IVF/ICSI in South Wales

(60 Posts)
happylass Fri 04-Apr-14 16:57:17

Hi. Yesterday we were told we're being referred for ICSI on the NHS. We were also told the waiting list here in South Wales is 12-18 months. Just wondering what other people's experience of the waiting list is? Is it closer to 12 months or more likely to be 18 (or more? shock). Also we've pretty much decided that we are going to have one private cycle whilst we wait. We've already been to an open evening in CRGW. Would be interested to hear experiences of this and other private clinics in the area. Many thanks.

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carriebella Fri 04-Apr-14 19:03:13

Hi, I have no idea about NHS waiting times as I never qualified but I am currently cycling at CRGW and they have been great so far, although i'm still only down-regging i've found all the staff very friendly and helpful. I had all my tests at another clinic on the NHS but have found CRGW much more welcoming.

DrSocks Fri 04-Apr-14 20:23:47

Hi Happy. I can't shed too much light on the whole waiting list situation but I thought I'd share our experiences. We've found the process unbelievably slow. I first went to the FC in Nov 12, it took til Sept 13 to work out what was up (issues on both sides). Was packed off with a trial of Clomid, failed miserably and went back for follow up in November at which point they said DH then needed to take vits for 3m and then they would do a new SA. He did that and we had to wait for the next appointment before we get actually put on the bloody waiting list, that appt is in 2 weeks.

In the meantime we went to CRGW, who did a scan which showed my ovaries weren't as knackered as the NHS consultant suggested. They did a proper monitored cycle of clomid with scans, oestrogen support and a trigger shot on which I ovulated. I didn't get a BFP but feel its worth trying a few more goes whilst we wait for our NHS ivf, which as we are moving to England in the summer in an area with SIX WEEK wait, won't be too long. I can't recommend CRGW highly enough, I have literally wept with relief at their professional, personal and optimistic attitude. If we weren't likely to get our NHS IVF in the near future I would sell all my worldly belongings to have it there.

Let me know if there's anything else you want to know.

Dreamy33 Fri 04-Apr-14 20:33:03

Just typed a long post and then lost it so apologies for this short one, I can't face writing it all again!!

We have been on waiting list at IVF Wales for 12 months. Been for one appointment and was told it's likely to be the full 18 months before we hear more.

In meantime, we've been to LWC and found them to be fine. They were happy to accept nhs test results which saved us a good bit of money.

Good luck x

happylass Sat 05-Apr-14 07:07:44

Thanks ladies. Great to hear such positive things about CRGW. Dreamy can I ask what your first NHS appointment was for if you still have another 6 month wait before starting?
Drsocks I'm outraged at the difference in waiting times between here and England. It's an embarrassment and I'm definitely writing to the WAG to complain. Someone on my conception forum from Gloucester had her first appointment at the FC in the same week as me back in September. She's already had her NHS ICSI and is currently about 14 weeks pg whereas I'm not even on the shockingly long list yet angry

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Dreamy33 Sat 05-Apr-14 12:27:20

Our appointment at ivf Wales was a little disappointing having waited so long for it! We reviewed all test results and dr confirmed that ivf was the best way forward ( I thought we'd established that a while back when I was referred but apparently we might have been advised to try iui first). She explained that I would need my amh levels tested (something we'd already done privately) and we could either have them done there and then or wait until we are contacted again in about 6months and have it done then. Well because we'd waited so long for this five minute consultation, I was determined to do something so had blood test on that day. Called for results but they are unable to discuss results on ohone so was advised to make another appointment. That's when we made the decision to go private!!

Hope this helps. Let me know if you'd like to find out anything else. I know I always like to be prepared for the next step!

happylass Sun 06-Apr-14 09:11:59

That does sound like a waste of time Dreamy. I'm guessing they just get you in to make it look like something is happening. I've already had my AMH done on the NHS. We were told that the rules have recently changed and all blood work has to be done before the referral can be made. Fortunately we are both getting those bloods done tomorrow so hopefully it won't be too long before we get on the list. We get married in August so I think we'll aim to start a private cycle as soon as we get back from honeymoon.
Wishing everyone good luck x

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kelsey0092 Thu 22-Oct-15 20:36:48

Hi im am currently waiting for treatmemt to start at cardiff wales fertility institute. We had to wait till i was 25 years old to be put on the list even though we have had all tests done since i was 18yrs old ... i reffered on my 25th bithday and had to wait a minimum of 12 months to habe our 1st consultation at the clinic...we had this in june this year where we had to sign forms, proof of id ect...i then had to go back in july for a scan and bloods and hubby had to do another sample ! We now have our next appt next week , (3 months later )where im a bit confused as to what will happen at this appt as they havent really explained much to us... anybody know what will happen? How did u get on?

sunshineonarainyday1 Sat 24-Oct-15 21:01:05

Hi Kelsey

Not sure I can offer much help as we didn't end up starting our NHS treatment as we went privately a few months before our treatment was due to start. Have you had group session where they discuss what will happen in IVF (I didn't have this in private but I know they do this in NHS before treatment begins)?

Once I had had all tests done (bloods for both myself my husband for hiv, hepatitis, AMH for me, urine tests for chlamydia for both of us, need to be within 3 months of treatment starting) we went to clinic to plan when we could start based on my cycle and it was all steam ahead. I paid for my drugs on day 1 of my next period and they told me what date to start injecting.

Hopefully it is very similar in the NHS

Good luck, sounds like you've had a super long wait to get to this stage xxx

sunshineonarainyday1 Sat 24-Oct-15 21:22:58

Hi Kelsey, I just read your post on another thread. Was it male infertility when you first saw someone when you were 18? If that was the case seems crazy they would tell you they couldn't refer you until 25. What was the reasoning behind waiting until 25? I know there's not many cycles of IVF done below this age but I didn't realise you couldn't get referred until then.

kelsey0092 Sat 24-Oct-15 21:26:32

Hi thank you for ur reply. No we have not had a group session yet we have had bloods and internal scans done and hubby has done another update to sample... we have signed all the paperwork..when they rang to give us our next appt she said they would discuss treatment and talk about results ect and then its straight forward from there?? But cant be that straight forward if im still unsure where along the line we are with starting treatment .... yes its been a very long wait but more annoying that people are seen before us when they were reffered after us ( i know of somebody) just dont understand the nhs system 2bh lol i assume u went private due to the long waiting list ? How did u find the injections ?? Im a bit daunted by all of this ..hope its not to bad.. where are you recieving treatment from if u dint mind me asking ? Xxx

kelsey0092 Sat 24-Oct-15 21:41:44

Hi sunshineonarainyday ..yes test showed that hubby had low sperm but good motality and everything came back as fine for me other than low hormones... apparently nhs only accept u when ur 25yrs old and over so we just had to wait till my 25th birthday till we got refferred...annoying i know ! X

happylass Tue 27-Oct-15 06:58:58

Hi. I clicked on this thread not realising that I'd started it! Just an update on what happened with us that may help with timescales for anyone else. After being referred from the Royal Glam in April 2014 (we had all the tests there before we were referred) we were finally given our first appointment at the Heath in June this year and were told we could start straight away. We had a holiday booked so didn't get started until late August. Unfortunately that cycle was cancelled as I mysteriously didn't respond. We've just started another cycle there now and at the moment all seems to be going well.
Kelsey is the Heath your local hospital anyway? Just thinking it may have been different for me as I had almost a year of appointments and tests at the Royal Glam FC before I even got referred to UHW. Also, I didn't have a group session there. They just gave me a booklet with all the info and the nurses showed me how to use the meds when I started. You may find that you are ready to start at your next. appointment. We certainly weren't expecting to be told we could start the first time we went there. Good luck and let us know how you get on.

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kelsey0092 Tue 27-Oct-15 13:52:55

Hi happylass im the same as you iv had all the tests done at royal glam hosp and finally was referred to the heath in july this year smile1st appt was a discussion and a intenal scan for me and new sample for my hubby ...we have our 2nd appt this week at the heath where i think we wil discuss hubby results and blood tests but was trying to find out if at this appt we would be given dates to start treatment...did they tell u at ur 2md appt that u could start treatment soon ?? Thanks for getting back to me nice to know that there are others going through this aswell xx

happylass Tue 27-Oct-15 21:31:14

Hi Kelsey. We were told at our first appointment at the Heath that we could start straight away. We'd been waiting over a year since referral from the RG by that point though so maybe that's why. I know they are trying to speed things up a bit as there was a huge backlog due to the delayed opening of the FC in Neath a few years back. Good luck with your appt this week - we may well be there at the same time given I'm in every other day at the moment!

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kelsey0092 Wed 28-Oct-15 09:17:03

How are u going back and for every other day ? Whats that for if u dont mind me asking. Have u had treatment before? How are u finding it ? Thank you , im looking forward to it now to see where what the next stage is smile x

happylass Wed 28-Oct-15 10:21:30

Hi Kelsey. Once you start stimms they will want to scan you every other day from about day 5 onwards to keep an eye on what's going on. We did a private cycle whilst waiting for the NHS and we also had an NHS cycle cancelled. I do find the Heath FC a little chaotic but everyone is absolutely lovely.

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kelsey0092 Wed 28-Oct-15 11:22:40

Ah ok thank you for the info smile hope it all goes well for u this time x

kelsey0092 Sat 31-Oct-15 10:35:14

Hi just and update we had our appt and have left with our 1st lot of injections to start taking next week smile.very excited but a lil nervous! Hope ur treatment is going ok and ur feeling good x good luck

happylass Sat 31-Oct-15 14:29:33

Ah that's brilliant news! I didn't realise they did appointments on a Saturday. Are you long protocol? I'm guessing so if you aren't starting until next week. I've always done short protocol. All has gone very well this cycle and I'm triggering tonight ready for EC on Monday.
Hope all goes well with your cycle. Let me know how you get on and give me a shout if there's anything I can help with.

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kelsey0092 Mon 02-Nov-15 21:51:16

No our appt was on thursday sorry for the miss understanding. Did not expect to of come home from the appt with our 1st lot of treatment smile feeling very excited but also nervous ! Yes i am on long protocol. Hope ur EC went well today xx just a quick question how was u feeling after injecting burseline ? Did u have many side effects? Xxx

happylass Mon 02-Nov-15 22:23:42

Ive only ever done short protocol which means that I injected both drugs together from the start and the Menopur counteracted the effects of the Buserelin. So I didn't really get any side effects other then maybe headaches for the first few days. I know it can cause side effects such as hot flushes and mood swings for those who do long protocol. I didn't use either of those drugs this time though as I did antagonist protocol and I found that the drugs affected my sleep pattern and ruined my appetite so I'm glad to see the back of those!
EC went well today. We got 8 eggs which I'm delighted with as my AMH isn't great and I completely failed to respond to my last cycle so things weren't looking good. Hope all goes well with your first injection. The thought really is worse than the reality - you'll soon be doing it without batting an eyelid!

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emmasmutes Mon 02-Nov-15 23:27:06

Hi. I just tried to post a question but it wouldnt upload. So i hope its ok to ask it here.
I have had blood tests and ovulation tests and a perfect HSG. Today i had a consultation at the royal gwent, and the consultant says we will now be under cardiff uni hospital and that the waiting list is upto 18months!
So what im wondering is can i go private now and will a private clinic except my tests ive already had on the NHS?
Just do not know where to turn right now. sad

happylass Mon 02-Nov-15 23:34:54

Hi Emma. Sorry you feel you don't know which way to turn flowers. My situation was very similar to yours. It was probably more like 14 months between being referred and our first appointment at UHW. The waiting time is ludicrous but I've been told they are reducing it slowly. Our private FC accepted all our NHS test results - I simply emailed my consultant's secretary and she posted them out to me. Unless you are going to look outside Wales you have a choice of just 2 private FCs - LWC in Cardiff and CRGW in Llantrisant. We used the latter. Both hold open evenings and I would suggest going along - you will find them more than happy to answer questions. I hope this helps - just let me know if there's anything else you need to know. Good luck.

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emmasmutes Tue 03-Nov-15 00:21:37

Oh thankyou for your reply happylass. CRGW have an open evening on the 12th so we will go there.
Such a relief to know previous tests are excepted by private clinics.

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