recently diagnosed PCOS sufferer, any advice welcomed

[pam24]

hi all,

i have just joined this great and very informative website, i have only just been diagnosed with PCOS and have just had my first appointment with an endocrinologist. He is referring me to a PCOS specialist to decide who is best to treat me. As i have only just found out about this, i have looked up everything i can on it and still quite confused.
I am now waiting for a futher appointment (who with i am not sure) and what i want to know is, what do i need to know? i have read many posts on here and i see all these abbreviations for levels of LH and so on, what are these? and do i need to know my levels?
I am not sure what i need to know and what is important, i know that i am not ovulating, have had increased weight gain since my son was born 4 1/2 yrs ago (although i have lost 2 stone since christmas) skin tags on my neck and have hair on my chin and upper lip (very embarrassing) my periods are usually regular although very little blood loss.
If anyone can give me some advice i would be extremley grateful

many thanks
Pam

[IrishLass]

Hi there,

I'm pretty new to all this too, basically my advice is to read a little on SoulCysters. Your gyn will do a series of blood test and scan the ovaries to determine PCOS.

My gyn gave me 2 options: do I want to try for a baby or do I want to get the 'hair' situation under control. For me I picked the 'hair' option and was diagnosed diannette. So thats a good thing to think about before you see him.

regards
IrishLass

[pam24]

Hi Irishlass,

I had my first appointment last week with the endocrinologist where he has taken more blood tests (dont know results yet), i had a scan about 6 weeks ago to determine whether i had polycystic ovaries and that has been confirmed. Doctor has said all symptoms i have consist with PCOS and is reffering me to the specialist at the local hospital where they hold a clinic for this condition monthly.

What are the abbreviations ppl are using i.e LH and so on? Am i supposed to know what these are? And how important are they?

Thankyou for your reply

Pam

[wendsUK]

Pam,
Where about are u in the UK?
I'm treated in London but the Dr's there wont do anything for me till i loose weight. Well my point is to them i'm over weight because of the PCOS, I'm infertil etc because of the PCOS, so should they be treating that?
Its got to the point now that they wont even treat me for depression because of... my weight!!!
Anyways would be good to know where u are
Tx
Wends

[pam24]

Hi wends

Im in Lancashire, as i have only just been diagnosed with PCOS im not sure what to tell you, i dont even know what i am going to be treated for.

When i met my partner i was just under 12 stone and that was 7 yrs ago, i had my son 4 and a half years ago and since then i had been piling on the weight and last year i was nearly 16 stone, i have lost 3 stone since christmas (how i do not know as i have not been dieting). Last year my partner and i decided to try for a baby and i had not been using contraception for about 3 yrs so i wondered if anything was wrong, the doctor did blood tests and found out i was not ovulating, my progesterone level was at about 14???? . We were going to look into it further and due to other reasons we didnt, until this year my period was late by 3 weeks and i thought i might have been pregnant. As it turns out i wasnt and was sent for a scan where it was discovered i had polycystic ovaries. The rest you know (above posts).

Lots of ppl have said that losing weight will help you concieve and ease some symptoms so i assume it does work, though is not an easy task. Are you taking anything to lose weight? Can you not find another doctor who specialises in this area? All i know is that my GP has said they are there to treat the symptoms i.e Infertility, weight gain, excess hair growth and so on, i know that i am lucky and have a fantastic GP. Have you been given anything of your own GP to lose weight? I wish i could help you as i dont know what else to say. i wish you luck in losing weight and ttc.

Pam

P.S. I hope this makes sense

[wendsUK]

Hiya,
I've done loads to loose weight, slimming world, WW, Slim fast, Atkins, South beach and nothing seems to work.
Last year i was on Xenacol, loast 2 stone but then 3 went back on while i was still on it.
Me endo aint very good wont treat my infertility till i loose weight but what am i sposed to do to loose it when nothing works?!
So i am now going to see a surgeon about having stomach surgery (banding, bypass, etc) and see what they say.
I'm in London, And endo is at Guys, but i work at UCLH and am trying to get refered to the Reproductive medicine here to try for a baby.

[blondie37]

Hi

I was diagnosed at 18 now 37 so if anyone wants to know anything I'll do my best to help...I wont say I know it all but I think having had it most of my adult life Im pretty up on it all.

Regards.

[blondie37]

Hi

I was diagnosed at 18 now 37 so if anyone wants to know anything I'll do my best to help...I wont say I know it all but I think having had it most of my adult life Im pretty up on it all.

Regards.

[pam24]

Hi blondie,

Thanks for replying, i have just recieved my second appointment fot the endo, (last one was consultaion and blood tests) what do i need to ask? Should i get a copy of my blood test results so i can post them on here and ask advice? To be honest i really dont know what to do, some days i feel good and have a really positive outlook on things and then others i just feel down and depressed about it. The worst thing i suppose is not knowing what i should be doing or need to be doing. I cant be normal lol


Any advice would be appreciated


Pam

[blondie37]

I must admit Ive never seen an endo. I dont see the point I just stick with my gyne because scans and operations and histology confirm I have cysts on my ovaries.

I have an ovarian wedge resection which only gives relief for about the year...the same is true of the drilling as well.

I guess it all depends on whether you want to conceive or not.

My dilema is whether to have the ovaries and womb removed or hope and pray i have an early menopause.

Do you see a gyne?

[zee]

You are really lucky to be sent to an Endo. i was kindof diagnosed when I was living in Uk, but my doc said i was 'essentially normal' . i insisted on seeing a gyn (i had no idea what PCOS was ..no clue whatsoever) and my doc never said i should be seeing an endo and not a gyn.

I waited for 3 months for my gyn appointment (i am sure you are not surprised) and the gyn says to me.. lose weight and come back to me when you want to get pregnant!

I was never overweight, slightly maybe..but never too much (i wore UK size 10 clothes.. how coule i be fat?) but anyways.. i tried and tried to lose weight without any luck..

meanwhile I moved to US due to hubby's job , got a proper diagnosis and treatment and now I am pregnant. and I am also clear about the long term management direction I want to pursue.

What has helped me through all this was 'EDUCATING MYSELF' read as much as you can. dont be shy of asking even if you feel your questions are silly... ask..it is important . Knowledge is power. Read as much as you can about PCOS, about metformin, about low carb diet, IR diet, about everything under the sun! Go with a list of questions when you see the endo.

I wish I had known these things earlier, the doctors would not have put me through all these things (I am extremely bitter about the NHS, you can tell cant you ) Sorry about boring you with my story!


Good Luck.

P.S: there used to be a whole list of abbreviations , i hope it is still there..it was useful .... look in the Newbies section.

[bloo]

Originally posted by pam24
Should i get a copy of my blood test results so i can post them on here and ask advice?

hi pam,

do get a copy of your results as gyns and endos often do not know how to interpret them properly. kat has posted some links on the research pages as to what is normal for a cyster. if your endo really has experience with pcos, congrats

feel free to post your results as soon as you have them.

bye,
pam (yes!)

[blondie37]

I think the key is find a sympathetic endo or gyne. Mine never harps on about my weight as he knows its the pcos.

I train 3 times a week in martial arts and also swim so am getting regular exercise and I try to eat sensibly.

If you're not happy with your consultant ask around in your area about sympathetic ones.

I live in Milton Keynes and mine is Mr B-Lynch and he is brill!

Hope the above helps.

[bloo]

unfortunately, there seem to be about 3 or 4 endos in germany who are experts in germany, noone in may area within a 2 hour drive!

meformin for example is not yet accepted as the standard treatment (studies still going on) out here, so i´m glad i can depend on the help of you guys at the forum.

so finding an endo is virtually impossible for me.

[pam24]

Hi

I got my results from last year of the doctor this morning, he dosent have my new ones yet. i have put them in a separate post (sorry) if any one can explain what these mean that would be great, if i understand these results it will make it easier to understand my new ones (i hope lol). My doctor is also testing me for type 2 diabetes and IR, i read up about it and asked him to do it. I just thank god he dosent think i am some kind of hypochondriact lol . If my doctor can get the results and sort that bit out whilst in between endo appointments (2 months waiting list) i am hopful things will move along a little faster. I am also going to see the endo next week and i am going to ask him for metformin and clomid, it cant hurt to ask. Thankyou for all your support and i hope that you all get the treatment you need.

Wishing you all luck
Thankyou
Pam.........