Nhs Doctors

[Pinkflutterby]

I think I have finally got to breaking point. I have waited over 4 months to finally see a specialist, all the while I have been getting iller and iller and do you know what he says.

"Lose a bit of that puppy fat, and the pcos with disappear. In the meantime take the contraceptive pill and I will see you again in 6 months time,"

Believe me I almost grabbed him by the throat and threw him out of the door.
1) Puppy fat! I'm 22
2) I am TCC, How is the contraceptive pill gonna help?
3)The contraceptive pill was the start of all my problems. I have balloned over the last 6 years from a size 12 to a size 22.

Does anyone know any PCOS friendly doctors in and around Portsmouth or Newbury that I can talk too. I have had enough.

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21 Years old
Getting married soon
DX Febuary 2002
500mg vitex
Doin' the natural thang first.

'You people have stood in my way long enough, I'm going to clown college'

[Eva34]

Hello

((hugs)) so sorry your Dr doesn't 'understand'

Eva

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Age 35, dh 29, married 8 years, one son 4 years old

DX pcos Jan 2001
DX ibs Dec 1999
Dx LOCAH Sept 2001
Hidradentis Suppurativa
(lumps)
Cervical Ectropion
Raised blood pressure
High Cholesterol
Loads of meds - too many to mention!!

"She is buffeted by the waves but she does not sink"

[Shira]

Hi, I replied to your post in Rant. Let me come with you and kill this man! Where does he get off being so f******* condescending???? argh.
please tell me you're not going back on the pill. I went from a size 14 to a size 26/28 in 2 MONTHS!!!!

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No-one ever said that it was going to be just, you really ought to know by now how She's all red in tooth and claw; after all, weren't you the one screaming for more?

"It's a tattoo. Of COURSE it hurts."

"Most people can't see the wood for the trees. I see the wood, and the trees, and the small village beyond and what's more, I have a flamethrower."
"The best forms of torture rarely hurt" - Charon
feel free to email me at redshira@gothism.zzn.com

[meggie]

Pinkflutterby,

I am really sorry to hear of your terrible ordeal. It reminds me very slightly of the time when at the age of 16 I went to the doctor because of my acne. The doctor did not even look me in eye and prescribed some cream. I so wish he had asked me some more questions about hair/periods etc and maybe my pcos would have been diagnosed much much earlier. Of course at the time I had no idea about pcos and didn't have the confidence to press him any further.
My pcos was later diagnosed about 10 years later.
I now see a specialist in a hospital in Haywards Heath West Sussex. I wouldn't say he is marvelous because I don't get to see him very often, but at least he does seem to understand about pcos and IR. Although he thinks I'm not IR because I am thin he is still prepared to put me on metformin. I haven't yet taken him up on his offer yet as I seem to be dealing with the sypmtoms fairly well with diet, exercise and supplements. However, my cycles are still very long, and as I am now TTC, I might just take him up on his offer.
Haywards Heath is maybe too far (about 1.5 hours drive, I often visit IOW so I know!) but I wanted to let you know anyway.

I really hope that you can find someone to listen. You must be confident and say what you want it is your future at stake.

All the best.

Meggie

[Pinkflutterby]

Thanks everyone!

[This message has been edited by Pinkflutterby (edited 05-13-2002).]

[Pinkflutterby]

I was talking to my brilliant mum and she says she doesn't care how much it costs, she wants me to see a specialist privately. I am realived but I am so annoyed that I have to go privately because some berk with a medical certificate thinks I am not worthy of his time.

The thing is, I am getting really bad pains around my ovary's. When I stand up or strech it feels like I am beeing pulled apart. The doc says that it is normal for women with pcos but he is sending me for a ultra sound......in 4 weeks time!

So if anyone knows of any good private doctors I would love to hear from you. But I have decided not to go on the pill again. It will do me more harm than good, plus the last time my blood presure stayed through the roof.
Thanks for the support!

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21 Years old
Getting married soon
DX Febuary 2002
500mg vitex
Doin' the natural thang first.

'You people have stood in my way long enough, I'm going to clown college'

[Shira]

Pinkflutterby
I am so happy you're not going back on the pill, but let me be the bringer of gloom and doom once more: private doctors may not be of much use to you either, as BUPA are still stupidly advising that removal of the ovaries will get rid of PCOS symptoms...they still don't really know much and will just be nicer to you when they tell you to lose weight. They don't know about insulin reistance or anything. Some of them may be clued up, and as I said, if you're paying them they might be nice, but you really need Metformin and they are even less likely to give it to you, what with licensing laws being what they are. The thing to do really is to try and find out which doctors are prepared to prescribe it before you go paying. Phone around and ask. Then, once you've found a decent one, pay once and then you'll get seen sooner by the same doctor when you go NHS, but oh, beware of the change in attitude when you go from paying to non-paying.
Good luck, let us know what is going on. And remember - you need to see a reproductive endocrinologist, NOT a gynaecologist.
hugs
Shira

------------------
No-one ever said that it was going to be just, you really ought to know by now how She's all red in tooth and claw; after all, weren't you the one screaming for more?

"It's a tattoo. Of COURSE it hurts."

"Most people can't see the wood for the trees. I see the wood, and the trees, and the small village beyond and what's more, I have a flamethrower."
"The best forms of torture rarely hurt" - Charon
feel free to email me at redshira@gothism.zzn.com

[sammyd]

Flutterby,
Read your post. Unfortunately you have to fight for what you need on the NHS, I know my dad is a GP and he couldn't really help me. Even tho he dx me over ten years ago, the treatment wasn't/isn't always available on the NHS. Go private! Try calling PPP, HSA or BUPA, you need to check that Endochronology is covered on their schemes. I was very lucky and found my endo through my GP, but that's in Bucks, but if you're prepared to go to Newbury you may want to go a little futher to Great Missenden.
His Name is Dr Ian Gallen, at the Chiltern Hospital, it may be worth phoning or writing to him and seeing if he can recommend someone in your area. These Drs usually know someone or can find out for you. Dr Gallen is great. One thing you need to be aware of you need to be referred by your GP. If you can find the name of an Endo in your area you then need to demand your GP to refer you and don't take no for an answer if he won't go to one of his partners. But you need to have Private Healthcare set up or it will cost you a fortune. I was lucky as I found Dr Gallen with the help of my company healthcare scheme, but I still had to pay a £200 excess on that. The consultations are approx £50 each, but you pay extra for blood tests, scans and the prescriptions are private and can cost £20-25 for 2 months of Metformin. Give it a go. It will work wonders for your self esteem to have someone acknowledge that there is somthing wrong. Dr Gallen took one look at me and said he didn't need to see the blood tests I had, he could tell.
I also went to see a Clinical Nutritionalist who did some Food Intolerance tests for me, she said I was Intolerant to wheat, dairy, yeast and sugar, gave me a plan to follow with some supplements and I have lost half a stone in four weeks,(can't quite give up the alcohol as well as everthing else just yet), my periods are slowly returning and the acne has diminished.
Chin up. We can get through this together!

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LOL
Sammyd
PCOS Cysters of the World Unite!!

[Georges_mum]

hello!! both me and my sister has pcos..im in bognor and the dr's there are ok but not brilliant,and my sister is in Newbury,she has had some treatment and seems to have had some very nice dr's there.I can find out which hospital she goes to and which dr she saw if u wantEmail me if u want me to find out for u.

[Sue M]

I can completely see where you're coming from! I've noticed that I have PCOS for at least the last 10 years and it's taken me 2 years of fighting to get a GP to test me for it. So when my GP finally admitted I had it and that she'd refer me to an endocrinologist I was delighted. When she said that it would take 5 months as it's "not a life and death condition" I was really angry. So my SO and my family are going to help me to go private. Guess what? I have had to wait a whole week for an appointment and it's with exactly the same consultant in the same hospital, the only difference being that I'm paying him. And boy am I going to get my mnoney's worth! I'm not going to be made to feel stupid for complaining that I'm overweight and can't lose the weight, that I'm a hairy monkey and that my poor SO is suffering due to my mood swings. And I'm going to get every pennies worth!

I'm on the pill and I've slowly ballooned while I've been on it to my current weight of 13st, size 16/18 and 32G boobs. I hate it! I love the contraception side of things but hate the weight gain. Why can't life be straight forward!

Best of luck seeing someone. I know exactly what you're going through. I wish us all luck!

Sue
xxx

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If you lose hope you lose everything.

[Pinkflutterby]

UPDATE!!!!!!!!!!!!!!!

My Mum, my fiance and my dad sat down and decided that the best thing for me to do was to go private. However, I read a post that said your gp MIGHT prescribe you metaformin. My fiance (being the bio medical scienctist that he is) found an article in the BMJ saying that metaformin was benifical to women with pcos. I now have a copy of it, my medical reports from the family planning clinc (you know these guys don't share records!) saying that I have a horrible reaction to Diannette and I am going to my gp and seeing what he can do. If and when that fails mum has found me a private doctor in london who specialises in PCOS and we are going ASAP! Thanks everyone for all the support. You can't imagine how great it is to come in here and know that I am not crazy! Good luck eveyone! Michelle

[StephUk]

Hi, Im sorry your doc is an idiot.
I am very very lucky, after my initial bout of a good five years where I had bloods done and numerous scans (external and internal) only to be told by my GP "dont be silly, nowhere on your notes does it say that you have PCOS".
I was convinced, when the doc was outta the room I sneaked a look at the results sheet and it plainly said several follicles of cysts.
A good few years passed by and I met my hubby and we began to try for a child...I knew it was futile because by that point I was having a period maybe every year or so.
I asked my GP to refer me to the fertility specialist at the local hospital, which he did....they scanned me and said it was very obvious that I had pcos, she even turned the screen around and I was shown the cysts on the scan....they followed up with bloods and the results were very obviously as they expected...how they had missed it they didnt know because it was screaming at them!!!
Alot of things happened the next few years, I was always sent away to lose weight for six months and then again when I hadnt lost any. Finally the Gynae decided to try Laproscopic Ovarian Diathermy and a few rounds of Clomid which didnt work in the least. She said that she had tried but as she had expected I fall into the grouip of overweight PCOS sufferers that cannot become pregnant at this weight....I was so upset that I didnt go back.
This year I went back to my GP (his son actually) and asked for him to send me back...I am ready to do whatever it takes.
I had around a two month wait to see the gynae but as soon as I walked into her room she smiled and said that she was going to test me for IR and even if that came back as negative she understands how hard it is for me to lose weight and she will put me on Metformin in July and when he weight statrs to come off (we hope!!!) I will start hormone injections, she looked me in the eye, held my hand and promised that if I put the dedication in she will get me pregnant and keep me that way.
She is an absolute star and I am just so thrilled to have her, she has dropped my time inbetween appointments to at most 8 weeks to keep me motivated...she's great!!!
Just thought Id share this all with you and wish you luck with your future xx

[anz_uk]

I can sympathise with this, I was first diagnosed back in 1990 I think. I had some tests done because my weight ballooned suddenly and was told there was nothing wrong. Then in 1996 I went to the doctors in severe pain in the ovary area and I'd been bleeding for several weeks, looked at my records and said oh yes you've got PCOS. I was like excuse me what?? She had a letter dated the same day as mine from the same doctor, only my letter said there was nothing wrong with me! Even after ending up in hospital, the gynae sent me away telling me I had to lose weight and put me on Micronor, which did nothing at all. I even went to my doctor 2 years ago and asked her to put me on Metformin, I went armed with info I'd printed off the net but she refused. It's only since moving to Wales and finding a new doctor who was wonderful, she actually listened to me when I told her I had PCOS, that I was so depressed and I was having severe panic attacks and crying at work, and now on Monday I have my first proper appointment with a gynae consultant. I was sent to see him nearly 2 weeks ago after I saw another doc as mine was on holiday, telling her I'd been bleeding continually for 3 weeks (I came off the Micronor a year ago as my hubby to be and I were trying for a baby) and that I was in pain and she sent me straight to the hospital. Mr Roberts was excellent, assured me he'd help me and gave us the most simple explanation of PCOS I've ever had it. He said the first order of business is to get my insulin levels down then to check out the infertility. This Monday is my appointment with him so wish me luck, it sounds like I'm finally on my way. I guess the moral of the story is hopefully we'll all get there one day. Doctors can be so unsympathetic sometimes, I continually went to the doctors throughout my teens complaining of no periods and she'd send me away saying I was a silly little girl with puberty! The wonderful thing about sites like this is you get to talk to women who have gone through/are going through the same as you and it always helps to talk. Thank god for the internet. Enuf of my ramble anyways, luv Anz xxx

[Sue M]

I went to see an endo privately. I had to wait a week for an appointment. After my appointment, I had a letter from the NHS saying that the waiting time was 25 weeks on the NHS! Ridiculous!

The endo that I saw was very good and sympathetic. He's prescribed me Met and Spiro and says that I never need to see a specialist again. If I feel ill on the mediaction he says I should go back to the GP, but my GP can do all my repeat prescriptions. So for the amount it'll cost me to go private (waiting for the bill but it won't be more than £150) I've cut 24 weeks off my waiting time and I have piece of mind and medication. It was the same endo that I'd have seen on the NHS just a lot quicker!

Best of luck with your fight!

Sue

[Pinkflutterby]

This week I had my ultra sound and yes ( big shock horror!) I have cysts on my ovaries and yes I have PCOS.

I almost died of shock!! (Giggle).

On a more dramatic note, I have got a appointment with a Dr White at St Mary's in London to go on a Metaformin trial, so all I have to do is go to my GP and get him to refer me.

However, sod's law being sods law he won't.

I will keep you posted.......
Maybe I should sell my story to the BBC, make a great soap opera.