Have my IVF clinic been neglectful?

[Cariad82]

Bit of background: I've had unexplained bleeding between periods for about 12 years off an on. Various investigations, no cause ever found but told it was nothing sinister. My mum has bad endometriosis and I have suggested to a couple of doctors maybe I could have it too, but always been brushed off as I don't exhibit enough other symptoms.

Fast forward to a couple of years of unsuccessfully TTC and being referred for IVF. At my first consult I told them about my bleeding between periods and that mum has endo and was told it's not likely to be that. All test results in normal range so started first cycle. Difficulty seeing my ovaries on scans but they weren't sure why. Then at egg collection I got no eggs and they wrote in my notes the procedure was 'technically difficult'. I then did 2 more unsuccessful cycles and got 2 eggs second cycle and one egg third - each time less than expected. Each time they wrote In my notes about it being technically difficult and the doctor told me himself he hadn't been able to get to one of my ovaries at all during one of the collections. I had also been asked by a sonogropher if I had scar tissue from a previous op or anything like that because of difficulty seeing my ovaries, but I've never had an op so told her no.

At each review appointment I have asked repeatedly if there are any other investigations I can have so we have all of the information we can possibly get. I was told no, we have everything we need.

Prior to my last review appointment my husband and I talked about it and decided we needed to press to get the unexplained bleeding investigated because it seemed the only obvious thing that was wrong. So I did some research and found out a laparoscopy and hysteroscopy would be the best option. When I went in to my review I suggested them and my consultant reviews my egg collection notes and agreed due to my technically difficult collections. He wrote me a referral to an NHS gynae.

I went to the gynae and he examined me and removed a polyp he could see on my cervix and also said I felt 'nodular' which could possible be endometriosis, so he agreed a lap and hysteroscopy were the way to go.

I had both procedures yesterday. They found stage 4 endometriosis. My rectum and uterus are fused together and I have patches of endo in my abdomen. There are adhesions all around my ovaries reducing their mobility. I have now been referred for an MRI and will need further surgery at a specialist endo unit.

I am in a bit of shock that it's stage 4, and that my suspicions were right all along, and that I have been ignored. I'm 37 now. Time isn't on my side. All of this time has already been wasted and now I'll have more time to wait for more surgery.

I feel like my IVF clinic should have picked up on this. I should have been referred for a lap much sooner. Am I being unreasonable? Overreacting?

I have to do 2 more cycles with them because I have pre-paid. I'm just so disappointed and feel like I'm not in good hands any more.

This is simply not good enough. So this is a private clinic? I'm incredibly shocked they waited so long for a hysteroscopy. I would absolutely complain and ask for your money back as you now have no trust in them, how can you continue with more cycles with them? So sorry you've been through this.

The bar for negligence is set quite high in medicine. Because they weren’t actually looking for a diagnosis at all I wouldn’t be inclined to think that you have any case here. You could argue that there was a failure to refer but given that they did refer you eventually and everyone else failed to refer you in all this time it (which suggests that it was reasonable not to - of course everyone may have been negligent) would be unlikely to be successful. Your claim would probably fail on causation, you haven’t been in contact with them long and your symptoms far outdate your contact with them. Even if they had referred you immediately you would probably have had stage 4 already. If you are interesting in legal action the first thing you need to find out it how likely it is that the delayed referral from them has caused you condition to get worse.

I am in a very similar position.

We were recommended by a NHS clinic for IVF without - we feel - fully investigating the cause of our unexplained diagnosis.

The private clinic who we were referred to aren't there to make a diagnosis but to treat the infertility that had already been investigated.

So for us, the initial investigations and lack of diagnosis is the problem. Our gynae who is operating on me this week is horrified that I haven't had my tubes tested.

Years ago before we started all this my GP wasn't interested in hearing about my periods, so that was a BIG opportunity missed when I initially discussed us struggling to conceive and having very painful AF. We are planning to write to our CCG stating that we feel like we have been mismanaged which has lost us significant time and caused much stress.

After multiple fails, it all feels too much. Like you, we haven't produced many eggs and my ovary seems to be behind my uterus, probably due to scarring but time will tell.

There is much disagreement between IVF and endo specialists whether it's worth having the surgery but we don't feel like we can continue in this journey without having more info.

Often ladies are referred for IVF before a proper diagnosis is confirmed. A lap and dye should be standard but it is more expensive to do surgery than IVF so I guess that will explain it.

Sorry you are going through this. It's totally shit.

Hi, I have stage 4 endometriosis and was told that IVF was my only chance of conceiving. I was offered no treatment as I am pain free and had no real symptoms. A experienced doctor who scanned me, guessed that I had endometriosis because my womb and ovaries were quite fixed, this was confirmed by further investigations. I guess the question is, would your IVF have been more successful if they had made a endometriosis diagnosis earlier? Possibly not, because as in my case IVF was my only option. I wish you all the luck in the world. Hopefully any treatment for your endometriosis will improve your chances with IVF. My IVF worked with stage 4 endometriosis, so I hope that helps you a little.

Thanks for sharing @alphabill, your story gives me (and hopefully the OP hope). Can I ask how many cycles/transfers you did before your BFP and how old you were?

My gynae said that 40% of her stage 4 endo patients who have it excised go on to have a pregnancy within 12 months of the procedure.

Also, hopefully getting on a more tailored protocol will help (I've been on a short protocol which I believe is more suited to endo patients).

Thanks for the replies everyone. It's really good to hear from you. I just don't know what to think. I feel very overwhelmed today.

@LillyLeaf - yes private - Care in Manchester.

@BogglesGoggles - I'm not looking to take legal action. I don't think I could handle the stress on top of everything. I more just feel wronged in a way - I went on and on about wanting to make sure all possible investigations were done so we had all the information. I said regardless of cost. And they basically ignored me, even after 3 cycles which had obvious abnormalities. You pay them all that money and expect to be in expert hands and you're supposed to trust them and I feel like I just can't now. And I've been such an advocate for myself and done so much research and pushed for answers - what about all the people that don't do that for whatever reason and just blindly put their faith in the doctors knowing best and doing best?? They're not getting the treatment they need either. It's f'd up.

@FingersXssd83 - Thank you for your story. You're right, we're in a very similar boat. It's a valid point that the ivf clinic is just there to treat the already diagnosed infertility. But at the same time surely they could have mentioned at some point that I might want to consider a lap and hysteroscopy?? I suppose, like you, the main fault lies with the fact I was diagnosed as 'unexplained' rather than the NHS fully exploring the infertility and giving me the laparoscopy I needed. I have mentioned my unexplained bleeding between periods to my GP several times and also to the gynae when I went for a colposcopy after abnormal smears. Then again to the gynae I was referred to for infertility. They checked my tubes and ran all the usual bloods but no mention of a hysteroscopy or laparoscopy. The bleeding has never been explained or resolved at any stage since it first started 12 years ago. I know that operating on the endo may not resolve anything IVF wise - the problem could still lie elsewhere. But I feel like I want to try. At the very least they may be able to actually reach my ovaries during egg collection once they aren't covered in adhesions any more and I may get more eggs and so have more chance.

What do you feel you will get out of writing to your CCG? Is it mostly to just make the issue known? Im wondering if I should do that too.

@alphabill - thank you for the success story. Perhaps if the endo had been diagnosed years ago we wouldn't be in this boat, but who knows. You're right - maybe it wouldn't have made a difference. Do you mind me asking how long it took you to have a successful cycle and we're there any major issues with your cycles - poor response etc?

Sorry for all the shit everyone had had to deal with. This stuff is hard and unfair.x

@FingersXssd83 - our posts crossed! I want to know more about the successful ivf too. The 40% statistic isn't great but it's not terrible either. The good news is the surgeon couldn't see any obvious endo on my ovaries or womb - they appeared normal, although she couldn't see the underside because they were stuck. I need an MRI for that. I've done short protocol for 3 cycles now. I'm a poor responder generally (they say they don't know why), but my egg collections still produce less eggs than predicted from my scans - mostly due to inability to actually reach them.

I think that’s wise. Wouldn’t ever recommend a medical negligence claim unlesssomeone had an axe to grind and a lot of money to burn. If you are looking for someone to blame I would blame the British medical establishment. The culture here is that doctors don’t listen to patients (more so when it comes to ‘women’s issues’) and only refer when they are convinced something is wrong (despite not being in a position to know hence the need for a referral). This would never fly where I am from (not least of all because it’s easier to sue for negligence there). You’re right, it is fucked up. I hope your treatment goes well.

Morning @Cariad82

I’m at the same clinic (what Dr are you with?) and I think they would generally opt for tests that would enhance IVF not necessarily aid mechanical diagnosis. However, I do think that we need to be better informed and them checking tests and explaining options would be very helpful. It’s almost like patients have to do the leg work to get the best treatment, but we’re not experts and researching takes time and I can imagine it being really difficult for some, which is very unfair.

We are writing to the CCG hoping it helps thorough investigation before an ‘unexplained’ diagnosis is made and ladies are put on the IVF train.

I’ve had exactly the same issue in that I have good AMH but they don’t get many eggs and they really struggle getting any from one ovary which is behind my uterus.

I‘ve had an MRI and that didn’t show anything untoward but I’m preparing for a bad diagnosis tomorrow as the consultant said that 40% of Stage 4 endo doesn’t show anything on a lap.

I keep myself positive by saying that at 3 failed cycles, you are more likely to fail than succeed, hopefully with a few more goes - and after a diagnosis and being put on the correct protocol - it will work out eventually. Many ladies with stage 4 endo do get pregnant either with IVF or naturally, let’s hope we are in the lucky group.

Hope you are feeling a little better today ❤️ x x

Hi @FingersXssd83

I can't believe I'm speaking to someone who has had the same problem as me. I've felt like a bit of a freak to be honest - I can never seem to find any similar stories to mine on any forums. People with poor response usually have a reason, like low AMH. I'm really sorry you're going through the same thing. And same clinic too - small world isn't it... I'm under [Name redacted by MNHQ]. I've found him to be a bit dismissive of me when I suggest new things to try. I know that he's the expert, but I just think if something's not going to do any harm then what's the harm in trying it? It just might make a difference and it's me that's paying, not him.

I've had the full level 1 immune testing, the Greek infection tests and karyotyoing done - all from my own research and my own decision. I am now also taking various supplements. I am also having steroids, anti-coags and extra progesterone next cycle, which will be a short protocol again. Again all suggested by me and agreed to a bit begrudgingly by [Name redacted by MNHQ]. The general vibe I get is that he's internally rolling his eyes at me and agreeing with things to shut me up.

I had never really heard of a hysteroscopy and laparoscopy until recently. I started researching how to find the cause of unexplained bleeding and then realised it would make sense for me to have them both. I then found out that there was the same technical difficulties specifically noted for each egg collection and they'd also never managed to do a 3D scan of my uterus because it was too hard to see on the scan. I thought they had managed it ok at the time. So that made me angry that further tests hadn't been recommended to me, especially since I've specifically asked several times if there's any other investigations I could have.

I think I will write to my CCG too. Mine is Trafford. Maybe just making someone more aware of the issue will filter down and get better treatment for other women in the future.

Do you mind me asking what your protocol has been and what your age / AMH is? Just wondering if we're being given similar protocols. And have they just kept you on the same one for each cycle?

Are you having a lap and dye today? Please let me know how you get on. The stage 4 diagnosis was a lot to take in for me. Thinking of you.X

[Message edited by MNHQ to remove identifying names]

🙋‍♀️ freak here too.

Age 35 AMH 25 and AFC 16. TTC 5 years and referred for IVF due to MFI but count has now improved and is 28 million so we're now unexplained I guess.

Has x3 egg collections and x4 transfers but not even a whiff of a BFP. Thoroughly fobbed off by clinic who just tell me it's the odds of IVF. Clotting bloods have come back normal but that's the only investigations run by the clinic. I have an 11 year old caesarean scar and inspite me begging for hysteroscopy/lap etc all have been refused.

I'm so angry that I'm having to investigate, research and plan my own care and that they've wasted a year of my life and put me through the horror of four failed transfers.

I'm not sure which was the worst cycle out of the second or third! Second where they triggered me on day 8 meaning that of the 14 eggs they collected only 3 fertilised. Or third where they couldn't get to one ovary so punctured my uterus to get some out resulting retrieving 3 eggs of which then 2 fertilised.

This process is driving me insane I think. I'm going to have the uterus biopsy to look for killer cells there and the Greek bloods. Not sure what else to do. How can there not be anything wrong??? I've had 5 embryos transferred 3 of which were 4BB blastocysts and every single one has utterly failed.

@Cariad82 which Greek bloods did you have if you don't mind me asking?

Hi @MrsC2018 - welcome to the really depressing club!

There must be so many people who feel they aren't getting the best care. It's so unfair and frustrating. And I feel really angry like you that I'm the one putting all my time and energy in to researching and figuring out what to do next and then having to push for changes. They don't tear you like individuals I dont think. It sounds like they've made a right mess with your cycles too. Sorry you've had such a hard time.

Who won't refer you for a lap and hysteroscopy? Is it your GP refusing to refer you to gynae (who would then be able to order them for you), or is it the clinic refusing to recommend that you have them?

Have you considered any sort of genetic screening to investigate the repeated implantation failure in case there's an issue there?

Have you had all level 1 immune testing? Most of mine I managed to get through my GP - I think I just paid for 2 of the blood tests. All came back ok for me. I haven't had level 2 because of the expense and because the clinic have agreed to empirically prescribe steroids for my next cycle, but I'm not ruling out having them in future.

I had the Greek tests via Serum - the '10 in 1' test plus the hidden C test. They found ureaplasma which they prescribed antibiotics for.

When you say uterus biopsy are you talking about the Coventry one? I considered having that but my clinic are going to empirically prescribe the drugs I'd get if the test came back with issues anyway, so going to do that and save some money at this point.

In a way I'm relieved to at least have a diagnosis now, even if it's a crap one. But that's assuming it is actually the endo causing the infertility. There's still a chance it's not I guess. Now I have a lot of research to do on a brand new topic. Tearing my hair out already...

Hi Cariad82

Sorry you didn't get the care you deserve.

The Care Quality Commission regulates healthcare. They inspect services and force service providers to improve care.

If you want to let them know about your challenging experience, here's a link:

www.cqc.org.uk/help-advice/your-stories/declare-your-care

Good luck with your surgery and further IVF x

I know @Cariad82, although we’re in a shitty situation, it’s good to talk to someone who can properly relate! I have the same doc and think he’s just evidence based so when I start talking about stuff that he knows isn’t going to have an impact - all of the unproven tests - I get it, although he’s had my NK Cells tested and is treating my empirically for other issues (last cycle I was on Inhixia, steroid and aspirin). After we told him we were seeing a gynae and booked in for a lap, he was supportive. He probably thinks that it won’t really change the IVF outcome though, I dunno, but we trust him. He’s open to the EMA and EMMA test so we may go for those in the future.

I had my lap yesterday at a BSGE Centre, I have mild-moderate stage 2 endo. Would have been mild as it’s superficial but it’s everywhere. I also have a blocked tube :( She excised it all apart from on the ovary which was ablated. She has also stitched my ovaries to my abdominal wall to keep them out of the way while my insides heal to try and limit any adhesions. She showed me all the photos, looked awful.

Hopefully when they go in again on you, they can free up your ovaries to give you a better chance of retrieving more eggs for future cycles. When and where will you be having your surgery?

I definitely think it’s the fault of the GP and whoever did our original fertility tests (I went to St Mary’s) who didn’t investigate thoroughly. Getting rid of the endo would have really helped us to conceive naturally as well as through IVF, it’s a bloody joke! I feel that ‘lady problems’ just aren’t taken seriously. I would have paid privately to get a proper diagnosis, just feel like we’ve had three failed cycles which I would have felt better about if everything had been done properly at the start. We have two day 3 frosties to transfer after I’ve recovered from my op. Going to ask about down regging for it, to calm any inflammation down further.

Definitely agree with writing to CCGs. We are going to ask for more cycles because we feel that we have been mismanaged which isn’t going to happen and let’s be honest any free cycles in our areas will probably be axed soon!

I’ve been on a short protocol (AMH is 16, 18 AFC) and here’s how I underperformed:

Cycle 1 (Oct 18): 10 eggs, 5 mature, 3 fert, 2 blasts, 1 tx BFN (no frosties).

Cycle 2 (Jan 19): 5 eggs, 4 mature, 3 fert, 3 blasts, 2 tx BFN (no frosties)

Cycle 3 (April) : 6 eggs, 4 mature, 4 fert, all frozen on day 3 (due to suspect endometrioma). Wasn’t a cyst so transferred two in July BFN, hopefully do next transfer in Nov (so this bloody cycle will have gone on 10months!!!!).

Cycle 1&2 was menopur, buserelin and cetrotide then they changed the stim for the third to Gonal F and can’t remember the trigger.

I’ve been reading about long cycles being better for endo, if/when we do another collection, I’m going to request it.

I’m 36 hun, I wanted to TTC when I reached 30 but DH wasn’t ready so we started age 33 and loads of friends are already on their second baby since we started, it’s heartbreaking.

How are you feeling today? I started to look at surrogacy a few weeks ago which has made me feel much more positive that it could happen even if I can’t carry.

The things that scares me the most is that staging doesn’t seem to be a predictor of success. They don’t know why stage 1-2 can’t conceive but stage 3-4 can. Keep telling myself that is has to be positive having this new information but then I’m still not pregnant after 3 years/cycles so who knows what difference it would have made.

Sorry for long post!

xx

Shame you've had such a rough time FingersXssd83 I bet your husband wishes he had agreed to start when you first requested it. Good luck next time!!

I thought it was standard to have hysteroscopy and lap before ivf?

Everyone I know did

But maybe it’s different in different areas

I’m sorry to hear of the troubles you are going through.

I also had a lap this week. I picked a consultant who specialises in both endo and IVF as a precursor to asking “what should we do” & have family history of endo. He saw a small endometrioma & I had ovarian inflammation markers in my bloods so he recommended lap before IVF.

It turned out I had Stage 3 and sounds like in similar places to yours @FingersXssd83

After the lap my consultant said he frequently sees spontaneous pregnancy in his patients after a lap for endo. This paper is supportive of lap before IVF as well - I agonised for weeks over the surgery as I was concerned it may jeopardise our chances of IVF (planned for December) being successful.

www.jmig.org/article/S1553-4650(17)31095-6/fulltext?fbclid=IwAR1vQ6HLgDhZQfKhPGOrgVDNcQw0lLQRoS4YrZ8Gpfsm1eBHZHExAaKv47g

@FingersXssd83 - I'm feeling much better physically today thanks. Head is still battered though! Sorry to hear about the results of your lap. It's good that she managed to do some work on it there and then though. I was really disappointed that my consultant couldn’t do much for me at my lap. More waiting.

I’ve been referred for an MRI and to the SMH BSGE endo unit for my surgery. I wIsh my initial lap had been there because maybe they could have done more for me during it then, but I only found out they existed earlier this week. I was told there’s a long wait for NHS MRI’s though, so I have made an appointment for a private MRI and a follow up private consultation with one of the consultants who works at the SMH unit. I’m told once he’s seen me he can refer me back to the NHS for the actual surgery. I’m hoping that will bypass some of the initial waiting time. I’m just so conscious of all the time we’ve wasted so far. There’s also a Manchester endo support group that meets monthly and apparently a lot of the attendees are under the care of the SMH unit so I think I’m going to go to the next meeting to see if I can learn anything useful and pick up any tips for dealing with the SMH unit.

I’ve never heard of the EMA and EMMA tests - I will look in to them. I have SO much to learn about endo. It’s quite overwhelming. I have been on the same protocol and drugs for each cycle as you were for your first 2 cycles. I was told that due to my age (37) and AMH (14) that my ovaries probably wouldn’t bounce back from a down reg. I’m going to look more into down regging now though and discuss it with the clinic. Weigh up the pros and cons. We don’t have anything in the freezer (only got 3 eggs over 3 cycles, resulting in 2 transfers and one embryo it good enough to freeze) so next cycle will be another fresh one.

I read about a new study in to the link between endo and infertility and apparently a lot of women with endo don’t produce a certain protein in their womb, and without the protein embryos can’t implant. That may explain why severe endo doesn’t always mean infertility but mild endo can and vice versa. I am going to find out if I can be tested for this protein. We have had 2 transfers and both were chemical pregnancies. I’m so worried implantation is the main issue for us. If you don’t have this protein there’s no cure, but at least we’d know what we were dealing with. I also looked at surrogacy recently. It’s a lot to get your head around and I’m not sure how I feel about it yet. I also feel that by the time we tried everything else and decided on surrogacy my eggs would probably be too old and crap to make a viable embryo.

We only get one cycle with our CCG. After our first cycle resulted in no eggs I wrote to the CCG to ask for the rest of the money they would have spent on our cycle if I’d have got eggs. I had quite a lot of back and forth but eventually they agreed to fund a whole new cycle, which is amazing. Just goes to show sometimes writing to them and pestering them pays off! You’re right though that the fault lies with the GP and consultants we were referred to. It’s a total joke. I feel so angry about it all but what good does that do me...

@Blondeshavemorefun - it should be standard!! I’m going to have another look at my CCG assisted conception policy to see if it’s mentioned, but I suspect not. It’s probably more postcode lottery crap. I just wish there was a one stop manual for infertility. I know the information is out there if you look for it, but sometimes you don’t know what you should be looking for and find out too late. And you assume the professionals will tell you what you need to know, but we all know it doesn’t always work like that.

@jcurve - thanks for that info. Very interesting. I’ve also read that IVF after a hysteroscopy leads to increased success rates. I had a hysteroscopy and polypectomy on Monday along with my lap. I am due to ovulate this weekend and currently trying to find something on google to say it’s ok to have sex now. Not that I remotely feel like it (and husband is very not keen so soon after op) but I really really don’t want to waste a whole month. So may just brave it!! Hopefully you have some luck after your lap. You never know - fingers crossed for you and for everyone else.

Sorry for my mega long post too. This has been so helpful to me though - thanks everyone for taking time to post.x

Im at St Mary's too. How depressing that we've all had such a shit time with them.

I also started IVF without any investigations and I'm hopping mad that they won't refer me for a hysteroscopy or lap, I've checked the NICE guidelines to see if I could complain to the CCG about st Mary's and annoyingly it states that those investigations are not supported before IVF treatment.

I'm going to the care open day at the beginning of October to figure out if I should have another cycle. Seems like madness to keep trying when we've so spectacularly failed so far.

Got an apt with the embryologist at st Mary's at the end of this month as I have the two embryos frozen on day 1 from the last round where they punctured me. Not sure I'll get through that apt without crying in frustration, I'm just so sick of them all.

@Cariad82 @FingersXssd83 I have a decision to make;
Do I have this last transfer at St Mary's or do I transfer them to Care to have it there?

Also just to say that I've had the same medication and always a short protocol too - Menopur, cetrotide with the trigger of Buserelin (app art from the last one which was Gonasi).

Hi @MrsC2018

Sorry you're having a shit time too.

I assume you've now run out of NHS cycles and are paying anyway? In which case I would personally leave St Mary's. I've not actually had any IVF there - I was initially referred there for my first NHS cycle and it was a farce. They lost my file, I could never contact anyone etc. I was so stressed. So I got in touch with my CCG and eventually they let me transfer my cycle to Care, which were a breath of fresh air after St Mary's. I had one nhs cycle there then bought a package of 3 cycles. I've had 2 of them so far. To be honest I didn't have a bad word to say about Care up until he last cycle when I found out that the issues with my egg collections were actually highly unusual and should have been investigated earlier. But like earlier posts have said, it's not totally their job to investigate the issue I suppose. Generally I would recommend them. I've now been referred to St Mary's to deal with my endo but hoping to have a better experience with a different department.

Regarding the lap and hysteroscopy - this is controversial advice, and fortunately (or unfortunately depending on how you look at it) I didn't need to do it but I know people who have, you could always just lie. Go to your GP and tell them you've had unexplained bleeding (or any other symptom that you would need a lap to investigate - check endo symptoms - pain during sex, extra painful periods, painful bowel movements etc). Get them to refer you to a gynae for it and then tell the gynae the same thing to get you your procedure. Tell them you're worried it might be endo because it runs in your family so you're aware of the symptoms. There's no other way they can properly diagnose endo besides a lap so it'll be the only choice really. Maybe not massively ethical but the best shot at getting your investigation...

I'm reading through some of Robert Winstons responses (all really interesting). This one is particularly relevant to our thread so thought I'd share:

genesisresearchtrust.com/askrobert-questions-and-answers/laparoscopy-hysterosalpingogram/

Thanks @Cariad82 I appreciate your expertise! This last frozen transfer is my last funded, I am lucky enough to have been one of the last through with 3 funded cycles. Do you mind me asking how much your package cost with Care?

I've got one last apt with the embryologist in a couple of weeks which will be my last face to face with someone from the clinic so I'm going to try again to get him to refer me but if that doesnt work then I'll go see my GP. Can't believe I've not thought of that!!

I hope your experience with St Mary's gets better, in fairness the nurses have been so lovely and if I'd got pregnant then I also wouldn't have a bad word - it's more that I feel completely ignored and my lack of a positive result only serves to justify to me that I'm correct and they're wrong. It's hard to describe beyond that I know there's something wrong with my uterus!

Thanks also for the thoughts on the Coventry tests, I'll speak to Care about whether it's worth the test or just treating me. Do you not want to know though?!

Hi @MrsC2018. After my one funded cycle went so disastrously Care recommended that my next cycles be 'natural modified'. They offered me a 3 cycle ICSI package through then that cost £10k. Then the cost of drugs on top of that (approx £1200 per cycle). The only difference in one of my 'natural modified' cycles to a standard cycle is the amount of stims I'm given - my first traditional cycle I had 450 of Menopur than my last 2 natural modified I've had 150 and 200. Everything else is identical and the package includes embryo glue and embryoscope. I think we've gotten away with a really good deal to be honest and the only reason I can think that they've given us such a relatively cheap option is that I was such a poor responder that they think it's less likely to ever work for me and so have put me down as natural modified because maybe they don't have to include me in their stats then? I don't know. The package is through them direct too because I didn't qualify for one of those third party funded fertility packages where you get partial refunds if you're successful etc.

If I were you I would just go and see your GP straight away and see if you can get a referral started. Even if the embryologist can and does refer you it's only going to be to the gynae that the GP would refer you to so you may as well get the process started because it can take ages. I've been lucky and went to see my GP mid June then managed to see the consultant then get my op within 3 months but only because I was constantly on the phone asking for cancellation slots so I managed to get my consultant appointment 4 weeks earlier than it should have been because then my op 2 months earlier because I again took a last minute cancellation - I only had 2 days notice of the op. If I'd have just waited for the dates I'd been given I wouldn't be getting the lap til January.

I know the feeling of just knowing that there's something not right. And I don't think your instincts should be dismissed. You know your body best.

With the Coventry tests - yes I definitely do want to just know, but it comes down to money. In the last year we've spent £12k on IVF, £2.5k on private tests, about £1k on supplements and acupuncture and now another £1k on a private MRI and consultation to try and bypass some of the wait time for my next endo op (I've just had my NHS MRI appointment through and it's not til end of Oct and then I will have to wait again for a consultation to discuss the findings whereas my private MRI and consultation are next week). We're running out of money so have to be careful about what we justify spending it on to be honest.