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Share your dilemmas and get honest opinions from other Mumsnetters.

To feel exploited by private fertility miscarriage clinic - need advice

172 replies

notaurewhatusername · 30/08/2024 17:30

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

OP posts:
Twinklefloss · 31/08/2024 08:46

OP please stop googling!

I used this clinic 10 years ago after 6 miscarriages and successfully carried to term after the progesterone, intralipids and prednisolone.

at the time my nhs doctors scoffed patronisingly at the progesterone (and everything else) but 5 years later progesterone is now gold standard nhs treatment for women who have had 3 or more miscarriages.

there is very little research on the use of various medications in recurrent miscarriage and infertility so the RCOG, NHS and HFEA guidance is understandably very conservative and cautious. Developments move very slowly (eg progesterone).

please don’t stop any medication suddenly : it’s really important to wean off very slowly as instructed.

Wishing you all the best

Ifitistobesaid · 31/08/2024 08:52

notaurewhatusername · 31/08/2024 08:38

@harrietm87 I actually started treatment AFTER a positive pregnancy test.

I fell pregnant accidentally after six years infertility deciding it wasn't happening and moving on with my life.

After the positive test I then got worried and out of desperation needing quick answers called the clinic as I knew it would be the quickest route to treatment over NHS and it was the last clinic I'd dealt with so figured the quickest way to get help.

The speed of everything, I didn't research I just wanted quick answers as previously I know with miscarriage every day counts.

Sorry I don’t understand, did you have recurrent miscarriages or is this your first pregnancy? Shehata usually treats women with recurrent miscarriages.

As another poster said, there is a weaning process to come off the steroids so either way you will have to continue taking them for awhile.

For what it’s worth I haven’t heard of anyone becoming ill while on the treatment.
There is a very long thread about him and immune treatment over on the infertility boards - think it’s been running for about 10 years. This is the current one https://www.mumsnet.com/talk/conception/5061245-immunenk-cells-pred-thread-32

In all my years reading that thread I don’t think I’ve seen anyone report that they became ill. Obviously it can happen but most people seem to be fine.

Immune/NK cells pred thread #32 | Mumsnet

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed....

https://www.mumsnet.com/talk/conception/5061245-immunenk-cells-pred-thread-32

Twinklefloss · 31/08/2024 08:56

Ahh the pred thread! It’s been going well over 10 years and had it not been for mumsnet and that thread I don’t think I would have DS here today. At my age and the number of miscarriages I’d had, my chance of a successful pregnancy was less than 1 per cent.

but the pred thread would be a good place to talk through your reservations OP (albeit you’ll find a self selecting and positively biased group)

notaurewhatusername · 31/08/2024 08:57

@Ifitistobesaid it's my 7th pregnancy. Prior to now I've had about three miscarriages and three chemicals (I lose count of the exact numbers)

I initially went to see them a year or so ago planning to embark on treatment before conception and then decided to forget having a child all together and stopped taking treatment after a few months and moved on with my life, it was becoming too negative and I'd had enough.

Almost a year later, I randomly fell pregnant naturally. So then called the clinic same day to commence something in the hopes of giving to best chance of survival

OP posts:
Cosmos24 · 31/08/2024 09:02

I'm so sorry to hear your experience, that sounds absolutely awful. It's such an emotional mind-bend to be in, because you will do anything to make the pregnancy work, but also don't know if the very things you're trying to do to help are actually dangerous. This is my experience of CRP clinic...

We have had 3 miscarriages over 18 months. With the first two, we thought it was just bad luck, but after the third we began to worry. My EPU consultant recommended Prof Shehata as we said we wanted to go private (we'd already done a lot of the NHS investigations without much exciting coming back and didn't want to wait so long for an NHS referral to recurrent miscarriage clinic thinking they wouldn't be able to add much). So I booked us into Prof Shehata's clinic. The admin team had said he would want all the investigations to be recent within the last 3 months, so in an attempt to save money, we got the standard blood tests repeated on the NHS before going (I work in the NHS so it wasn't difficult for me to arrange). Despite this, in our first appointment, he said we had to repeat them all as we'd missed one small test (one part of the thyroid bloods, which was normal 6 months previously, but this time we'd missed repeating it) and he couldn't separate out requesting that test from all of the others so we'd have to repeat them all (at great cost, of course). I did think this was a bit unreasonable, but my husband was very keen not to make a fuss so we just agreed to paying to have them all repeated. We also got some new tests done which we were pleased about - my husband's sperm DNA fragmentation and of course the NK cells. This came in total to about £3000 (including the repeated standard ones) which we paid. On the NHS results, one of my antiphospholipid bloods had come back marginally raised which he said wasn't significant and didn't need to repeat (he claimed APS doesn't cause miscarriage, which is completely false). I hadn't managed to get karyotyping done as there was insufficient tissue with the third pregnancy, but Prof Shehata didn't ask for these results so we didn't mention it.

We went for the follow up 2 weeks later, and were given the results of his tests. All of my standard repeated tests were normal (obviously) and the sperm was normal. The NK cells had two tests - one general level, which was normal, and one test that he said replicated a pregnancy like state. My level was 0.1 above the "normal range", although how he calculated what should be normal, I don't know. I was expecting him to say "great all your results are virtually normal, that's really encouraging, we don't need to do too much, but these are the options to choose from if you want to increase your chances". Instead he brought out a booklet with a really intense treatment regime which involved immune suppression prior to trying to conceive and then monthly treatments with intralipids, steroids, progesterone etc etc which he said we would be starting on now. I was honestly shocked by how much he expected us to do considering how normal the results were and asked him (very politely) if it was necessary to do such an intense regime when the results were only borderline raised. He lost his temper and was very rude, saying that we would go on to have 20 miscarriages if we didn't do his treatment regime. We were both very uncomfortable and felt like every question we asked was shot down. He was incredibly pushy, telling us what to do, instead of giving us a choice. He then gave me a consent form to sign, which included phrases like "I understand that this treatment has no evidence for being used in my condition" and also locked us into scans at 6, 8, 10, 12, 16 + 20 weeks. I asked how much they would cost (about £300 each) and if we could have some of them done at our local EPU to save money. Again, he lost his temper and said it was his GMC registration on the line, and he had to be in total control of my care and couldn't have other people interfering. I understand not trusting a private scanning place like 'window to the womb', but I have access to NHS consultant scans at my EPU which are obviously very high quality.

Anyway, we said we wanted some time to think about it, and in their waiting room my husband calculated that with all the treatment/scans/appointments it would cost around a further £7000. Like the OP said, this is not about the money - I would give all of my money to have a successful pregnancy. It is about feeling manipulated and taken advantage of. We felt we couldn't trust Prof Shehata and apart from anything I don't want that man anywhere near my vagina doing internal scans. It would also mean being on and off steroids every 2 weeks until we conceived and then for many months of the pregnancy which made me uncomfortable. So we left the clinic and said we'd be in contact if we wanted to continue, but decided over the next few days that we didn't want anything more to do with them. On talking with medical friends, we think he is driven by one of two things: 1) exploiting as much money as possible and/or 2) getting good results for his statistics - we had virtually normal results, so he probably thought we had a good chance of normal pregnancy anyway, and by giving us his insane treatment regime he could claim our next successful pregnancy as his win. He wouldn't be able to include us in his statistics if he didn't do all the scans etc.

As it happens, I'm very glad that we left - we have since had parental karyotyping done showing that it is a balanced translocation that caused all of the miscarriages. He never asked about our karyotyping results and so would never have discovered this if we hadn't gone back to our EPU consultant and asked for that test because we weren't happy with Prof Shehata. Instead he would have charged us thousands of pounds for entirely useless treatment, that might even cause harm to the baby and definitely can't be good for my body.

This is just one experience, but I would say to anyone considering CRP clinic to stay completely clear of it. We are glad we got my husband's sperm tested, but apart from that, it was a complete waste of money and we very nearly got manipulated into having unnecessary and potentially harmful treatment.

Sorry this doesn't help much in your situation, but I think it's important to share our experience for other people considering CRP clinic. I hope you can make peace with whatever you decide. I know steroids are used in some conditions in pregnancy, including extreme hyperemesis and my EPU consultant said they are safe for the baby, so hopefully everything will work out fine for you, but I totally appreciate how worried and uncomfortable this whole situation is making you.

Cosmos24 · 31/08/2024 09:09

Just to add to that, when I spoke to a friend who is a gynaecology consultant, who runs the NHS recurrent miscarriage clinic at his hospital, he said in all his years of doing that clinic he had only had 2 patients not end up having a successful pregnancy eventually (and he's in his late 50s so has been doing it a long time). He said if you keep trying for long enough, you will have success anyway, so I feel like Prof Shehata is just taking advantage of the stats being favourable anyway, and claiming it's his treatment regime that is causing it. He hasn't published any data showing his treatments improve outcomes, and if there was evidence for it, then I am sure he would have published it (he has tonnes of other publications about other things).

I get that it is hard to leave midway through a treatment plan because if things go wrong you will always regret it, but I would avoid him in any future pregnancies.

wombat1a · 31/08/2024 09:09

The emails seem fine to me, you are being given off-label drugs and they want to monitor you and the baby - to me that seems sensible. Did they ever say anything to you about being part of a clinical trial for using these drugs for your situation? The reason I ask is that to get the drug licensed for your condition would require a trial (or 2-3) and so that would come with conditions that the clinic needs to keep to in order to have the required data for sending to the authorities.

Cosmos24 · 31/08/2024 09:31

Also, not sure if this helps, but my gynae consultant friend said that he prescribes steroids for recurrent miscarriages, so I don't think they are terrible. Before we got our karoytyping results, we made this treatment plan with our EPU consultant for future pregnancy attempts:
4th pregnancy - progesterone, aspirin, heparin
5th - progesterone, aspirin, heparin + steroids

We had already tried:
1st - nothing
2nd - progesterone from spotting at 5 weeks
3rd - aspirin + progesterone from conception

Obviously now we know the miscarriages were caused by the translocation, none of that is relevant for us, but it is good to know that steroids are part of a normal treatment regime, they are not totally crazy. It's just intralipids that are a bit whacky, but general consensus from people I've spoken to is that they don't do anything at all, rather than causing harm/benefit.

Also, perhaps interestingly, I am currently 7 weeks pregnant, we fell pregnant before getting the karyotyping back, so got an anxious wait to see if there are any problems or not. We've had a successful scan at 6+4 though, so fingers crossed! Despite now knowing that our miscarriages haven't been caused by a lack of progesterone/aspirin/heparin, I am not stopping them because I'm worried that would harm the baby more (esp as we had those marginally raised APS bloods). I think particularly the progesterone is important to stay on, because I don't want to suddenly drop my hormone levels, and I would suggest the same to you if you do decide to leave the clinic. Your local EPU would be able to continue the progesterone, but I'm not so sure they would be happy to prescribe steroids that they didn't start. Having said that, it is VERY important not to stop steroids suddenly, you have to wean off with a reducing regime (this is regardless of the pregnancy, it's the same for people using them for other reasons). So if you do leave, make sure you do a reducing regime - I think normally it drops by 5mg/week.

Sotiredmjmmy · 31/08/2024 09:32

@@notaurewhatusername I say this in the most gentlest way and do not want to overly worry you as it doesn’t apply to everyone at all, but you mention several times that you are going on holiday abroad. Are you flying? Have you had any gynae incidents around flying previously? My history is such that I have had several miscarriages triggered under 12 weeks by flying and I’m not the only one, it’s a known thing. Realistically they were probably going to happen anyway but it spurred it on, or the timing of it in an unnatural way. It may be something you want to read up on and consider.

Twinklefloss · 31/08/2024 09:52

@Sotiredmjmmy i was thinking that about flying but hadn’t wanted to say it. MOST things are fine for MOST pregnant woman but when you have had repeated miscarriages you need to take a step back (the example given to me by one doctor was baths- fine for most pregnant women but I wasn’t most. I was in the half a percent who have more than three miscarriages (6 total)). I had two miscarriages on a plane and it’s not something I’d ever want to repeat.

notaurewhatusername · 31/08/2024 09:52

@Cosmos24 thank you for sharing your experience. It at least makes me feel I'm not completely crazy and that there definately IS a focus on money over genuine care for people.

I think the money comes first, the care comes secondary.

I feel very uneasy and just want to know I am doing the right things. I am worried it's now too late to involve a second party for second opinions because 1) I am finding it hard to trust anyone right now and 2) time is against me.

I have my first midwife appointment this week and also a scan at tommys, which I'm having to cancel so I can attend the CRP one as u have now realised I've ran out of fragmin and they will not remotely give me any top ups unless I attend. I'm being g held to ransom!

I'm sad cancelling the Tommys scan as it was really hard to get, and instead having to pay £300 through CRP but what I may do I ask Tommys if I can chat with a consultant there instead and run through what's been happening for some advice.

OP posts:
notaurewhatusername · 31/08/2024 09:54

@Twinklefloss @Sotiredmjmmy flying hadn't even occurred to me as being an issue.

I've done some googling and I cannot find any evidence to support it so I'll be willing to take my chances and go on the holiday.

OP posts:
notaurewhatusername · 31/08/2024 09:57

@wombat1a I never asked about trials, I never asked anything!

I honestly feel I've been naive through all this and as dr Shehata is so highly regarded just trusted everything.

It's only since I am starting to feel pressured I've done some research. Whilst I understand the protocol, I still believe they could have been more accommodating with me in terms of remote prescriptions and help etc. in my business if I'm genuinely trying to help people (which I am!) then I try my best to work around them.

OP posts:
notaurewhatusername · 31/08/2024 09:58

@Cosmos24 I also agree with you about future pregnancies, I feel this is worth continuing as I've started, and I suppose stopping would bear more feelings of regret if something happened then if I hadn't started it in the first place.

OP posts:
Cosmos24 · 31/08/2024 10:03

@notaurewhatusername Yeah I really think you need a holiday! We're planning on flying to America at ~14 weeks if all our scans go fine, so I wouldn't stress about it. The hot baths are different - babies don't like overheating and have no way off cooling themselves as they are inside you, so it can be dangerous for any pregnant women, which is why you shouldn't go in a hot tub while pregnant.

That's interesting that CRP are giving you fragmin - I asked Shehata if I could have it due to my mildly raised APS bloods and he said it would be too much in combination with the aspirin and would make me bleed and miscarry. So he's clearly inconsistent... when I looked online there are loads of studies showing heparin reduces your risk of miscarriage even without a known cause, so I think it's worth continuing that too.

I know this is super stressful and I do believe he is a charlatan, but I don't think the treatment is particularly harmful and there is a chance it is helping (were your NK cells raised? If so then maybe this is a good treatment for you?), so I would try to stop worrying about it, keep going and just enjoy your holiday. At the end of the day, the baby is doing well, so it's all positive so far. Getting a heart beat at 8 weeks is a massively positive sign and significantly reduces the chance of miscarriage once you reach that point.

DameKatyDenisesClagnuts · 31/08/2024 10:06

Hiya, I would say that the HFEA info on these drugs is over cautious. You are on them now and I'd be tempted to stay on them until you get to 12 weeks. Steroids are fairly commonly used in pregnancy to treat all kinds of conditions. Intralipids are unlikely to cause any harm.

Cosmos24 · 31/08/2024 10:06

100% Shehata is collecting data to go into publications. He doesn't need consent if he is just collecting the data retrospectively, so he is not breaking any law by doing this, but it is uncomfortable as it seems like he is tailoring his advice to fit his statistics. I have heard of other consultants in other fields doing this too, I think medicine can be a dodgy world. Unfortunately you just have to trust people to an extent though as you need access to healthcare.

notaurewhatusername · 31/08/2024 10:08

@Cosmos24 thank you so much. I agree, the holiday is necessary! It's also with quite a few couples and friends so not the one of holiday that can be easily recreated (if we're just me and DH for example). If there were studies to prove otherwise I wouldn't do it, but without evidence I don't want to rely on just superstitions.

My NK cells I'm sure were at 23% which is slightly elevated they described it as.

I've been prescribed no aspirin, just the following;

  • Intrilipids monthly
  • 20mg prednisolone
  • 800 mg Cyclogest (progesterone)
  • Omeprozole
  • Daily fragmin injections

In addition regular vitamins, omega 3, vitamin d and folic acid

OP posts:
Lemonbalm8 · 31/08/2024 12:47

@notaurewhatusername I wish you all the luck! Hopefully everything goes well and in a year you'll look back and not remember the stress and anxiety. Keep us posted! And holidays if you can enjoy would be lovely. One of the benefits of steroids is they can mask some of the symptoms like nausea, so can allow you to enjoy a bit more. At around week 7-8 I was really not up to travelling or eating any food. In any case, I genuinely hope all goes well. Recurrent miscarriages are the worst on mental health, try to take it easy as much as possible and not allow extra anxiety around things you cannot control. I know easier said than done as I am facing it myself. After 3 MCs last year, I'm also pregnant and hoping this is it.

MintyNew · 31/08/2024 12:56

Sorry about your losses op. I too had many including a late term loss. I went the private route and had an excellent experience. I have not heard of CRP before and had done thorough research. I am in London though and went with a Harley Street fertility specialist and then consultant.

You need to find a good consultant. Mine was just beyond exceptional and I could not have had a better experience given my previous trauma. He was available all the time and many times I had messaged him at night 11pm and he always responded.

Each consult was around 800 pounds though, that included tests, scans etc.

notaurewhatusername · 31/08/2024 13:10

@Lemonbalm8 thank you and congrats to you too! There really is an immense added layer of anxiety to miscarriages that it's hard to understand unless you have had them x

OP posts:
notaurewhatusername · 31/08/2024 13:11

@MintyNew thank you, do you mind sharing who it was?

OP posts:
notaurewhatusername · 31/08/2024 13:12

@MintyNew presumably you carried to term eventually?

OP posts:
Iggi999 · 31/08/2024 17:35

I thought the best results would come from having started the treatment prior to becoming pregnant - I know I was told to take lots of vitamins and start the steroids prior to conception.
The NHS recurrent miscarriage clinic could find nothing wrong and didn't have any advice at all - not even things like vitamins.

notaurewhatusername · 31/08/2024 18:15

@Iggi999 yes I should have been on things prior to conceiving - so it ought be a case of too little too late

OP posts: