregnant. It wasnt the fact that she is expecting that made me sad. I was overjoyed for her and it means I get to be God-Mum again (Im already God-Mum to her first child). What hurt the most was that she didnt want to tell me because of what I was going through :cry:

So that's where I'm at. 12 months down the line and all that's really happened is a scan :?

I'm armed with a list of questions to ask the gynae anyway. Thanks to Verity I'm alot more informed on the whole thing now so no longer feel that I'm diving into the unknown at least :D

Thanks for listening. Sorry if I rambled :oops:

Postby Lynne » Fri Jan 07, 2005 1:22 pm

I have to say I have had a very similar experience with lack of information and unhelpful doctors.

I came of the pill at 17 after only being on it for about a year and went 9 months with no period, after several pregnancy tests I finally told my mum who took me to the doctors. After much questioning and a couple of blood tests they discovered my Prolactin level was rising and they suspected i may have PCOS. I was in the middle of my A-levels, which at the time is very stressful. The words from my doctor we as follows:
" We suspect you have PCOS and may have not be able to have children also with your prolactin level being raised we are concerned and will monitor this as it could indicate that there is a tumor in your brain. But stress does not help this situation!"

Well as you can imagine my world fell apart. I was put back on the pill and told to come back when i want kids. Only until 3 years ago did i find a nice doctor who agreed we need to get a definate answer as to whether or not it was PCOS and it was.

I am now 27, married and want to start a family and yet again am recieving very different messages from my doctors - one telling me i just have to live with it! What shocked me most was that comment came from a female doctor.

I have finally been reffered to a gynae and saw the SHO who made the mistake of telling me he doesnt know very much about PCOS. I have to do some blood tests and will be returning back in march.

I dont have much faith in the NHS at the moment and am waiting to see what happens. This is not an easy condition to live with and am sorry that you've had as bad an experience as mine so far. Verity have been a god send to me and have armed me with the information i need to help make some doctors take notice.

Thanks Verity


Postby Sal » Fri Jan 07, 2005 4:15 pm

I'm so sorry you both had such bad experiences. Unfortunately mine hasn't been great either. I have been overweight all my life but it piled on when I was a teenager and nothing I tried helped me lose weight. When I was about 13 I was put onto Dianette for my terrible acne (face, chest, back and shoulders). When I first came to university (I am a medical student) I lost lots of weight by exercising a lot and pretty much starving myself-it was the only way I could get any weight off. Then three and a half years ago I fell in love with my fiance and the weight piled on again-I now weigh 18 stones.

I've also suffered with depression for many years which got to the stage when I was about 13 that I tried to self harm-thankfully unsuccessfully. I never got up the courage to talk to anyone about it until about a year ago when I went on to anti-depressants and had psychotherapy, both of which really helped.

The only reason I found out I've got PCOS is because I'm training to be a doctor and just so happened to talk to someone who had been diagnosed. The insulin-resistance symptoms, weight, acne and hairyness clicked in to place so I started to do some research. None of the GP's I saw knew anything about it and I have just been so fortunate that I am in a position to go in and tell them exactly what tests I needed and the treatment I want.

Now I have been referred to a wonderful endocrinologist who actually knows what he's talking about! It just makes me so angry that I have had all the classic symptoms for 10 years and yet not one doctor has even mentioned it-I had to diagnose myself.

I am so relieved to finally have an explanation for all of my symptoms but I am absolutely terrified that I may not be able to have children. I can't tell you the number of hours I have spent just sobbing.

Doctors should be ashamed of their lack of knowledge of PCOS-it affects such a huge number of women and it is actually easy to spot if you know what to look for. I really cannot understand why it is so ignored.

I'm now on metformin and have just started the GI diet and I am desperate for it to work. I'll let you know how it goes!

Verity is a wonderful resource for anyone affected by PCOS and I know how much it has helped me. Hopefully it will give women the information they need to go and demand proper treatment from their doctors.

I wish you both all the best and hope that everything works out for you.

Sal xx

What now?

Postby Sunflower » Thu Jan 13, 2005 9:17 pm

Hi, I'm not sure if anybody will be able to advise me as I'm sure all of our experiences will differ somewhat.

I have my first gynae appointment on Monday and I basically don't know what I'm going there for.

It is to discuss treatments? have more tests? I've just got no idea.

My head is buzzing with questions yet at the same time I just don't know what to ask.

I felt so confident before that armed with my new found knowledge I knew exactly what was going on but now I'm just soooo confused :oops:

Postby Sonia » Thu Jan 13, 2005 9:36 pm

Hi Sunflower :lol:

Having read all the posts I thank my stars that I had better treatment from the doctors from the beginning and since!

What do you expect/want to get from the gynae? What are your particular concerns you want adressed first off? Is it fertility? Weight? Excess hair? skin tags? As you've found your way to this site I'll assume you have a general idea of what PCOS is and the various symptoms. All :roll: you need to do now is to figure out what you want to do next? Not easy, I know.

See what the gynae says when you get there. Ensure that anything you don't understand is explained fully and clearly. I suggest you make a list of your problems and what concerns you have, what you'd like to tackle first off and then see what happens. It might even be an idea to print off info from this and other related sites on particular symptoms, maybe even suggest more tests.

Whatever you do, do not come out of the room til you feel that your concerns have been listened to and that you have a progress plan. If you not happy then you might have to consider changing doctors, especially if the gynae is not PCOS-aware and not all of them are.

Good luck with your appointment and let us know how you did :thumbs up:

PS: If you live in London, Dr Gerard Conway runs a clinic at the Middlesex Hospital. Very helpful I've found so far even though my symptoms are very mild compared to other cysters.

Postby katy » Wed Feb 09, 2005 2:08 am

Hi everyone,

I have recently joined verity and found it excellent for info on PCOS. As the doctors havent told me a single thing. So thankyou Verity!

Well, heres my story....

Im 23 years old, and was diagnosed with PCOS in Nov (3 months ago).

I went onto the pill (ovranette) when I was 17 because my periods were irregular & when I did get one it lasted a long time (2 weeks sometimes). I just stayed on it out of habbit really, then I got married and just kept taking it still.

Just over a year ago (Nov 03) I started to get really ill around the time of my period - dizzy, sick, headache, almost fainting. So I went to the doc and I decided to come of the pill as I'd been on it so long. My periods stopped completely & I started to feel very ill a lot of the time - tired, headaches, no energy, insomnia, very moody, and feeling angry a lot.

I kept going to the docs as I was fed up of feeling so ill. She said to me "she didnt know what was wrong, but maybe I was slightly depressed" even tho I insisted there was nothing for me to be depressed about. So I started taking some anti-depressants just incase I was, which did seem to calm me down but I still felt ill and still no period.

Then I finally got a period in the July, but then no more after that, but every month I would get all the signs of a period - cramps, spots, PMT, cravings, but no period, which worried me because If i was getting the signs that I was coming on but wasnt, I was wondering were it was all going.

Then my doc decided I needed counselling for my depression - this made me really angry & upset and I refused as I didnt see the point - she asked "What was I afriad of that would come out in the sessions?". I stopped taking the anti-depressants as I didnt like the thought that I was taking them when I probably didn't need to. My doc wanted me to stay on them a little longer, but I didnt.

She also kept doing pregenancy tests on me!! Even tho I insisited I wasnt pregenant.

Then they took blood tests which they said were all normal. Then because I kept going back almost every other week she sent me for a scan & internal scan to. I only had to wait 2 weeks for this.
When I got the scan done the radioligist said she couldn't beleive it hadn't shown up in my blood tests as it should have been obvious.
I was so relieved there was actually something wrong with me, as I was starting to think it was all in my head.

I then had to change docs as I'd moved. Went to see my new doc - who was male & told him the whole story & he said "there's nothing to do about it, and just leave it until/if I ever want to get pregenant, also PCOS doesn't have any symptoms so I wasnt feeling ill & down because of it, so here take these anti-depressants, also they wouldnt have found out I had PCOS if I hadn't kept going to the docs, as it's usually only found in women who have difficulty conceiving". I went home and cried so much, I was so angry at how insensitive he was. I didnt take the anti-depressants.

I went back to see another doc, after I'd read up on here about it all and asked him questions and quoted the things Id learned and he said I seemed well informed about it all - told him it wasnt any doctors doing, I'd found the info myself on Verity. He prescribed me Dianette which Ive been taking for 2 months, Ive had periods while im taking it (very painful ones), but no improvement in spots (face, back, chest & tops of arms/shoulders). I dont have a weight problem, but have a bit of hair problem (which I think is getting worse)!

I was wondering if I've had PCOS all along from when I went on the pill when I was 17, but not realised as I'd been on the pill all the time.

Thankfully my husband has been very supportive & helpful to me and put up with my moods & tantrums when I have them.

Anyway thats my story... sorry its so long. And it only took me a year to get sorted. I really feel for you ones that its toook several years.

Im so glad I found verity as I probably wouldn't have a clue about anything to do with PCOS otherwise.

Katy xx

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