Hi all.... hope you're all keeping as well as can be in these strange times...
Whats everyone's experience of NHS infertility treatment in terms of waiting times? Me and my partner were referred in December, had our initial consultation (over phone) in Jan which I thought was pretty quick, where they identified and arranged numerous test which we've attended. Been about 7 weeks now since last test, over 2 months since first test and still not had any information about results. I've phoned numerous times (unfortunately as much as I've tried to fight it, I've found myself becoming one of those pestering patients who phone frequently) but I just keep getting told once all results are in we'll hear about next steps. When I last phoned, 2 weeks ago, they said a letter was on its way, hmmmm 2 weeks even for 2nd class seems a long time.
Any suggestions about how to cope with the silences and not knowing? I'm honestly struggling, finding it agonising and traumatising not knowing about what's happening with our results or treatment. And each day, each month and each cycle that passes the feelings of hopelessness grows and grows.
I welcome anyone's advice on what helped them to cope with this ongoing waiting game 🥴🥴😪😪
Thanks all, and i wish everyone the best of luck in your own fertility journeys
Hi! I would definitely not worry about "being a pest".....it's interesting how we all think this...myself included
... if we phone once or twice a week. They'll be dealing with hundred of patients and very much use to it
...we wouldn't be phoning if there was regular contact lol! we all hate waiting! I would definitely want to know some answers and that does seem an unusually long time to wait. I guess it depends what test your waiting on? Normally blood results are between 24hrs-14 days from what I've experienced. If they've sent out a letter they can tell you over the phone what it says.....my doc/nurses do this regularly.
It does sound positive in how quickly it's moving for u though.....especially with covid delays. I would write down a list of qs, speak to a nurse and get some answers! They will understand. Just because it's NHS you shouldn't have less care as the clinic or hospital are getting your funding from the CCG which u can take to any number of clinics (normally) so don't feel bad about phoning.
Mixture of tests, blood, USS HSG, semenalysis.... I phoned my GP who managed to share some but not all as some gone to hospital so they said they can't access them. I'm confident all test results will be back now as it's been over 7 weeks.
When phoned hospital and asked what was in letter they said they couldn't see the content so honestly feel like hitting head against a wall, I know I'm not only patient they have and that there's many in similar situation, but not knowing is painful haha.
I'll be phoning again on Monday, just feel I'm being annoying and impatient... but I desperately am impatient. To the point I'm wondering about private.
I really sympathise! We were referred in August, first phone call in September and then had to wait 4 months for test result to come back. We are now waiting for a SSR next month with a view to start IVF but the delays are driving me mad. We seem to have about one appt every 6 weeks. Age is not in my side so I feel like the delays are just doing more damage. We are private patients now so I find that even more frustrating as I always thought private was quicker. Unfortunately I became a phone pest too as the lack of communication drove me mad.
Hi can I ask where you are getting SSR? We are also private and have been told they have been cancelled indefinitely due to covid. The wait is killing me!
Both our local fertility clinics are still doing it, I think it depends on what you are having, we are having a PESA but if we needed TESE there is a years waiting list as it’s done at the hospital
Ah I think we are the same. Have to wait for urologist appointment in August to find out what type of SSR is required. I don't know how I will cope if we get to August and are told it's another year!! Thanks
A PESA is an operation whereby sperm is removed from the epididymis using a fine needle whilst conscious. It’s the least invasive retrieval technique. A TESE is where they anaesthetise the man to take a biopsy from the testicle tissue or testes in the hope of finding sperm. Which one is needed will depend on the cause of the lack of viable sperm. In my husbands case they think he has an obstruction preventing sperm from being released but sometimes it’s not being made so they attempt a TESE in the hope of finding them somewhere
We were referred to NHS in January and still haven't heard when we will have initial consultation. I have phoned a few times but keep getting told to wait. We started tests privately and things are still moving incredibly slowly (although semen analysis results were next day!). I feel your pain, the waits are horrendous.
How frustrating... I feel lucky we had the first appointment so quickly after referral but sadly it hasn't continued at such a pleasant pace.It's an already anxious situation we find ourselves with fertikity issues... and I think the waiting and feeling out of control with things just adds to the agony... 😔
I'll keep my fingers crossed for you you hear something soon and things move forward for you xx
Unfortunately if you are going through nhs expect veeryy long delays and unanswered voice mails 😟it’s a very stressful journey which is made even more stressful by the Ivf nurses.
My experience with NHS was great other than communication in between things, but I expected this. I called my clinic when I needed to know what was happening to chase things. Don’t feel bad about that. I called while we were on the waiting list a few times too just to check how close we were.
My journey is different, so cannot really relate to waiting times with tests etc. But once we were officially on the NHS waiting list - covid had just hit the month before - so I feel it still went rather quick considering the pressure on the services. We were officially on the list in April and I got called in September to say we were at the top and our turn to start. Still took till November before I actually started medications - needed baseline uss and my period dates just did not suit in October 😇
Waiting is hard, especially when you still get your flow every month, so you know it is not working naturally either and it feels like you have waited so long already - but try take this time to focus on things you can control perhaps. Diet, hydration, exercise - taking your supplements, read books to prepare - I worked a lot on my mindset - and techniques to stay calm and reduce stress - and it really helped me further down the treatment line! Of course if you want to look into private options, that is also a possibility- just be mindful you may not get an NHS try back, our CCG only allowed one try and that would be cancelled if we had gone privately first. But it is always worth doing your research so you can make your decision - something you are happy with (compare waiting times/cost/success rates etc) 😇🥰
I wish you all the best and hope you get some answers soon!!! And hopefully the wait won’t be too long for you! 🤞 Xx
Hi, we got referred in December 2019 and our first NHS consultant appointment was Feb 2020. They arranged blood tests, semen analysis and a hycosy examination then Covid hit so my hycosy was cancelled. Managed to re-book it for May, then about 2 months later heard back from our consultant. Then as it took so long due to covid, had to have the blood tests again, and another semen analysis (they couldn't find hubby's results). NHS approval forms were due to be signed in Nov but wasn't until just before Xmas in the end (they messed up hubby's semen analysis again!). So forms signed at Xmas, had confirmation from the clinic in early Feb that we had funding and just had our first call with our clinic consultant this week. More blood tests to do, then another call in mid-March and then we should be starting medication. So long story short, it does take a while and like others have said, communication isn't great. We're having 2 NHS cycles but at a private clinic and so far the clinic have been great and a lot better at communicating!
Good luck with your journey. I know it takes ages and it's so frustrating waiting to find out what's happening, keep calling them! Xx
Our process was about 14months from GP referral to starting IVF medication (Oct-19 to Jan-21) although we opted to do 6 months of Clomid in the middle. We could have opted to skip that and go straight to IVF.
I found the NHS to be really efficient in our area, after being referred from GP to fertility consultant at the local hospital in Oct-19, we had our initial NHS consultation in early Dec-19 and were sent for all the tests (bloods, HyCoSy, semen analysis) which were all done in Dec-19 and Jan-20. We got results in Feb-20. We then opted to do 6 months Clomid because all the tests were ‘normal’ and we were diagnosed as unexplained. Unfortunately that made no difference and then our Aug-20 appt with the consultant was delayed 6 weeks due to Covid. We ended up having that over the phone in late September-20, where we decided to have IVF (also had option of IUI, or just keeping trying).
I had to repeat bloods in Oct-20, which didn’t meet our CCG criteria for IVF the first time (FSH has to be below 9 here - I didn’t realise you could fail a blood test!), so had to wait another month to repeat the day 3 blood test. The test in Nov met the criteria and we got our funding through in the first few days of Dec-20.
Once we had funding everything went fast. Our IVF clinic in Nottingham don’t have a waiting list, so we had our consultation in mid-Dec (online due to Covid) then just had to wait for my next cycle in early Jan to start IVF. I’m now 5 weeks pregnant!
It is a long process but I’d recommend trying to find the best person to contact at the hospital and keep phoning them. I was on first name terms with the consultant’s secretary and cried on the phone so many times (due to Covid delays and failed bloods!). She was amazing and I felt she always looked out for us and kept me informed. Although they insist on sending letters rather than emails, which slows things down a bit.
Wishing you all the best for this process. It’s an emotional rollercoaster but will be worth it in the end.
Congratulations on your pregnancy! Would you mind sending me a PM with which clinic you used please? We're in Leicestershire and considering going private due to wait time with NHS so would be keen to know of any clinics without much wait.
We were referred in May 2020, had a first appt July 2020, tests August 2020, referred for IVF September 2020, first ivf consultation November 2020, started meds Dec 2020, egg collection January 2021. Freeze all because of risk of OHSS, so expecting to have transfer in the next 2 weeks.
It’s a long process physically and mentally. I used to ring once a week for any cancellation appts which saved us a couple of months. I’ve never had my patience tested like with IVF! Good luck xxx
In hindsight, I might possibly have gone private, but saying that, I’ve spoken to a few people who are private and I’m not sure it’s made much difference! X
Cancellation appointments! I had forgotten, but I managed to bring an appointment forward by 2 weeks by overhearing at the reception that a lady might need to cancel. I called the next day and asked if she’d cancelled the appointment. She had and so I got it. 2 weeks doesn’t sound much but with my original appointment there was a chance AF would have already arrived and potentially would have then needed to wait another month to start treatment. Being proactive is definitely a bonus (and don’t be afraid to be even if NHS funded).
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