# Diagnosed with PCOS and have been referred to Queen Mary's ACU - any advice??



## lillylojo (Feb 18, 2010)

Hi ladies,

I hope you don’t mind me dropping in, this is the first time I’ve sent a message to anyone and I’m not really sure if I’m going about it the right way.


I’ve just turned 30, myself and my partner of 9 years have been trying for a baby for well over a year.  Back in September 09 I was diagnosed with PCOS, thankfully my partner’s sperm count is apparently ‘excellent’.  

I don’t seem to suffer with the typical symptoms of PCOS however my GP prescribed Metformin to help me ovulate as since coming off the pill I’ve not had a period so clearly am not ovulating. I suffered really badly with side effects and was taken off after a few months.  My testosterone levels are twice the ‘normal’ levels but my female sex hormone is apparently ok.  My GP put me back on slow release Metformin to help with my skin in January 2010 but told me that it wouldn’t help me ovulate. 

Last year I was referred to Queen Mary’s assisted conception unit in London.  I have had my first appointment and am scheduled to have a transvaginal ultra sound and a HSG examination in two weeks.  My appointment to see the Doctor has been scheduled for end of May 2010.

Basically I’m looking for some advice from others who can understand the confusion I feel.  

I’m sure the Doctor will prescribe me Clomid when I go to my appointment in May.  I’m not sure what to expect as far as side effects, time scale - how long will the doctor prescribe me clomid for before deciding it’s not working and prescribe me something else??  

My partner keeps telling me I’m getting ahead of myself but I can’t help worrying what will happen next.  

If the Clomid doesn’t work how long will it take before I’m moved to the next stage and then the next.  

How long is the waiting list for further treatment? 

I’m so worried that It’s going to take years so am thinking about going private? I know I’m only at the start of my journey but I can’t help being pessimistic as I don’t want to be hopeful and be let down .


----------



## Stalyvegas (Oct 14, 2007)

Hiya   

Im sure that someone will be along with lots of lovely links for you in a while, but thought I would say hello and blow you some bubbles.  I have PCOS and had a similar experience to you, however if you look at my sig you will see I have been incredibly lucky and have 2 little miracles.

I had a fair few months on metformin to help me lose weight (needed to drop about 2 stone) and hopefully help the ovulation, had a couple of TV ultrasounds to check things and also an HSG, I wasnt initially offered Clomid as was advised I should give the metformin time to work.  I was however offered it when I tried for my 2nd baby, though you will find that different doctors & PCT's will have differing advice - I was told I only get 6 rounds of clomid before they decide its not going to work for me, and I would need to look at different options.

My initial consultation & scan were done privately as it was an 18 week wait to see the consultant and then a 12 week wait for the scan, so I paid and was seen within a couple of weeks. However he advised that I needed to have a few months on the metformin before having the HSG and transferred me back to the NHS list so I didnt have to pay anything further.  

Good luck with your journey - im sure you will find lots of information and lovely people to support you on FF  
R
x


----------



## upsydaisy (May 9, 2009)

Hi  

Not sure if you mean Queen Mary's in Roehampton.  If you do that is where I was diagnosed and  treated for PCOS.  I think it is still an area that consultants tend to disagree on/not no much about, so is it any wonder we get confused!  I was put on metformin and luckily managed to avoid side effects (I was told to cut the tablets into tiny pieces and to start by just taking a crumb then a half etc until I got up to the full dose over a period of 4 weeks.  I had no periods for 2 years after coming off the pill it took a year on metformin for them to come back, then it took clomid to make me ovulate.  I had no side effects from this either (maybe I'm just lucky) When I moved to Brighton I was told that some of the top experts in PCOS work at Queen Mary's which was reassuring.  
Good luck with your appointment.  I would use the NHS as much as possible, you still have time on your side PCOS really sucks, especially the skin symptoms   
Upsy
xxx


----------



## Ceri. (Sep 6, 2004)

Lillylojo and welcome to Fertility Friends 

Big   for you hun. I'll leave you some links shortly which i hope you find useful, and also pop by into the QM thread. If this is where you are being referred then you might find it helpful to talk to the ladies here who are already undergoing treatment at that clinic, you could ask them questions and get a general feel of what is in store over the coming months  Here is the *QM chatter thread * ~ Click here
Please have a good look around the boards, feel free to post in any area, and make yourself at home. Fertility Friends is such a huge support. There are many who are on their TTC journey, and others who have been fortunate to have little ones with assistance. You will soon discover that our members are very encouraging of one another and offering advice or just simple hugs. There's a vast amount of information here for everyone, so start reading, posting and getting to know others. You will make some great friends too (add them to your buddy list in your profile!), lots of members often have meet ups locally too, for chats, coffee, shopping or even nights out! You can share conversations with one another freely, simply because we all understand each other. It's hard when family and friends don't fully comprehend what this journey entails and the emotions that go with it. That's where we come in!

Here are some links which you should find really useful at the moment&#8230;&#8230;

*What Every New Member Needs To Know (includes a list of common abbreviations) ~ *   CLICK HERE

*Peer Support (for asking fertility and treatment related questions of your fellow FFers) ~ * CLICK HERE

*FERTILITY GUIDES ~ *CLICK HERE

*Investigations & Immunology ~ *CLICK HERE

*PCOS ~ *CLICK HERE

*Questions for your first cycle consultation ~ (use the ones that apply) *CLICK HERE

*Clomid ~ *CLICK HERE

*A Rough Guide To IVF ~*   CLICK HERE

*IVF General ~ *CLICK HERE

While undergoing treatment, you might find it useful to join other ladies having treatment at the same time. The Cycle Buddies threads are just for that. You will find a thread, usually with a funny/inspiring name for this year's buddies. Just pop along to the appropriate month and say "Hi" when you are ready to start treatment.

*Cycle buddies ~ *CLICK HERE

*2WW, Ladies in Waiting ~ *CLICK HERE

There's also a place for the lads to chat too ... 
*The Mens Room ~ *CLICK HERE

Its not all just serious stuff here, you can also have a bit of fun or just gossip while you are on FF too so check out the general chit chat / jokes / hobbies area:

*Girl & Boy talk - Community & Fun Board ~ *CLICK HERE

You can also chat live in our excellent chat room. We have a newbie day in the chat room every Wednesday where you can meet one of our mods for support, meet other new members and get technical support with navigating the site and using all the functions available here.  CLICK HERE FOR INFO ON NEWBIE CHAT 

You can also "meet" and chat with people in your local area through the *Location boards*. This is especially useful to find people who may be using the same clinic and or in the same PCT area. It's a small world!

Wishing you lots of luck    and 
Keep in touch
Ceri xx

PS I have also sent you a pm (private message)


----------



## nicnacnoo (Jul 29, 2009)

Hello sweetie,

Welcome!!!  Thought I'd say hello as I too am nuder QMR.  I have PCOS also, bad sadly for me I also have Endo and severe MF (male factor), so will be requiring ICSI.
Try not to worry to much about NHS waiting, I'm not sure what PCT you are under, but once you have the initial appointment, the waits are not long at all, our treatment has been held up as I have to have another laperoscopy & hysteroscopy, and we are awaiting a decision on funding for some hormone treatment for my DH, otherwise we would be underway.

Say hello on the queen marys thread, the ladies on there are SO helpful and kind, you will find them a great support.  FF is my saviour, its such a comfort to come on here and find you are not the only person to have felt the rollercoaster of emotions we go through.

Feel free to PM me if you need to, for now, GOOD LUCK making your dreams come true xxx


----------



## lillylojo (Feb 18, 2010)

Thank you all SO much for your lovely messages - wow it's so overwhelming knowing others have taken the time to reply.  Thank you for your excellent advice and pointers... I am truly grateful x x x


----------



## Winegum (Jan 15, 2010)

Hi lillylojo

Didn't want to read and run - some of what you describe I am familiar with - especially the confusion, being pessimistic and looking ahead to the next stage  

I'll try an answer your questions from my experience, but remember, every clinic and every woman is different.  I haven't had PCOS diagnosed but I have got PCO type ovaries and no usual symptoms of PCOS, so I haven't been near Metformin, but I have been on Clomid for a long time, with no success.  

Just from reading this site, it really varies from clinic to clinic how long ladies are on Clomid for, the shortest being 3 months and the longest being 12 months, with most being 6 or 9.  Some clinics also monitor Clomid very closely, with scans and bloods every month, others (like mine) just did a 21 day progesterone blood test for the first two months to check ovulation is occuring and one TV ultrasound on day 12 or so of the first cycle to check for a follicle, then you go away and get on with it and hopefully get pg.  

Have you checked your PCT infertility treatment allowance on the NHS - due to your age, you may not get funded for anything other than clomid until you are a bit older, but do check as each PCT varies widely in their provision (bummer, I know).  Having said that, I would take the NHS as far as you can and save your pennies for any private treatment you may need later.  

Once I had finished my Clomid, I was referred to a fertility clinic for assisted conception.  I was referred at the end of April and got my first appt at the beginning of June, so I waited just over a month - then I had an HSG (where they check your tubes are clear) and an AMH blood test (where they check your ovarian reserve) and went back at the end of August for another apt to discuss the results of the tests and which treatment would be next.  (If you get to this stage, ask for your HSG and your AMH and any other tests to be done in the last couple of months of Clomid to save time - if I had done this I would have bought myself about two months) Me and DH then had bloods (HIV etc) done, another SA for DH and finally a planning meeting for IUI at the begining of November - due to Christmas and the clinic closing I wasn't able to start in December, but started in Jan.  So, I waited 7 months between my first appt at the fertility clinic and my first treatment - I think that is quite good from what I have read on here.  There was no waiting list as such, it just takes ages to get things like bloods and tests etc done.

My top tips (which I wish someone had told me when I was at your stage) are: 

1) Get informed and ask questions at all your appointments - don't be shy.

2) Get tough even when you feel vulnerable - you need to keep tabs on things, chase things up and keep things moving - the NHS is fabulous in many ways, but a bit of a nightmare to navigate and you will be dealing with your GP, Hospital, Clinic etc and you need to be the project manager and make sure you don't get lost in the system.  

3) Avoid looking ahead too much and take each day at a time, yes, each day - it helps get used to the often interminable waiting.

4) Make the most of FF 

Having said all that  I really hope you don't have to wait very long for your BFP. One of the many hard things about this is that none of us know how long our journeys will be and there are way too many "what ifs".  Me and all the others who have replied to your post know exactly how you are feeling - that's why FF is so fab.  All the best honey.


----------



## *Rose* (Oct 29, 2009)

Hiya its all a bit over whelming at the beggining hey

Im am currently at QM and also have PCOS. I was under Epsom hosp and they ref me after I was given metformin and chlomid. Metformin made me have the worst mood swings ever!!! Take each day as it comes. We were on the waiting list for about 9-10mths before starting IVF and had a six month break inbetween 1-2 cycles. We are currently waiting to decide what to do,have consult in April but want to investigate as much as possible before rushing in as 2 failed attemps.

There is a thread as nicnacnoo said for QM. Its a great thread and everyone is very nice and you get alot of support.

We are having a meet up tommorrow in Kingston-Harts boatyard at 7.30 if you want to come and meet up?


You can always PM me if you need to.

Lots of love and


----------

