New Kid and confused

powie · 01-06-2006, 03:20 PM

Firstly a big hello to everyone and thank goodness you're all here!

Okay I have this worry......

I have never heard of this condition until i saw a television programme on adult acne, the doctor then went on to say "Always rule out PCOS before anything else" Okay so I get onto Google thinking 'what the hell is this about?' and then that sinkking feeling set in as I read on.

I have a permanent pregnant tummy
Acne (which refuses to be treated by anti biotics and Oxyl creams)
Facial and body hair, not drastic but upsetting to me
My nails are splitting and I look generally unhealthy
Period like pains
No matter how hard I diet and exercise the weight keeps on piling on - I am naturally underweight, so this is quite a shock to me

So do I have PCOS I ask myself?

There are a couple of things I have to take into consideration

I have had 4 laparoscopies and one laparotomy to remove ovarian cysts, the last one was about 15 years ago
I am extremely fertile and have 4 children (I feel for you guys who are having trouble *hugs and bestest vibes to you all*)
I was however sterilised due to being so fertile

Last but not least, I am undergoing treatment at the moment which basically involves an implant which forces menopause, I therefore take HRT to counteer attack any hormone loss, this is because my Gyne wanted to know if I was suffering PMS before performing a hysterectomy (which goes ahead around April 2006) - there is also the issue of delapitating painful periods, suicidal thoughts and depression, plus the carnage each month that comes with the period, ok this has been really successful, I don't have periods, depression or mood swings, happy days, but is it really? What if I have PCOS and have been totally misdiagnosed? I had to force my doctor to take my blood pressure, I have never had a smear (apart from the normal 3 yearly ones) a pelvic examination, blood test or scan.
I have to see mny Gyne for a pre op assessment in March 06 and I really think he should look at whether I am suffering from this.

I guess my real question here is, if I am, will the hysterectomy get rid of it anyway (he is taking the ovaries too) so no worries or will I still have the problems I am experiencing now? I have read up as much as I can today and believe my symptoms pretty much cover PCOS but I am still in total confusion as to what causes it and whether I should be seeing my Gyne about it

And why has my doctor never once ever thought this might be the cause of my problems? I was diagnosed with rosacea a few years back and have trotted aong thinking I just have to live with it !!! I might not have had rosacea all this time & the gyne I saw 8 years ago who told me to go away and lose weight (I was 2 stone underweight at the time) has severely let me down if this is the case! Now I'm getting angry so.....

Sorry for the ultra long post I'll be able to keep them short now the rants over, and please, your thoughts as fellow sufferers...I could cry, but I won't because although I feel cheated after years of complaining to Gyne's and GP's I have read some of your stories and I have at least got my family before discovering this

Please someone get back to me and tell me
a) What you think and
b) What do I do?

Love to all

Frenetic · 01-06-2006, 03:41 PM

It definitely sounds like PCOS could be your problem. I'm no doctor though. I would suggest that you do get checked out for it though.
If that is the problem, I don't believe a hysterectomy would solve all the problems. It is my understanding that the underlying problem is insulin resistance.
Definitely get it checked out. I would hate for you to go through all of that and still have symptoms.

powie · 01-06-2006, 03:45 PM

Thanks for the reply

lucky I took a sicky off work today otherwose I'd never have seen that programme!

I will discuss this with my gynecologist on March 13th, hears hoping someone will actually listen for the 1st time in my 12 years of complaining, and actually do some tests! Can you believe no one has done any tests even though I am going in for a full hysterectomy?

I will update you all and let this be a message to anyone who has worries to keep on pushing for testing!

Frenetic · 01-06-2006, 04:39 PM

Best of luck to you. I'll say a prayer for ya!

It's amazing how many doctors don't really know about this stuff. I've had all the classic symptoms for a long time. The first doctor I went to just put me on the pill to straighten out my cycle and didn't say anything about the rest. When I had some serious non-stop bleeding issues and went to have them checked out, I was blessed that the doctor I was seeing then (and he's only a general practitioner) also had his main studies in women's health. He believed that PCOS was my problem and referred me to an GYN that was wonderful. He immediately did the bloodwork and ultrasounds and started me on bcps (doubled-up) to stop the bleeding and metformin (which I could not take).
Since then, I found this site and it has been great for me. You can find a lot of natural ways to deal with the symptoms too. I wish you the best!

powie · 01-06-2006, 05:39 PM

Thanks for the good wishes, I'm glad you had someone who got onto your case straight away, I've just been doing some more reading only to find that post menapausal women don't necessarily get relieved of the symptoms :o(

I am going to have to be very strong in insisting they check this out!

Unfortunately, here in the UK nearly everything goes undiagnosed - hardly surprising when a patient is permitted 3 minutes exactly with his/her GP! I am feeling pretty robbed of a proper diagnosis right now, especially as I have been to my GP every month for all these years insisting it's my body and I know something's not quite right and again when I was reffered to the Gyne who told me to go away without checking anything out...I am perplexed and angry that the Gyne I am under at the moment hasn't done any tests either, just went ahead and prescribed this treatment (which is bliss) and now says 'lets whip it all out' why why why hasn't he even thought about the possibility of PCOS, I do have to have the hysterectomy regardless, it's what I want anyway, but that's hardly the point!

I hope you feel well soon and your treatment continues to go well for you :o)

isenephthys · 01-08-2006, 08:49 AM

powie, *hugs* i am so sorry to hear how things are going for you. i didn't realize how bad the medical system was in the u.k. i am shocked that they want you to go into surgery without even doing a baseline assessment and routine labwork! that is unsafe and ludicrous. that is really a shame.

you just keep doing your research; have it in hand with you when you go to your doctor's visits! if they don't want to listen to you, then show them the medical articles that back up your concerns. be your own advocate.

keep us updated and if you have any questions, please feel free to ask.

powie · 01-08-2006, 04:27 PM

Quote:

Originally Posted by isenephthys

powie, *hugs* i am so sorry to hear how things are going for you. i didn't realize how bad the medical system was in the u.k. i am shocked that they want you to go into surgery without even doing a baseline assessment and routine labwork! that is unsafe and ludicrous. that is really a shame.

you just keep doing your research; have it in hand with you when you go to your doctor's visits! if they don't want to listen to you, then show them the medical articles that back up your concerns. be your own advocate.

keep us updated and if you have any questions, please feel free to ask.

I do have a couple of things I'm not understanding

I am not in natural menopause as stated above, this is forced through implants, in order to prepare the womb for surgery, it makes it weak and easier to remove or something, so therefore I have HRT (Livial) to prevent hot flushes and other side effects

when i researched what exactrly it was I was taking, it said my gyn would take blood tests, scans, weigh and measure me, to make sure I don't have any forms of cancer for starters (Livial speeds up certain cancers) and to check I'm generally healthy, none of this happened, I questioned it when I went to my own GP and he huffed at me when I insisted he at least take my blood pressure, which was normal, however I jumped on the scales (I am very obsessive about my weight) and it didn't seem to concern him I had whacked on alot of weight in a very short amount of time, I also discussed my concerns with the gyne when I went for a 3 month check up to decide whether the implants are doing the trick & go ahead with surgery) They have done the trick, I genuinely feel so much better for not having crippling periods, no moods swings and violent outbursts, and the depression, so we know surgery will definitely get rid of those symptoms, but they told me HRT makes you gain weight around the middle, well no, sorry that is a falicy, I've researched this part of it until my eyes have nearly dropped out, it does not!

I have had the letter telling me to go back in March for pre op assessment and to expect to be there for at least 2-3 hours, and then I'll go on to discuss when i want to go in for surgery (thats one good thing, you can choose unles it's an emergency procedure) now do you think this means they'll be taken blood tests, doing scans etc then? I'm really concerned that they just went ahead with this treatment without checking out anything to make sure it was ok to treat me with it! I am showing all signs of PCOS - surely any gyne would recognise this? Especialy after I've been complaining for such a long time about 'pregnant belly' and acne, surely those 2 symptoms alone would ring some alarm bells somewhere? I seem to be the only person who has sat bolt upright when hearing of this condition.

Saying this I have stopped taking Livial as from today, after doing more research (thanks to this forum) I have discovered it causes acne, male hair patterns and a deep voice, so now I'm thinking is it the Livial or is it PCOS ?? Or both?

I'm now more confused than I was at anytime before, I will still get tested for it, I have to rule it out (or find out I have it) but I know my Doctor is going to start sighing and huffing and puffing at me over it, I'mn sure he thinks I like being ill, I don't, I'm just a normal person who raises her kids and goes to work, I've just felt something's not quite right for a lot of years now and want to get to the bottom of it, I also don't want to risk going blind if I have an insulin resistance problem! So many things can be prevented if doctors would just listen to their patients!

Another question? I had pregnant belly about 4 years ago, again no matter what i did, i could not shift that weight! I then lost loads and loads of weight and was frankly far too thin, I remained this way for a couple of years before returning to the massive weight gain again, has anyone at all, had on/off periods of this vast weight gain and then a massive weight loss??? The same applies to my acne as well, I seem to get that in periods of attacks that go away for years and then come back again, but since I been on this treatment, it seems to have attacked big time and I really can't get shot of either problem, I am on a low carb diet as from today though and hopefully will see some results from not taking the HRT, maybe that'll answer my own questions but I'd seriously like to hear from anyone who seemed to be well and fit with no symptoms only to have them turn up again, go away again, turn up again (I put the weight gain down to being in an abusive relationship as I lost roughly 2 stone once I got rid of him) but I can't say that now because I am not in one at all and have exactly the same thing returning....

your thoughts

isenephthys · 01-08-2006, 09:39 PM

wow... *hugs* i'm sorry you're going through a lot and your doctors won't listen to you. that is so frustrating!

generally, at a pre-op assessment they will do some routine bloodwork, vital-signs and depending on your age, an ekg. if you are concerned or want to have further labs drawn, call the office and ask them specifically what will be done at the pre-op visit. it certainly sounds like you *might* have pcos, but without seeing your tests, etc. i couldn't say for sure. if the doctors keep giving you trouble, you could always say that you are concerned about developing [i]diabetes[i]and would like to be tested for that. that would at least get you the glucose tolerance test and a bit more of a work-up than you've had.

i'm not familiar with livial; is it just a form of hrt? increased androgens cause the facial hair, balding, etc. associated with pcos.

powie · 01-09-2006, 10:07 PM

Hi thanks for the sympathy (I am feeling a bit sorry for myself) :o(

Livial is HRT yes, I haven't taken it for 2 days now and already feel better, the acne has started clearing, I'm not sure if that is due to this awful cream I use which has left me with a leather skin or whether it's due to stopping HRT, my particular HRT is strong in prostregen so it could be the cause, but I don't know about the pregnant belly thing.....the acne and hair groweth started when I started the HRT so i am pretty sure it's that, but I'm seeing my doctor Thursday & will be insisting I get tested for PCOS, I have to rule it out or I'll worry for ever.

I know I'm not insulin intolerant, I had a kit test today that gave me a reading of 5.1 so it's low if anything, but if I do have PCOS I want to make sure it stays that way - I'm just dreading telling my unsympathetic, idiot Doctor that I want testing for it that's all.

TopekaTeri · 01-11-2006, 06:29 AM

Yes do insist on getting tested for pcos & let us know what the OB says and all of that. *hugs and feel better*

powie · 01-12-2006, 11:18 PM

Quote:

Originally Posted by TopekaTeri

Yes do insist on getting tested for pcos & let us know what the OB says and all of that. *hugs and feel better*

Bad news and good news, I said somwhere else my doctor wouldn't even know what PCOS is let alone the huffing and puffing that would go on with wanting to be tested

Well i went tonight tada, he knew exactly what it is!

Her refuses point blank to send me for testing, saying if I have a hysterectony I cant possibly have PCOS after that, erm yes I can, we argued this for a good half an hour, (hey I AM the expert opn thjis now, I've read and taken in far more on the subject than he'll ever know in a lifetime!) He is absolutely dead set that once everything's taken away i cannot possibly Have PCOS, I know this not to be true, so i've ended up in tears, have put on half a stone in 3 weeks although on a low carb and calorie diet and he still won't listen

I have a 16 year old daughter, i have to know if I'm likely to be passing anything on to her, but he dismissed that as rubbish too

Anyway tyhe good news is, I have my post operative exam in March, I will insist they test me for PCOS during the hystertectomy, it's not really me I'm worried about, i have to make my daughter aware that if anything at all isnt right in her mind then she must be tested, i have talked to her about this and she will be keeping an eye on her self - but that's not the point, if I have it, the chances are she will have it, as did my mother, so my doctor is on my hate list right now - tosser

CathyWood · 01-14-2006, 02:26 AM

Hi Welcome to SC. GLad you are here.

Cholet · 01-14-2006, 05:19 AM

Hey Powie. When I lived in England (2004 I moved the the states) I begged my doctor for a hysterectomy. She told me that giving me a full hysterectomy would get rid of the actual PCOs but she could not garentee that it would get rid of all of the symptoms. She said that facial and body hair would be lessened and I would find it easier to lose weight, but she could not garentee it would solve all the PCOS related symptoms.

Then she refused to give me a hysterectomy anyway because I was only 21 at the time.

jax009 · 01-14-2006, 04:56 PM

If you have a hysterectomy, you could be setting yourself up for a whole other set of problems. My mother had one, and she's been taking hormone replacement medicine for years. Also, you won't necessarily get rid of all your PCOS symptoms.

TN Butterfly · 01-14-2006, 09:29 PM

Hi!

I love the "accent" in your posts! When I read your posts, I found myself reading them in my head with what I figured your accent would be.

Okay, so now that I sounds totally crazy (haha)...I wanted to add that I agree with everyone else. The surgery will probably not get rid of all your symptoms if you do have PCOS. Cysts is just one of the problems.
I feel for you for the problems you've had with a doc who doesn't seem to wanna help you like he should. Been there, done that. I have spoke to 1 family physician, 2 physician's assistance, and 1 gyno about PCOS and all they say is "Nah...you don't look PCOS." Grrr!

Very frusterating!

Anyway, I hope you get some answers. Not the "easy" answers docs wanna give...but REAL anwers!