Problems with clinic - advice needed

[Dpwpool]

Hi guys,

Hope someone can offer advice. Sorry this is a long rant.

Last year I (39 at the time) went for a fertility MOT and discovered I have an AMH of 5 and AFC of 10. After a consult I decided to try egg freezing as I don’t have a partner and wasn’t ready to go it alone just yet. I first encountered problems with my clinic when it came to me starting the cycle, it’s like they kept forgetting about me and I had to speak to a different person every time until a man from Stork turned up with a blue box and said ‘put that in the fridge’. I honestly had no clue what to do. I was on 450iu Menopur, added 250iu Cetrotide a few days later, then 1m Buserelin trigger. Retrieval day got 3 eggs, only 2 mature. Devastated. Anyway I expected a follow up call from the clinic but nothing happened. I left it a week and was driving home one day when I realised I was in a very dark place as I thought hmm, I could just drive my car into a wall. Later that day I had a searing pain in my breast, like a gland was infected, roasting hot and painful to touch. I phoned my mum and said I didn’t feel too well, told her where my head went when I was driving and she said that’s probably the volume of meds you’ve taken. I thought I’d be kind to myself and just keep an eye on myself, few days later the breast pain went down and then a week later the crying stopped 😂

I got fed up waiting for the clinic to call so after 2 weeks I rang them to ask when I’d have a review with my consultant. The woman on the phone said if I wanted to speak to a doctor I’d have to pay £150. I was confused as I’d presumed I’d be given a follow up after paying £6k, how could they do a procedure and then not speak to me about it? I told the lady that I’d had nothing but trouble with the clinic, from calls not being returned, forms not being sent, drugs being sent late in the day, then on top of that not giving a follow up. She said she’d speak to the Quality Manager and call me back.

The Quality Manager didn’t ring me back for 2 weeks, she listened to my concerns and said she’d get back to me but didn’t. Another Quality Manager rang me 2 weeks after that (so we’re 6 weeks from my op). I had to run through it all with her and her response was that someone should have called to check I was ok after the op and that a review meeting should have been booked with a doctor. She was apologetic, said they’d let me down and they’d make it up to me. Sure enough I got a review with a doctor and we planned changes to my protocol to see if we got a better result.

Round 2 I’m on 450iu Menopur and 0.5ml Buserelin daily until trigger with 10,000iu Gonsai. To say I felt awful was an understatement but as I’m sure everyone does, we grin and bare it. Retrieval day was last Saturday, my hopes were so high and after the op the doc comes to tell me they only got 2. I burst out crying in front of him, think I’d let my heart get excited with the other doctor saying we’d hopefully get 5-6. Bumped into embryologist on the way out who said the 2 were mature so all not lost.

So this week I waited for my call from the clinic to check in and arrange my review but nothing happened and I called them on Thursday. The lady on the phone didn’t have a clue what I was talking about. I ended up emailing the Quality Manager saying the same as last time has happened. She replied yesterday saying that as I’m doing straight up retrieval, I don’t get a follow up, only embryology would call to say what was mature. This completely contradicts what she told me previously. I’m absolutely furious.

My problem with the clinic isn’t that my ovaries are complete and utter rubbish, I get it, I’m 40. My problem is that I at least expect some aftercare, someone to speak to me and explain everything, tell me if I’m wasting my time, give me alternatives and solutions, take charge of my care, tell me if there’s more that I can do to increase success in the future…y’know, all the stuff they learn in the god knows how many years they spent specialising in their field and not me googling and trawling forums. If I’m having trouble now and I feel like trash then how am I going to feel if I’m trying to get pregnant, will they just leave me to it? I honestly feel like I’m in a void where I have no answers to anything, I’m £12k down and I’m still no clearer.

Am I expecting too much from my clinic or is this just the way it is? If you’ve made it this far, thanks for reading. Any responses greatly appreciated.

X

[Beclp]

Hey x I’m just read your story and wanted to reach out and let you know you are not alone.Ivf can be a cruel ride and such an emotional time especially when you are not getting the care you expect.

I am in Australia so I don’t know how the system works there specifically but if you are at a private clinic it sounds like you are not being looked after properly at all.

I’ve done 5 rounds of ivf. 3 at one clinic where the specialist was not great but the clinic and nurses were amazing and so caring.

We changed clinics to a specialist who has a lot more experience but we can see the difference in the care and compassion we receive.

This clinic seems much more business like. So I’ve seen what both sides can be like.

However, they definitely give us follow up consults after each cycle and you should definitely be getting that. You are under their care and they should be making sure you are ok after your procedure.

You may get a better response if you write an email to them expressing how you feel and hopefully they take it onboard.

Best of luck 💕

[katiehopeful81]

Hi sorry you are going through this. I had a disaster first round which was on the NHS and full dose maximum stims. I was also 40. I switched to a different clinic (had to anyway as was only funded for one NHS go). I chose a clinic that does mild IVF as I wondered whether the high doses were affecting my egg quality. I also did three cycles batching with them to increase my chances. I would recommend this approach. It cost us around 12k. I’m currently prepping for my first FET but I managed to get 5 blastocysts which is a hell of a lot better than what I achieved on the first round which was maximum stims.

I would recommend you change clinics. I would not be happy with that at all. Do not spend any more money with them. Request your notes now by writing and follow it up by a telephone call next week. Start to consider your next move. Happy to be PM’d x take care

[jengi]

Awh lovely, it’s such a tough journey. You are doing amazing and I admire you for doing this all by yourself. if I’ve understood correctly you now have four mature eggs frozen? I too have low AMH so I understand the battle & I think where you are at is great place to be. What supplements are you on or what advice have you been given to try increase your quality.

As for the care from the clinic, I think they have let you down. If I were you I’d write a formal letter of complaint and ask for some compensation for the stress, lack of care and lack of professional conduct. Would you be willing to move you eggs to another clinic?

I empathise as i also had issues with my clinic but at the end of the day I wouldn’t risk moving our embryos. I wrote a strongly worded email and did lots of counselling so I could move on emotionally and have a more positive mindset about the clinic as we still had to go through transfers there as I wasn’t prepared to take the risk of moving our embryos.

It is a tough journey especially when we have high hopes for good egg numbers at revival. I had to learn to grieve for my low AMH result, low egg numbers etc. Counselling was my life saviour. On top of this having problems with the clinic made me feel even worse, i trusted the professionals to give me the best care possible and rightfully expected this given how much we were paying. I felt let down and violated. I know that’s a strong word but it best describes how I felt. Once trust breaks down it is so hard to move forward. I worked hard to build my trust in our clinic again so I could move forward with transfer.

Feel free to PM me if you want to rant further.

[MrsOrangejuice]

I think a lot of clinics, NHS and private, can be pretty bad and even with the good ones you'll probably hear horror stories or complaints. But then there's acceptable and not. It seems like you've already raised issues and used the clinic's complaints procedure, so if you're not happy the next option might be so threaten to contact the regulator if you don't get some answers and resolution. Whether or not you do then contact the regulator is up to you but just the threat might be enough to get their proper attention. Also as others have said, request your full notes in case you do want to change clinics or get a second opinion.

This whole process is stressful enough and if you've spent a lot of money and feel the treatment has not been good enough or poor, you don't have to just accept that. Ultimately they are companies that make a profit. Don't feel bad for complaining or asking for your concerns to be properly addressed.

[KiboXX]

I had very similar issues with my previous clinic, felt like I was always having to correct them on things. Literally no aftercare, they actually once emailed me a customer satisfaction survey less than 5 mins after I called them crying with a negative test result on OTD. Zero tact. Felt like a conveyor belt, no personal touch at all. We stayed there for three full rounds, always early transfers as low numbers and never anything to freeze.

We decided to try another clinic and give it one last shot. From the first appointment it was clear that not all clinics are the same, I felt like I learnt more in that first consultation than I had in all of my previous cycles. From start to finish, I had the same doctor and I genuinely trusted her that even if I didn’t have a baby by the end of it, I would have known that we gave it everything. One cycle with them gave me my 11 month old daughter and I’m currently pregnant again with our next frostie from that cycle.

Please don’t settle for a clinic that clearly isn’t worth your time and money. They are not all the same xx

[Tara123456]

My honest impression is that British health care is much worse than in other countries. (I have never done IVF anywhere else, but just from my general experience in other areas and from friends' experiences). For instance, in the UK it is common to be taken care by a 'team', not a particular nurse and a particular doctor. The result is that you fall between the cracks of each shift because not one person feels responsible for you. Every time you go to the clinic to have the most invasive procedures it is done by someone you have never seen before and will never see again. It makes the patient feel awful, and the result is lower-quality care. It might be worth looking into doing this in Spain or Greece.

[Fertilityjourney]

I'm really sorry you have felt so low. IVF is a tough old journey but we are all here to support you, you are not alone xx.

I must admit my first experience with my clinic wasn't great - doctors and nurses were amazing but aftercare and patient services were rubbish.

I enjoyed filling in their satisfaction survey to tell them my thoughts!! However I don't have an option of lots of clinics and ultimately trusted then.

What I would say is firstly, your ovaries aren't rubbish. You responded to the meds... I personally think your protocol needs tweaking as I have read that 300iu is the maximum dose you should be on as results show anything higher doesn't help...(but check with an expert on that!)

I am 42 and my AMH is 8 and on my second round, short cycle I got 9 eggs. 1st cycle was long protocol and I got 6 eggs and that was when I was 41.

So my AMH has decreased yet I got more eggs... (And I actually requested switching from long to short)

I'd definitely complain and request a free review as I think that's only right. And I would also speak to other clinics to get a second opinion on how they would change your plan, etc. so then you have options.

Hope you get some answers soon . Xx

[NinLondon]

This is ridiculous. You deserve better. We all do. Hope you can get something useful out of them