To feel exploited by private fertility miscarriage clinic - need advice

[notaurewhatusername]

Posting for traffic and really stressed about this.

I'm 8 weeks pregnant and feeling distressed about my experience with a private fertility clinic. After getting pregnant naturally, I sought their care for early monitoring. They prescribed intralipids and steroids, insisting on fortnightly visits costing £800-£1000 each. When I tried to reduce costs by arranging NHS scans in between theirs and therefore reducing visits from fortnightly to monthly, they became uncooperative and sent me some quite shitty pressurising emails.

Recent research has made me doubt their treatment approach, especially regarding intralipids and steroids. When I expressed these concerns and asked for flexibility, the clinic responded with stern emails and ultimatums about prescriptions. They seem more focused on maintaining their expensive scan schedule than addressing my well-being.

This is my 7th pregnancy after previous losses, and I'm torn about how to proceed. Should I continue with this clinic despite my reservations, switch entirely to NHS care, or seek a middle ground?

I'm worried about the right treatment and don't want to risk another miscarriage, but the clinic's behavior feels unethical. I have NHS appointments coming up and would appreciate any advice on this. Thanks

Sorry I've just looked up your clinic and seen it was opened by H Shehata - so many women (myself included) have been seen by him and, rightly or wrongly, I don't think I'd have had my baby if not for the treatment.

I’m aware so many people have different advice and it can be so hard to know which way to turn! So take mine with a pinch of salt if it doesn’t fit for you. I went to see a woman who was experienced in acupuncture for fertility issues. Whatever else she did, the experience of it left me feeling so deeply looked after and relaxed and hopeful… and more confident in my decision making.
I think it left me feeling like I was doing what I could and looking after myself and my anxiety levels. I also got (and stayed) pregnant, but I’m not sure how far (or not!) this was down to the acupuncture. I’ve also met a number of other women who have had really positive experiences of it.

This is SUCH an emotional time... I personally found fertility treatments incredibly traumatic and you have my full empathy.

However, those emails look very standard to me and the tone is that they are trying to impress upon you the importance of the fact that you have started a treatment plan and it would be dangerous to just stop.

It also sounds like the scans are a requirement due to what they are prescribing and you agreed to this in the beginning?

I'm not saying they are definitely the right place/treatment for you... but those emails wouldn't worry me at all.

Can you ask your GP to prescribe you the steroids? If you explain and show them your protocol from Dr S? After 7 miscarriages they might help you out. My Gp has been prescribing all my meds except intralipids and hydroxychloroquine. I go to a clinic called Cherish is Sutton Coldfield for my intralipids and scans (£260 for both). I was with CRP but I couldn't afford the protocol via them. I'm now almost 13 weeks after 3 missed miscarriages and things seem to be going okay. I would try to stick with the protocol somehow if I were you. So many ladies have success with steroids after recurrent losses. And the babies seem fine. Hope you figure something out!

Thank you so for this advice. Because me and DH are in the thick of it, perhaps we are interpreting things more sceptically.

Though I do also get concerned even Tommys charity are now debunking some of things I've been told.

This is very annoyingly stressful just not knowing who to trust.

I also got conned a few years ago by a doctor who told me I needed a 5k operation ti fix my issues which I did. And turns out a local consultant said every patient gets the same advice from him! Funny that.

So I suppose I'm naturally sceptical due to history, being passed pillar to post not knowing who's on side and who's against me.

Hi OP if you go down this route expect conflicting advice I had full immune treatment womb scratch, ivig, intraplips, steroids, clexane, intramuscular progesterone, the malaria tablets.The nhs were not happy but did support me stay strong and go with your heart there is no right or wrong answer unfortunately. This treatment is highly controversial lots of fertility clinics won't offer it HEFA and the nhs do not support it. I looked at it as no harm done and minimal risks I'm sure the ivig and intralipids stop after 20 weeks. If you do want to stop the treatment seek medical advice as the steriods will need to be tapered off.

Hi Op. I’m sorry you are having a hard time.
I must admit I don’t find the tone of those emails at all bad. It is completely expected that they would want to follow their protocols. I don’t think the ‘middle ground’ you suggest in your OP exists in such circumstances - you either follow their guidelines or you don’t, and if you don’t, they are completely justified in not continuing to prescribe for you. The quality of a scan report is entirely dependent ont he skill of the operator, and it’s not unreasonable they would want to do their own. I realise you are in a very tricky situation. Take a deep breath, perhaps speak with another independent consultant to get a fresh perspective, and ultimately decide if you want to stay under the care of the clinic or not. You don’t need to make this decision right this moment. Sending positive vibes x

@Iggi999 yes, the first unexpected pregnancy and the first under these protocols.

@mummytrex thank you congrats to you too and a second opinion sounds sensible. I have to make decision if I'm attending the scan for this week as I'm then on holiday for a week

@Misty999 @NCObv thank you, everyone has been so helpful I appreciate it x

you mean you work there, since the OP is < here >?

Im so sorry this is do stressful, I know what you are going through. Its so hard to balance your emotions and options.

It does appear they are simply asking you to follow the care plan you agreed to. They can't just give out drugs with no monitoring.

Only you can decide whether to continue treatment but considering you've already started it I'd see it through.

I had 7 early miscarriages and on my 8th had steroids and intralipids. I had regular private scans until 15 weeks. Once I transfered to the NHS I was put under the nhs consultant who said my only option under the NHS was full Ivf. They said my treatment was hocus pocus.

That baby is starting secondary school next week and I'm so glad I took the route I did. Who knows it might just have been meant to be, but it certainly didn't do my baby any harm.

Good luck however you go ahead.

@DDivaStar thank you, I just don't get why the NHS are so down on it, I understand they can't endorse it but to say it's hocus pocus is troubling

No, I don't work in fertility.

Here meaning OP is already on steroids.

OP I've used this clinic before and felt the immense pressure to attend the daily blood tests and weekly, sometimes twice weekly scans. In the end I requested my medical file and went elsewhere to a lovely consultant. I can pm you further details.

That was my main concern with the emails. It's really quite bizarre to claim that GDPR dictates clinical practice, and it does make you wonder about how genuine the rest is.

@hotsauce100 if you wouldn't mind I'd really appreciate it x

@ClockwiseHoneysuckle glad I'm not the only one who picked up on this! Thank you

Because the NHS can only recommend treatments which are recommended by NICE, which will only recommend a treatment when there is a large evidence base and it's proven to be cost effective. Alot of the NHS staff won't probably have even looked at this evidence. Dr gorgi has some good videos explaining this if you search for him. He trained with Dr. beer who a previous poster has referenced his book. But basically saying that these treatments have good results if you give them to the right subsection of woman eg those with high natural killers cells and evidence of an immune system problem.
Don't quote me on the exact numbers but something like 50% of women who undergo NHS testing will be told they have unexplained infertility or unexplained recurrent miscarriages. Its not that these woman won't have a reason, it's that's the tests aren't picking up the reason. Private immune testing brings the stats down to something like 30%. I would put money on these tests being common practice in the NHS in 10 years time, but it takes that long to change practice.
A good resource for medications in pregnancy is BUMPs. These treatments don't have any research to say they are harmful in pregnancy, they just don't have enough evidence to definitely say they aren't. Except for steroids, read the BUMPs page.
But good luck with everything. My sister is going through all this which is why I have spent hours reading about it. X

@Asdfghj7 thank you so much x

My treatment was some time ago, it was very new. The consultant was an older gentleman who didn't seem open to any treatment beyond the standard ivf.

I went with my gut feeling that this was our chance. The nhs offered little option for us.

Only you can make the decision of how to proceed. Obviously I'm biased, but I do generally believe the NHS is a a long way behind private medicine in alot of treatments due to red tape and licensing (necessary obviously).

Op you’re spiralling and I totally get why given so many losses. The time to decide you didn’t like the protocol was before starting. And I completely get that they won’t give you off label drugs without monitoring, surely it would be irresponsible not to monitor?

I think the GDPR point is short hand for saying they can’t access your NHS records and the NHS can’t access the clinic’s records so you can’t mix and match because nobody has the full picture. Which is fair. So in your shoes I would continue for now whilst looking for a second opinion from a very experienced specialist but even then unless they think the drugs are on balance negative to YOU and YOUR PREGNANCY specifically (as opposed to possibly risky to some in this population in general) I would think very hard before stopping at this stage.

OP, I’ve had x10 IVF cycles NHS and privately abroad that resulted in 5 losses and 2 live DC.

All I can say is it may look expensive and hassle, but in the greater scheme of things this is a blip that all being well you will be grateful for.

God forbid, but if you stop treatment and miscarry, you’ll forever kick yourself as to why as you’ll never know if stopping was the cause.

I wish you all the best, I know how awful this is.

PS Emails seem fine to me.

I would explore what made you decide to try and reduce the cost/frequency after signing up with them, and what has then made you decide to do in depth research on them mid treatment.

Do you think you are generally getting the fear that this may not work? Does it feel easier to withdraw at this point than spend the money and it not work?

Their emails are polite and clearly explaining why you need the scans, and also highlighting a risk to your health.

It's awful that you were previously scammed but that doesn't mean that's what's happening here - and you seem to be going out of your way to prove that the clinic you chose isn't now legitimacy.

I'd really try and work through and work out at what point your feelings changed. Did you not believe that the visits would actually be required? Did you not calculate the costs? Etc.

And all of this is said with love and tenderness - it's understandable that you're spiralling here but try and follow your own logic backwards.