First appointment at qmc

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dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

First appointment at qmc

#1 Post by dk123 » Thu Dec 06, 2018 11:19 am

Hi,

Me and my husband have our first appointment on Christmas Eve, we have been referred from our local GP, due to unexplained infertility. We were expecting to be referred to a private clinic but they have sent us to QMC.
I have a few questions that I’m sure someone will know:

We have had SA test and blood tests and came back normal, so:

Will we have more tests?

How long do we need to wait for these?

And how long is the waiting list for Treatments?

Also a few posts say about not seeing a consultant on the first appointment, and just seeing a nurse, is this the case?

Any advise/help would be much appreciated.

Thanks you. DK

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#2 Post by loulou123 » Mon Dec 10, 2018 2:45 pm

Hi DK,
I tried to post a reply to you last week but I can see it's somehow been lost, so I'll try again!

I started this journey a long time ago and I can't remember all the details from the beginning, but I'll tell you what I can remember and perhaps others can share their experiences too...
I initially had some tests done through my GP who then referred us to Royal Derby Hospital's Fertility Unit - they were so lovely every time we went, so don't worry that you haven't been referred to a private clinic. The Royal Derby unit is like an off-shoot from Care Nottingham and although we've now switched to Care (as we ran out of NHS funding) I noticed it's one of the Care Nott'm consultants who we used to see in Derby so it's basically the same staff and the same treatment protocols whichever one you go to. It might be the same at QMC? When we were first referred there were a few more tests (like a lap and dye test and a uterus scan) and a fair bit of paperwork (to register for treatment, record some basic stats like height, weight, etc, and apply for NHS funding), so your first appointment could well be with a nurse to kick off the paperwork, or it could be with a consultant to discuss the next steps.

In terms of waiting times, there wasn't a long wait to get started but it did take a few months to get through all the various tests before we started treatment if that makes sense.

We also had unexplained infertility, and our first treatment was to try Clomid for 3 months just to see if it would help. Then we had 3 goes at IUI which were also unsuccessful before we moved on to IVF. We got all the pre-IVF tests and treatment on the NHS plus one full cycle of IVF (with ICSI). They may recommend a difference course of action for you depending on your age etc, I was 'only' 31/32 when this started so they may have thought time was on my side.

Unfortunately IVF does feel like a long waiting game, if you're not waiting for a test, you're waiting for an appointment, or a scan, or an egg collection date etc... I feel like I've accepted this now and it helps me to cope with the stress.

Good luck for your appointment on 24th, maybe take a list of questions with you so can ask everything you want to know. Get it all off your chest so you can try to enjoy Christmas!
Let us know how you get on xx
2016 - 3 x IUI (all BFN)
ICSI 1 (1 fresh) - Jan 2017 (BFN)
ICSI 1 (1 frozen) - Apr 2017 (BFN)
ICSI 2 (1 fresh) - Oct 2017 (BFN)
ICSI 2 (2 frozen) - Apr 2018 (BFN)
ICSI 2 (1 frozen) - Nov 2018 (TBC)

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#3 Post by dk123 » Thu Dec 13, 2018 3:21 pm

Thank you Loulou123 for your reply.

It’s really helpful. I’m 30 so sounds like I’ll have a similar journey to you.

I didn’t realise there are so many options available with the nhs.

Are you still going through ivf now?

AlsO how long after you’re first appointment we’re they able to give you the chomide? I’m so Keen to just get the ball rolling. It’s been such a long year!

Xx

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#4 Post by loulou123 » Thu Dec 13, 2018 3:51 pm

I completely understand where you're coming from, the waiting and not knowing is so hard.

I think we started being referred around January 2016, and within that year we had the initial diagnostic tests, 3 months on Clomid, and then 3 tries at IUI. We then started our first IVF cycle the following January as your body needs a couple of months rest before starting IVF. I knew Clomid wouldn't work for us, as I have regular periods and no problem with ovulation, but the doctor thought it was worth a try so I went along with it. It didn't take long to be prescribed Clomid once the ball was rolling, but I can't remember exactly how long it took, sorry. I think it went roughly:
step 1) review appointment with the consultant (this may take a month or so to get an appointment)
step 2) get the drugs (e.g. Clomid) and try them for 3 months (this obvs takes 3 months)
step 3) find out it didn't work
step 4) wait for another review appointment (1 month wait), and then move on to next treatment option (e.g. IUI). Repeat.
We did 3 back-to-back months on Clomid then 3 back-to-back goes at IUI with a short break in between for a review appointment, so it took about 8-9 months in total.
Clomid comes in pill form but for IUI and IVF you'll need to learn to inject yourself, you get used to it!

Yes, we're still having IVF... and still no success unfortunately! We've just had a frozen embryo transfer yesterday (our 5th transfer in total) so we're now in the dreaded 2 week wait to find out if it has worked. I don't think it will work though, it's hard to be positive after so may failures...

It seems our problem is that my immune system is too strong, as we have decent eggs and sperm and our embryos grow okay in the lab but they just won't stick around after transfer. After 3 failed transfers we did some extra blood tests and they came back to say my immune system was overactive (high natural killer cells) so now I'm on extra medication to try to calm it down a bit. I was on the same medication last time and it still didn't work so the consultant basically he said he can't work out why its not working for us.

I wish you better luck than we've had! For some people it works straight away, and I hope you are one of those lucky ones... x
2016 - 3 x IUI (all BFN)
ICSI 1 (1 fresh) - Jan 2017 (BFN)
ICSI 1 (1 frozen) - Apr 2017 (BFN)
ICSI 2 (1 fresh) - Oct 2017 (BFN)
ICSI 2 (2 frozen) - Apr 2018 (BFN)
ICSI 2 (1 frozen) - Nov 2018 (TBC)

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#5 Post by dk123 » Thu Dec 13, 2018 4:28 pm

Oh gosh that seems such a long wait.

I feel the same about chlomide, I have researched everything a million times and kept thinking that if I had a choice I wouldn’t bother with it as I am ovulating each month.

You’ve had such a Long journey, at least they are finally figuring out why yours isn’t working yet. Fingers crossed for you for this time!

Who knew having a baby would be so difficult. I wished we would have started trying sooner we might have had one by now! X

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#6 Post by loulou123 » Mon Dec 17, 2018 6:08 pm

did I say it's definitely worth learning to meditate? the waiting is endless and you need to find a way to relax so it doesn't drive you crazy! every morning when my alarm goes off I hit snooze and just do 10 mins meditation/relaxation before I get out of bed so I start the day calm. it really helps me to take it one day at a time.
x

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#7 Post by loulou123 » Fri Dec 21, 2018 9:21 am

This process is so hard, I tested today (9 days after a 5-day transfer so should be 99.9% accurate by now) and it was a big fat negative. Again!
I just wanted to say good luck for your appointment on Monday, I hope you get some answers.
Have a lovely Christmas x

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#8 Post by dk123 » Thu Dec 27, 2018 3:46 pm

So sorry to hear you had another negative, are they able to give you any indication as to why it was a negative?

Our appointment went quite well, however the first thing he said to me was he advises that we wait 2 years before seeking help, saying that he arranged a scan, and asked me to book a HSG test which I did today which will be on the 3rd January.

I couldn’t remember what he said but said something about by the time we have IUI it will be 18 months to 20 month by the time was start that, so I’m guessing we have some more waiting to do regardless.

I’m assuming depending on the results of the HSG they will put us on a waiting list. He was very positive and said we were jumping the gun seeking help so soon, but we have been trying 15 months and it’s so hard to stay positive when you know of so many people that struggle. Xx

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#9 Post by loulou123 » Fri Jan 04, 2019 12:38 pm

The advice is to seek help after 12 months, so you're not jumping the gun at all!!
I'm glad you've at least had a useful appointment to kick things off. Did they say you could start IUI after 18 months then, or would you have to wait until the full 2 years have passed? Maybe that's why I was put on clomid for 3 months initially, just to pass some more time.

As for me, the doctor has basically no idea why it's not working, so we're booked in for a karyotype blood test next week which will tell us if we have any hidden chromosomal abnormalities that might be affecting things. It's clutching at straws really, I don't think there's any problem with our genes, it's my body that's the problem! But as the test is "only" £360 we're having it. So far we've spent £13,000 on IVF... we've got one more cycle left on our Access Fertility package and then I think we'll have to stop before it drives us completely mad.

Good luck with the HSG test results. You should try to be positive, I think I'm in the bottom 5% when it comes to fertility, most other couples have had success by this point and I'm sure you'll be one of those! xx
2016 - 3 x IUI (all BFN)
ICSI 1 (1 fresh) - Jan 2017 (BFN)
ICSI 1 (1 frozen) - Apr 2017 (BFN)
ICSI 2 (1 fresh) - Oct 2017 (BFN)
ICSI 2 (2 frozen) - Apr 2018 (BFN)
ICSI 2 (1 frozen) - Nov 2018 (TBC)

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#10 Post by dk123 » Fri Jan 04, 2019 2:24 pm

Well I thought we had to wait to be put on the IUI waiting list, but when I went for my HSG scan then said that next time I have a period I can ring up and make an appointment. So not sure where the 2 years came from!

My HSG scan was showing everything clear, however my right tube took a big longer so I’m not sure if there was a small blockage and then the dye worked it’s way through. I’m not sure what to do now as so many people have said they ended up getting pregnant after the HSG as it cleared their tubes. So I’m tempted to give it a month and see what happens.

Everything is so expensive isn’t it! £13000! It’s so much isn’t it! How much is each round of iVF?

I’ve got everything crossed for you for this blood test! It must be so frustrating to not know why nothing is working! It’s so unfair isn’t it!? Xx

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#11 Post by loulou123 » Mon Jan 14, 2019 3:38 pm

Hiya,
How's it going? Have you made a decision whether to go for IUI straight away or whether to wait a month or two before starting? I had a similar experience on my HSG, one of my tubes was a bit slow but not blocked. It's entirely up to you what to do next, do whatever your heart tells you to do.

Yes, IVF is expensive! It's really hard to give an exact cost as there are a few different elements that all add up and each cycle is different. Plain IVF is around £3,300 plus £800-1000 of drugs plus £600 to freeze and store any embryos that aren't put back straight away. ICSI is an extra £1200. So roughly £4.5k to £6k per fresh transfer. Then if you do end up with any frozen embryos it's around £1700 to have them defrosted and transferred and £200-300 for those drugs. But then there are extras such as endometrial scratch, extra diagnostic tests, immune drugs if you need them etc. We've gone for a multi-cycle package with Access Fertility to save costs overall but you still have to pay for the drugs separately we've had a few extra tests done. Once our NHS funding ran out Care gave us a price list so at least there were no surprises.

We've got a review appointment on 8th Feb to find out our karyotype test results and decide what to do next, so in the meantime we've booked a skiing holiday so we can have a proper break from it all!
x

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#12 Post by dk123 » Tue Jan 15, 2019 6:23 pm

Hi,
I’m ok thank you, how are you getting on? Such a good idea to book a trip away! The 8th of feb will soon fly round!

I think we’re going to wait a month or so, asi used to have pms pains about 10 days before my period started and this month I haven’t had anything so far, I feel so cleared out (I know it sounds weird) so I’m going to see what happens and enjoy being pain free for a while. Then if nothing happens at least I know I can book IUI straight away.

I don’t hold much hope in IUI, I don’t know why I just can’t see it working.

I have been looking into ivf, in case my 1 funded go doesn’t work. I think I found one for £13k but it’s unlimited goes for 2 years. I think it’s strange that you have to pay for the drugs yourself, surely it’s part and parcel of it!

I find it all a bit confusing at the moment, so I’m trying not to think about it too much!

I hope you have a lovely ski trip! Keep me informed about your results, I’m keeping everything crossed off some good news for you xx

Jo1984
Posts: 447
Joined: Sun Dec 04, 2016 9:28 pm

Re: First appointment at qmc

#13 Post by Jo1984 » Mon Jan 21, 2019 7:32 pm

Hey, hope you don’t mind me jumping in, but a lot of people don’t know youncan refuse any stage of treatment AND you can pick what clinic you want to be referred to on the NHS. I had an HSG and both tubes were blocked, they offered me surgery and I didn’t like the look of the success rates so we opted to go straight to NHS IVF and named CARE Nottingham. We had no waiting list and were cycling very soon. Just something to think about as a lot of people think they have to do every stage, but you don’t have to! The downside is that if you do skip clomid/iui you can’t ‘go back’ on the NHS. Also check out success rates and go see clinics - if we had been referred where they wanted to send us the success rates for my age group were 30% as opposed to 50% with Nottingham! I’m a huge fan of researching your options and taking control! Good luck with your treatments ladies xx
ICSI cycle started 25/12/16
ET 02/02/17 - BFP! DS born 21/10/17 :D
FET 06/02/19 - BFP! DD born 06/11/19 :D

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#14 Post by dk123 » Wed Jan 23, 2019 10:16 am

Hi jo1984

Thanks for posting! I was told at the appointment that I can skip the IUI but was told about the part about not going back, that’s why I think I will go through with it. I’m sure there must be people out that that IUI has worked for. I’m just not hopeful. Lol. After so many negative pregnancy tests it’s not easy to stay hopeful! X

Jo1984
Posts: 447
Joined: Sun Dec 04, 2016 9:28 pm

Re: First appointment at qmc

#15 Post by Jo1984 » Sun Jan 27, 2019 5:41 pm

Oh there definitely is, I just knew for what we had a diagnosis for the odds were next to nothing :)

Good luck with it all - and stay positive :)
ICSI cycle started 25/12/16
ET 02/02/17 - BFP! DS born 21/10/17 :D
FET 06/02/19 - BFP! DD born 06/11/19 :D

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#16 Post by loulou123 » Mon Feb 11, 2019 12:05 pm

Hey DK,
Just a quick update from me: I had my review appointment on Friday and we've been recommended to have an ERA test to check if my uterus lining is "out of sync" with the embryo transfer. Apparently this can cause implantation failure, so it's worth a try. It costs over £1000 and means delaying our next IVF cycle by 3 months, but I guess at this stage we're running out of ideas so I'm willing to consider anything to find out why it's not working.

How are you? Have you made a final decision on whether to give IUI a go? Don't worry too much about your options with Access fertility just yet - hopefully you won't need to go down that path!

Jo 1984 - thank for the info, it's always interesting to hear other people's experiences. I think Care Nottingham are fab, and even thought it hasn't worked for us so far I would really recommend them.

Have a good week ladies xx
2016 - 3 x IUI (all BFN)
ICSI 1 (1 fresh) - Jan 2017 (BFN)
ICSI 1 (1 frozen) - Apr 2017 (BFN)
ICSI 2 (1 fresh) - Oct 2017 (BFN)
ICSI 2 (2 frozen) - Apr 2018 (BFN)
ICSI 2 (1 frozen) - Nov 2018 (TBC)

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#17 Post by dk123 » Mon Feb 11, 2019 4:10 pm

Hi loulou123,

I’m so glad you’ve got in touch, I have been thinking about you and how your tests went, if I was you I would definitely go for the era test, I feel like it might finally give you answers! If it is to do with your lining is there anything that they can do?

We have decided to go for the IUI. I have to ring when I start my next bleed, so will be around this time next week. Ive been trying to read some IUI success stories so I at least go in with a bit of positivity. I am getting a little bit excited actually, it will be nice to get the ball rolling!

I’ll keep you updated with how I get on! Xx

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#18 Post by loulou123 » Tue Feb 12, 2019 10:11 am

I've just realised I forgot to say anything about the last set of test results, d'oh! The karyotype test came back as normal, so we don't have any hidden chromosomal abnormalities that might be affecting our embryos.
That's why the doctor has recommended the ERA test, to see if that could explain the cause of our problems. If they find out your lining is out of sync then they adjust the timing of the embryo transfer to suit your body - either pull it forwards or push it back by 12-24 hours. It's hard to believe that would make such a difference, but apparently it does work for some people so we'll see what the test result says.

I think IUI is a good idea, it doesn't take that long (I think we did 3 months back to back without a break) and at least you'll have given it a try. You have nothing to lose and everything to gain... one of my best friends got pregnant through IUI so it definitely works for some people. Stay positive!

xx

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#19 Post by dk123 » Tue Feb 12, 2019 6:37 pm

Hi,

Omg as if something as simple as moving the transfer a few hours could make all the difference! I’ve got everything crossed for you! Surely this has to work, you’ve done everything else! Have you booked a test yet?

My husbands boss said a few of her friends have had success stories with IUI, so I’m staying positive and think 3 goes is a good amount. I’ve just got to the stage where I don’t even think I’ll be pregnant, I used to count down the days in my 2 week wait! But now I just count down for my treatment! xx

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#20 Post by loulou123 » Wed Feb 13, 2019 12:05 pm

Depending on how quickly I can get my medication, the test will be either end of March or end of April. I have to start taking medication on a specific day in my cycle, then it takes about 5 weeks of medication to build up to the test. If I don't get the meds in time to start next Tuesday I'll have to wait a month before I can start. So we won't know anything for a while... Then if we do get a useful result out of the test, we'll have to collect new eggs and create a new batch of embryos, freeze them all, and then do a frozen embryo transfer so they can manage the timing perfectly. I've worked out it would be October / November before I could get pregnant, which seems just ages away.

As for you, 3 goes at IUI is plenty, the research says if IUI hasn't worked after 3 cycles then it's probably not the right treatment for you, so it sounds like your plan is very sensible.

xx

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#21 Post by dk123 » Thu Feb 14, 2019 6:16 pm

Oh that does sound a long process, but if it works then it will all be worth it in the end! There are so many tests around aren’t there!? It’s so clever what they can do!

I’m just praying that my period comes on Monday rather than the weekend so I can ring up and book my IUI. I’m due on Sunday but my cycles are so strange at the moment that they could start any time! Xx

Jo1984
Posts: 447
Joined: Sun Dec 04, 2016 9:28 pm

Re: First appointment at qmc

#22 Post by Jo1984 » Sun Feb 17, 2019 9:44 pm

Loulou I was reading about this test just the other day - apparently it’s thought to be quite common (1/10?) women have a different ‘window of implantation’. As frustrating as it is I do hope that it is that so they can solve it! Best of luck :) x
ICSI cycle started 25/12/16
ET 02/02/17 - BFP! DS born 21/10/17 :D
FET 06/02/19 - BFP! DD born 06/11/19 :D

loulou123
Posts: 98
Joined: Tue Oct 30, 2018 2:16 pm

Re: First appointment at qmc

#23 Post by loulou123 » Mon Feb 18, 2019 3:50 pm

Hi Jo,
The doctor didn't say how common it was, but it was interesting talking to the him about it, he'd previously said the test was really unreliable and he was reluctant to use it, but when we saw him recently he said there was a new version of the test available that was much better so that's why he's recommended it.
I can see that you've recently had a BFP! Congratulations!! It's so lovely to hear success stories, I hope everything goes smoothly for you x

DK,
How are you getting on? x

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#24 Post by dk123 » Mon Feb 18, 2019 5:01 pm

Hi,

I’m still waiting for my period to start, my body likes to do this and play tricks on me, very frustrating.

I’m getting excited to book my IUI though, I’m going to try and go in with a positive mind and it’s jist nice to finally get some help! Xx

dk123
Posts: 59
Joined: Wed Dec 05, 2018 10:56 am

Re: First appointment at qmc

#25 Post by dk123 » Sat Feb 23, 2019 11:49 am

Just an update, I start my IUI injections yesterday and going back in on Wednesday for a scan. So fingers crossed all goes ok 🤞🏼 Xx

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