Gynaecology - PCOS *Long Post Warning* !

[emmapetty]

Well, what an eventful morning! I hardly slept a wink thinking about my gynaecology appointment today - only to get in the car and re-read the letter (yep, left to last min, same as everything else) and my appointment is Thursday, not today :sigh:

I haven't been to gynaecology for a loooong time. I haven't had much luck with Dr's/Consultants in the past.

From the top:

When I was 15 I was diagnosed with PCOS. After battling my my GP and being told "You're only young, your periods will soon start" Dr would say - "They have started, but they have stopped" I would say. Eventually, I was referred to the hospital, had the scans and blood tests to be told I had PCOS and my Androgen levels were very high. The Dr prescribed me 'Dianete' pills (taken the same as contraceptive pill)

I had monthly periods, my acne and hair growth settled down. BONUS!

Then I moved to Portsmouth, some 200 miles away...

I signed to a Dr surgery and went for my usual perscription. The Dr was very firm, questioning why I took the dianete, and took me off them saying that they are now off the market (which they are now because I looked into it) and he referred me to the hospital in Portsmouth as he was unsure what medication to replace the dianete with.

I went to the hospital and saw the consultant, who abruptly told me "I can't do anything for you until you loose 'all that' weight " something that stuck with me for a long time. So off I went home in teaars with no new tablets, but knowing that I had to loose 'all that' weight. :cry::cry::cry:

2 years later I moved to Bristol (home sweet home) and have the best GP I have ever had. She was the lady who told me about CD

Again, she is reluctant to prescribe anything to me but referred my to the hospital gynaecology department.

Me and HB are hoping to start 'trying' for our first addition to make a family D !) and obviously we want to get this sorted.

Since loosing weight my periods have been showing, instead of being non existent, so I know that I am ovulating. Even if they are light and last 2 days (actually my last period was horrendous, heavy and painful) :cry:

My Mum told me that I should be asking lots of questions - yet she failed to come up with any ideas of what I should be asking - and got quite cross with me on the phone "what a waste of the consultants time Emma, you haven't got a bl**dy clue what to ask, I should be coming with you but you wont admit it"

Now when I first told my Mum I was going to hopefully get some 'answers' (wrong choice of words now methinks) from the gynaecologist, she was insistent she was to come with me - because she was the one who initially took me to the Dr's with the problems I was having. It took me a long time to convince her that me and Simon (HB) would like to do this together 'alone', as we see it as quite a private thing and personal to just me and him.

Me and Simon decided to tell both our 'Parents' (which I regret now ) that once I have lost my weight we plan to try for a baby. Since then my Mum has gone absolutely crazy, telling all my family that she is going to be a Grandma soon. she has even bought baby clothes. My Mum actually suffers from mental health issues, and gets very obsessive about things at times, but can also 'turn' and be very nasty (she's a cross between Jean from Eastenders and Cruella De Ville) I find it hard at the best of times to cope with her. I stopped telling her things, and she became extremely jealous and angry, treated me terribly (nearly ruined my wedding by 'cancelling' my chosen Bridesmaid dresses, because she didn't like them) and I just couldn't cope anymore, so decided to have a 'heart to heart' and told her I wouldn't keep things from her anymore. Hence why we told her about our 'baby plan'.

But that isn't my worry. (Sorry I waffled on about my Mum!) Will I be wasting the gynaecologist's time? I basically just want to say, look I've lost 5 stone since I last saw a gynaecologist and I'm still planning to loose more. I want children - help me" (you get the jist)... Should I write questions down to take with me?

Confused, stressed and anxious, I hope someone will be able to help

Big Hugs,

Em x x x

 

[curlywurly1234]

Emma hon!!!!
Relax..... take a deep breath......
I can only say to you I could have written what you have written.. I have been there hon...
Just briefly..
At the age of 15 went to gynae horrific periods.. put on the pill etc....(he knew I had pcos but never told me)........
Its only when after a year of being married came of pill and it all went from there......
I so understand how you are feeling hon, its hard to know what to ask etc but dont worry hon..... they will do tests and things and get to the bottom of it.. I often only had periods once every 6 months some longer..... got given chlomid, and something else which cant remember the name of etc..
Im not sure if you know this but just because you have a period doesnt mean that you ovulate.. just for your info hon.....
Im not going to go into so much detail here hon but if you want to ask me anything just pm me!! Ive been there hon..
Try not to stress to much as they are clued up in what they are doing and will ask you all the questions.
Take care hon and chin up ..
xxxx

 

[charley24]

Oh Emma, I am sorry you have had problems with your Mum (I have many issues with mine but I would bore you to tears) I do agree this is private with you and HB and it is something you should be doing together.

My sister has PCOS and luckily had her son, then nothing, she took clomid to be able to concieve. She also suffers from the hair growth and weighs about 16 stone and they prescribed it for her.

I would just write down the basic questions you want to ask, perhaps find a forum where others have posted what they should say, I don't know much about PCOS but am sure there will be a support forum online.

Just wanted to wish you tons of luck and you have come a long long way hun, 5 stone is AMAZING and I am sure the consultant will see that you are making a huge effort for this.

Love and Hugs Vx

 

[emmapetty]

Thanks for your support girls

Big Hugs x x x

 

[RuthG]

Emma, you have done amazingly well to lose 5 stone, that is such a fabulous acheivement.

Question I'd be asking are:

What tests can I have now to see how fertile I am?
What tests can your husband have - ususally a sperm ananlysis
What is there usual route of treatment? Eg Clomid, clomid and intrauterine insemination, etc
What are the time scales/waiting lists before I can have these treatments?
What BMI do I need to be before I can commence treatment?
What if clomid doesn't work?
Is there any additional support/councelling available whilst going through treatment?

Thats all I can think of for the moment that is appropriate to where you are in your treatment journey. I'm starting clomid in august, so we'll be on similar timescales, although I don't have PCOS, I just don't release many eggs. In fact I only had my first ever positive confirmation of ovulation last week, so currently waiting to see if I'm pregnant or not.....

It is a really hard journey to be on, as I'm sure you're well aware. You need the unconditional support of your family, and not the 'expectation' - your mum seems as if she's going to make it all about herself. Is it not possible to say the consultant wants you to wat a while - then you haven't got the 'expectation' pressure too.



For clomid the usual BMI requirement is 35 or below, so you havent got that much more to go, just under 2 stone, which you can do in 2 months. The clinic will probably want you to come back in 6 months, ask if you can have your appointment in 3 months time, it'll keep your focus (and stop the nibbling ) You will have got to below the required BMI for then, and you never know, you might start ovulating yourself, I know the weight loss has helped me.

Sorry for the ramble, feel free to PM if you want any more info.

Where are you? What clinic are you going to?


Baby Talk - wedding planning discussion forums is a fab forum for fertility and pregnancy.

 

[towergilly]

hey em

breathe my mum sounds very much like yours!
i've been diagnosed with pcos and kinda know what your going through - have you been on the verity site there's loads of info what you need to know are your options i found metformin helped me i was prescribed this some years ago it just sorts out (well ease's) the insulin resistance problem giving you a more level playing field to lose the weight i then went on to lose the weight and conceive unfortunatly i miscarried twice( but i was still rather -well very heavy) in a strange way it was a good experience as at least i knew i could conceive, any way back to my point - you and hb can do this yourself - its a very personal journey your on so pop over to verity they'll have loads of info and wise words
do some research on your options its your firsr appoint anyhow they'll probably just send you of for a thousand tests dont worry and good luck
much love

 

[emmapetty]

Thank you towergilly and RuthG

Ruth - I'm in Bristol and going to a gynaecology department within one of the hospitals. Your questions were very useful, thank you hun. I have wrote a few down.

I will look on the verity site and the Baby Talk forum too.

Thanks so much for your help x x x x

 

[RuthG]

You need to make sure you push for a fertility rather that a gynae consultant too xx

 

[claira07]

hi emma are you going to southmead if so who are you seeing, i saw dr wardal who is very good, patronising but very good, he put me on zynical and metformin, the zinecol didnt help, but i did loose some weight, he likes to see that youve made an effort, i was on metformin, then had my gall bladder out and pregnant, after 10years of trying, good luck luv xxx

 

[curlywurly1234]

Emma, you have done amazingly well to lose 5 stone, that is such a fabulous acheivement.

Question I'd be asking are:

What tests can I have now to see how fertile I am?
What tests can your husband have - ususally a sperm ananlysis
What is there usual route of treatment? Eg Clomid, clomid and intrauterine insemination, etc
What are the time scales/waiting lists before I can have these treatments?
What BMI do I need to be before I can commence treatment?
What if clomid doesn't work?
Is there any additional support/councelling available whilst going through treatment?

Thats all I can think of for the moment that is appropriate to where you are in your treatment journey. I'm starting clomid in august, so we'll be on similar timescales, although I don't have PCOS, I just don't release many eggs. In fact I only had my first ever positive confirmation of ovulation last week, so currently waiting to see if I'm pregnant or not.....

It is a really hard journey to be on, as I'm sure you're well aware. You need the unconditional support of your family, and not the 'expectation' - your mum seems as if she's going to make it all about herself. Is it not possible to say the consultant wants you to wat a while - then you haven't got the 'expectation' pressure too.



For clomid the usual BMI requirement is 35 or below, so you havent got that much more to go, just under 2 stone, which you can do in 2 months. The clinic will probably want you to come back in 6 months, ask if you can have your appointment in 3 months time, it'll keep your focus (and stop the nibbling ) You will have got to below the required BMI for then, and you never know, you might start ovulating yourself, I know the weight loss has helped me.

Sorry for the ramble, feel free to PM if you want any more info.

Where are you? What clinic are you going to?

Ruth,
Hon well put, good questions.......
Just wanted to wish you all the best too hon and I have everything crossed for you both and any others that have been ttc..
I have been there so feel and understand what you are going through.
xxxx

 

[emmapetty]

hi emma are you going to southmead if so who are you seeing, i saw dr wardal who is very good, patronising but very good, he put me on zynical and metformin, the zinecol didnt help, but i did loose some weight, he likes to see that youve made an effort, i was on metformin, then had my gall bladder out and pregnant, after 10years of trying, good luck luv xxx

Nope, i'm at St. Michael's Hospital in town. I'm seeing Mr Mills. I was a bit baffled he's not a Dr, but my friend said he's probably a surgeon? I might phone and ask actually.

 

[RuthG]

Surgeons are always 'Mr/miss/mrs' medical doctors are 'Dr' x

 

[claira07]

if its mr martin mills hes the lead dr x

 

[claira07]

my sisters ex mother in law is a midwife there, they are good, just talk with him, about the importance of having a baby and that even whilst battling pcos, you have lost 5st and intend to loose more. they will help you if they see you are helping yourself xxx

 

[emmapetty]

I'm wondering if it is worth taking my CDC card with me to show I am loosing weight.

Yes it is Mr Martin Mills! OOh i'm seeing the lead Dr, how wonderful Makes me feel better that I'll get the right care! I was worried it'd be a student ! Seeing my downstairs would put them off for life! LOL

Hugs x x x

 

[claira07]

bless, it wouldnt hurt to take it but they will have your medical history if your dr has weighed you, good luck, please let us know ow you get on, i'll be thinking of you xxx

 

[Nicki-M]

Hi Emma,
My name is Nicki and I was 13 when I was diagnosed with PCOS and that was in 1983 and not a lot was known about it back then...ie; putting on weight, hairy chin etc.
The only thing they told me back then was that I might have problems conceiving.
Well losing the weight will definitely help you on the conceiving front..as your hormones are likely to be more balanced and your insulin levels more under control...providing you are eating healthily or SSing.
You do need to get your Gynaecologist to refer you to a fertility specialist as your gyny will only deal with the whys and wherefores of your gyny problem and not your fertility problem..make sure you are firm on this point and don't leave until you have the promise of a referral!!
I cannot believe you have not been offered Metformin...it really is supposed to be a PCOS wonder drug and a large percentage of woman with PCOS have successfully conceived using this drug alone and not needed any further intervention with fertility drugs. Your gyny can prescribe this for you. I am showing my age now as I was one of the first woman in this country to trial this drug for PCOS I was a guinea pig for it way back when. It is a drug used for non insulin dependent diabetics and as such was not recognised as a PCOS drug, so I had to sign all sorts of disclaimers to take it and be regularly monitored. Unfortunately, I did not stay on it for long as this drug is not for everyone...it caused me a lot of stomach upset and basically I spent most of my time on the big white telephone.
My pcos is quite bad and I never used to have periods at all...or maybe 1 every year or 6 months. I was told by my fertility clinic in 1992 to go away and lose 3 stone and then they would perform some sort of disection of my ovaries...I was not too sure about this treatment, but went away anyway to lose the weight and consider my options..I thought the treatment offered was a bit drastic, but was willing to try anything (they apparently do not offer this treatment too often now as it is so drastic). Anyway to cut a long story short while I was away considering my options and trying to lose the 3 stone...I became a little unwell and so pushed the treatment to the back of my mind only to find out after about 3 months of seeing the fertility clinic that I was actually 10 weeks pregnant (naturally conceived). My miracle baby is now a 16 year old hormone ravaged monster!!!
I hasten to add I have never used contraception and the miracle was never repeated and I still only have one child, but, look on it as a blessing as obviously some people don't even get the luck or opportunity to have one. I would have loved to have baby number two and although I am knocking on forty's door, I still live in hope of holding another of lifes miracles in my arms again.
I am now unfortunately, am having the reverse problem to my youth now where I can't get my periods to stop and am often confined to the house due the severity of the problem...I have experienced uncontrolled bleeding constantly for the last 5 years and am now under the Gyny to get tablets to make the damn thing stop (ironic I know)!!! Anyway I use provera for that and it is great and worked well and stopped the dreaded thing for 6 months until I started this SSing lark with the CD..now I sem to be back to the constant bleeding thing..I have been on CD SS for 6 weeks now and have been bleeding for 5 of them...back to the Docs I suppose to get some more provera to give me a break.
I like you am hoping if I can get down to as more normal weight range and healthy BMI, I too will get my fertility restored and get another chance...time clock is ticking now and what will be will be for me! I will probably end up with a menopause baby..nowing my luck!
Anyway that is enough rambling from me....remember don't ever give up..your body is a marvellous thing and can shock us at times, but try not to concentrate too much on making a baby, just go with the flow and enjoy trying...as that is supposed to be fun and your body won't help you if you are tense and stressed. Easier said than done I know...I have been there, but I must add when I did get pregnant it was not the best time for us we were in financial difficulty had nowhere to live and were living with my parents and were arguing constantly...obviously the other distractions helped the situation and the last thing we needed really was a baby in the mix....but what a great feeling knowing your body has done exactly what nature intended it too.
I really, really, wish you luck and happiness and hope your dream of a family will come true..but please don't stop living your life too.
Don't forget to be firm with the consultant and tell him what you want to happen...after all it is your body and your life.
If your appointment is for a Mr then that means the consultant who's clinic it is...this does not mean neccessarily that you will see him, but you will see one of his team..sometimes you get lucky and see the actual consultant...but don't bank on it..a lot of the time the consultant (Mr) does not even attend his own clinic, but don't get disheartened by this you will be in safe hands.
Remember, remember, remember to ask to be referred to a fertility clinic that needs to happen to get the ball rolling....good luck and keep me updated.

"Shoot for the moon and you may land among the stars"

 

[Nicki-M]

Emma,
Me again....just had a thought and might post a thread for us PCOS girls as any sufferer of PCOS knows losing weight for us is extremely hard as not all of our weight gain is by eating the wrong stuff, but due to hormone imbalance and Insulin resistance and makes getting the weight off extremely difficult, I was quite curious to see how steady or not the weight comes off of fellow PCOSers, for instance I was told that the first week on SS I would have a huge weight loss and was told to expect anything from 8 - 11 lb and possibly more...I only lost 5 3/4 lb the first week and was a bit disappointed tbh. I know any weight loss is good and not to be sniffed at..but when you see some people losing 16 and 17 lb in the first week it makes you question why? I have been losing a steady 4 or 5 lb per week and I haven't plateaued yet (fingers crossed). Just thought it would be interesting to have our own thread what do you think????

 

[claira07]

that sounds good xx

 

[curlywurly1234]

Hey Nicki.......
I read your post with lots of interest........ thanks for sharing your story.... I to suffer from PCOS..... I did take metformin way back, lots of tummy problems to...... I am so pleased that you fell pregnant naturally and I really hope you have another miracle baby very soon.....
I was one of those that did go on to have IVF/ICSI treatment and am so blessed to now have two boys one that came along straight after naturally.. 13 months apart......
Thanks so much again for sharing its good to here others stories....especially when you are all in the same boat..

My first wi I lost 8 1/2 pounds but we are all different hon and if you dont lose it first week it comes off the next week...
5 3/4 is still a great loss in one week..

Good luck on your journey xxxx