# What to expect?



## smcwales (Apr 28, 2010)

Hi everyone

I have recently been reffered to see Mr Griffiths at UHW as I have severe endometriosis.  I last took the pill some time in 2003 and I have never been pregnant.  I had a laparotomy in 2008 when the endo was discovered and a 10cm cyst was removed along with my right ovary.  I had an u/s done in December 09 and I now also have a fibroid on the left hand side.  It has taken me so long to just get reffered to the type of specialist I need and now I am wondering how long everything else will take?

Once I get my initial appointment with Mr Griffiths will he put me straight on to the IVF waiting list?  And if he does then what happens.  I really have no idea what happens or what to expect.  I feel so in the dark and I just want to scream at someone to just listen to me and get on with things.  I am so fed up of waiting for everything!

Sorry to rant a bit but I have no one to talk to that knows anything about infertility and it is so hard emotionally.


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## Ravan (Apr 4, 2008)

Hello smcwales.I dont know anything about waiting times ect as Ive always self-funded,but I'm sure someone will be along to fill you in with a rough guide.

Just wanted to welcome you to the site and wish you luck with your treatment.


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## Sam76 (Mar 23, 2009)

Hi smcwales,

Welcome to FF   you're certainly in the right place for plenty of support and people who will understand just how you're feeling. Feel free to have a good rant - we all do from time to time and always find it helps  

  I know what you mean about waiting - we're now in our 6th year and still  waiting   I've also got severe endo and have seen Mr Girffiths (although i saw him privately and was already a patient at ivf wales). Have you been to see your gp about fertility? I was my GP that refered me there (eventually   ). I've found that the only way to make sure that things are moving forward is to keep phoning and chasing everyone - GP and hospital. 

Good luck with your journey from here  - hope it's a short one   

xx
Sam


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## kara76 (Dec 14, 2004)

hiya smcwales and welcome to fertility friends

sorry to hear about your endo and the lose of your ovary.
mr g is fab and you will like him, he really listens to his patients. as far as i know the wait for nhs ivf treatment is around 18months at the moment. 

hope your appointment goes well and deffo call and chase it up if you have been waiting a while


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## smcwales (Apr 28, 2010)

Thanks for the replies.  I think that tomorrow I will be chasing up for timings for my appt. with Mr Griffiths and I will ask about ivf reffereal aswell and then will go and see my GP about being reffered to ivfwales.

Thank you all and I look forward to getting to know you all better.

Sian


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## Jule (Oct 12, 2008)

Hi sian welcome u should get loads of support here.good luck with your chasing on mon.everything seems to take a while but if things are moving forward hopefully it won't feel so bad.just checking you are going to be waiting for your nhs appt as privately things r much quicker


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## smcwales (Apr 28, 2010)

Just to update you I finally got my referral letter where it needed to be last Tuesday 18th May.  I have been told it is up to 12 weeks for the initial appointment with Mr Griffiths which will mean I have to have a date by August 10th and treatment has to be started by 26 weeks after referral which will be November 16th.  I now have all the dates marked out so I know when things have to be done by and I will be ringing and nagging a lot lol.  If I don't do it no one else will do it for me will they!  Two of the first things I will be asking is for a lap and to be put on the IVF list and I will then be able to relax once I know those steps have been put in place.

Thanks for your support it really does mean a lot <3


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## kara76 (Dec 14, 2004)

smc

its good you have some rough times to work towards

this is a great site and the girls are all very supportive


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## Jule (Oct 12, 2008)

Smc glad u have a plan its good to have something to work towards.just keep onto everyone


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## Daizymay (May 13, 2010)

Hi, I don't want to be negative, but my experience of waiting times has not been positive at IVFwales. I was originally seen by my local hosp where all tests were completed in March 2008. June 2008 my consultant referred me to IVFwales. I had repeated cancelled appointments taking my 1st consultation with Dr Griffiths to Nov 2008 (a year to the date I first saw my GP!). At this appoinment i was (supposedly) put on waiting lists for 1) laparoscopy (told 4mth wait) 2)IUI (told 4mth wait) & 3)IVF (told 12-14mth wait). I breeched the waiting time for the laparoscopy, repeated phone calls didn't help so I wrote a formal complaint - twice! I finally had my lap in July 2009 (4mths later than expected). As for the IUI/IVF, in April 2009 I made routine enquires as to where I was on both lists, only to discover I had never been put on them!!! Come nov 2009 (12mth waiting for IUI/IVF) I was told Jan 2010. In Jan 2010 I asked to go private but was told by the consultant (not MrAG) that I was top of the list and going private at this point would not bring treatment any quicker -  I was told treatment would be Feb2010. Feb I got my IUI open evening invite, expecting to start treatment, only to be told next available 'treatment planning session' May 2010!!! I finally got to May 2010 and my first IUI cycle (which has failed today - BFN)! So, and sorry to waffle on, from point of seeing my GP to first IUI treatment has been a huge 2 & 1/2 years!!! If I knew then, what I know now I would have gone private right in the beginning without any hesitation! So the moral...keep phoning/checking/double checking/asking questions/complaining (politely) and fighting - you really do have to be your own case manager!


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## Sam76 (Mar 23, 2009)

Hi Daizymay

So sorry to hear about your bfn   and your wait. Welcome to this thread I'm sure you'll find lots of support here - and other ladies who can understand just how you feel. 

unfortunately I think that lots of waiting is not unusual - there's far more waiting in this process than we expected too. Your advice to everyone to keep calling and checking is spot on. I'd add to that to request a referal from GP to IVF Wales straight away to get the ball rolling. After first seeing GP I was sent for an HSG at a different hospital (waited months for that) then months to go back to get the result only to be told it was all clear and to go and 'be normal' for 6 months. It was a good year after first seeing GP that we were referred to IVF Wales, then had months of waiting for IUI - 3 months after IUI, I was diagnosed with severe endo and told IUI would never work for me anyway and IVF was only way forward. I'm sure there are plenty of others who'd do things differently with the benefit of hindsight - and unfortunately they probably only end up posting here after going through the mill a few times! .....If there are any lurkers at earlier stages of your referal/treatment take heed   #

Sam x


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## smcwales (Apr 28, 2010)

I have already learned that if I don't follow up myself things do not get done!

I asked my GP about being referred for IVF and was told they can't do it!  Is that wrong? As if it is I will be really p^%$ed off.  Does anyone have any advice in this situation?


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## kara76 (Dec 14, 2004)

your gp should be able to refer you, dont understand why not, you need a go referrel to go there as a nhs patient if you wana go private just call them


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## smcwales (Apr 28, 2010)

Thanks Kara I think I might phone them anyway and get some of my questions answered.  I hate my GP's they suck it took over 8 years to get my endo diagnosed as they just don't listen or do the job they are supposed to be doing properly!  I had to insist on being referred to a gynae as they kept insisting I had IBS due to the time it took I ended up losing my ovary I even feel like sueing them at times perhaps they may listen then!


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## Sam76 (Mar 23, 2009)

Did they tell you on what grounds they wouldn't refer you hun?

Maybe you could write to the practice manager if you're not happy and outline your concerns - and if that doesn't work put in formal complaint to the Local Health Board (assuming you're in Wales  )  I reckon you've got a good case to make with the delay in diagnosing your endo. x


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## smcwales (Apr 28, 2010)

Sam the GP I saw said that they don't refer for IVF only specialists can do it.  Which is obviously a blatant lie!  At the moment if they had told me my weight is the problem then I would understand.  I have joined ww and have lost 11lb so far I will get down enough to do this tx.


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## Sam76 (Mar 23, 2009)

Sounds like your GP is just being obstructive. Even if you do need to lose a bit of weight to meet the criteria for treatment, I'm sure the GP can still refer you. Have your tried asking to be refered to a fertility clinic/IVF Wales? (rather than for IVF). It would be pretty stupid if they were pretending that they didn't think that's what you wanted. Technically the GP probably can't refer you specifically for IVF as the decision about the most appropriate treatment would rest with the specialist at the clinic, but surely GP's know when patients ask to be refered for IVF that they just want to take the next step to investigating possible problems and then getting treatment. Have you got another appointment to see GP? can you see a different Dr at your surgery (i know there are some that are far better than others at our surgery!) x


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## smcwales (Apr 28, 2010)

Sam I will try again I will see another doctor and see what they say.  We already know the endo is causing me issues that is why I have been referred to Mr G.  I just hate all this waiting surely 2 years after surgery I should be further into this so far all I have had done are blood tests checking my hormone levels and day21 progesterone and an u/s to check I did not have further cysts forming.  I feel so frustrated I just want someone to listen to me and do something constructive!


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## kara76 (Dec 14, 2004)

smc mr g will be able to sort you out, he is part of IVF wales and can put you on the list for IVF etc so sod your gp i say

it took me 7 years to get to a fertility clinic! which is madness. do you know when your seeing mr g


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## Jule (Oct 12, 2008)

Your other option is to go to the ivf wales as a private patient and get some tests done privately.I done this while the gp was referring.also gp can't say they can't do it when u already a patient there


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## smcwales (Apr 28, 2010)

I know Mr G will sort things out I am just so frustrated with waiting my last doctor didn't seem to want to do anything just the bloods and u/s he thought I would have gotten pregnant naturally but I feel like he has wasted the past 2 years for me and dh.  

Kara they say from referral you should be seen within 12 weeks so I will hopefully get my appointment with Mr G by mid August!  I am tempted to pay to see him privatley for an initial consultation @ Spire but I am not sure if this would be beneficial at all?

Jule I am hoping to get all the tests done and surgery on the nhs so that I have my savings to pay for the IVF when we get to that stage.  I am just being impatient!


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## kara76 (Dec 14, 2004)

the waiting is hard but fingers crossed you will get your appointment soon


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## Jule (Oct 12, 2008)

Hi emma really hope things are better for you from now on in


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