I didn’t quite realise that my first version of this blog was written in 2022 which is somehow four years ago and time has literally flown! I refer to it so often when I’m giving support but have come to realise lately that times have moved forward in the last 4 years and so I thought it would be good for me to write a new version. Including all of the original basic stuff through to all of the more complex things. It most importantly the ways you can take next steps without bankrupting yourself.
Fertility & recurrent miscarriage care and treatment has definitely become some what of a circus and when you’re navigating a journey you are so vulnerable and just don’t know where to turn, who to believe and to trust. If someone had said to me if you only eat mushrooms and stand on your head for 6 hours a day…. I would have done it, when in the trenches I would have done absolutely anything to get me a baby that I could bring home.
I know lots of you like to read my blog from the very beginning and it does have so much knowledge and things that will help packed inside it, mostly it is probably really validating of all the thoughts and feelings often people darent say out loud. If your not like me and don’t want to trawl through the whole thing picking it apart I thought a blog that breaks down my views & knowledge of recurrent miscarriage and infertility in a current & up to date manner may be helpful to some of you. It’s probably going to get pretty long so I’d go make yourself a cuppa and prepare to jump into this rabbit hole…
The first time I wrote this blog I also hadn’t ever worked in the NHS and have since done a 16 month stint in a maternity bereavement team and really had my eyes opened to the red tape of the organisation. One thing I took away from my time in the NHS is that actually a lot of doctors and nurses really do want to do more for you but they are stuck within their constraints of guidelines and protocols and they just can’t without risking their career.
This however doesn’t change my view that there are many doctors and nurses that in my opinion don’t do enough, they don’t look at each individual and give personalised care, a lot of what is done is textbook, one shoe size fits all and sadly everyone doesn’t keep up to date with emerging research and therefore aren’t always specialist enough to be able to help every woman.
This is absolutely ok if you are told “I really don’t know what else I can do for you, BUT let’s see who can” it’s not talked about enough that you can be referred within the NHS to absolutely anywhere and any consultant around the country if you request it, a lot of the time it’s seen as too much paperwork, or your own gp surgery doesn’t want to use their budget and funding on it.
If you take anything away from reading this blog I want it to be this; absolutely no one in this life is going to care as much as you do if you get there and get your baby. It’s ok to self advocate, it’s ok to ask questions and to push for more, you deserve that and are entitled to it.
Although the main focus of this blog is recurrent miscarriage, for anyone struggling with infertility or unsuccessful IVF treatment it is probably quite relevant to you too, because quite often I find people find their answers in similar places and there can be quite a lot of things that relate to both. I must make it clear I am not comparing the two experiences in any way, they are both awful, isolating, painful… and all the many other words you feel.
Before I continue I will also declare two things, I’m obviously not a doctor or medical professional and everything I write is my own fountain of knowledge that I have gained over the last 9 years, I do however spend many hours staying up to date with my research and learning and want to be the best advocate I can be for all women and partners. Secondly I would never recommend something whether that is a product, a Dr, a clinic or anything that I don’t wholeheartedly ethically and morally believe in. I don’t gain anything from anything I do suggest and recommend and I am not affiliated in anyway that does anything other than benefit those that I support.
I believe the fertility and baby loss world is becoming more oversaturated and over commercialised than ever and would always say you don’t have to make a decision on anything right away, you can always change your mind about a decision you have made, always get a second opinion if something doesn’t sit right with you or your not sure.
So I’m going to start from the point you realise you have a problem, your more than 2 losses in and don’t know where to turn next, I’ll go from the basic stuff into the real nitty gritty of what could be going on, I don’t like to scare the living daylights out of people but actually feel like having this all down in one place may be useful for lots of you.
The first big thing to consider if you have had 2 or more losses is, were they related? Did they happen in a similar way? Of course there are people that have had really shit bad luck and had an early miscarriage followed by an ectopic pregnancy or partial molar pregnancy, basically two very different losses that most likely are not related in any way and would not generally indicate there is something wrong. Other than you have been dealt a really shit pack of cards. If that is the case for you, although it’s not easy emotionally or physically I would say personally I would try again, if there’s no pattern or factors that make you believe something is wrong.
If you have had 2 miscarriages and are over the age of 35 and basically classed as a geriatric want to be mother by the NHS then you can ask to be referred to your local NHS recurrent miscarriage clinic, check your local ccg and the nice guidelines but if your over 35 they should refer you so please don’t let them fob you off with the whole you need to have had 3 losses. If your a spring chicken as they would say and you have more time on your side then unfortunately yes you will have to lose 3 babies and go through the turmoil 3 times before you can be referred- AT THE MOMENT. All of this should be changing so that every woman is entitled to the Tommys graded model of care, which is an amazing development and much needed research. The thing that pains me with all of these things is when things are implemented as ‘recommendations’ then the NHS see it as something they don’t have to deliver.
I’ve seen it myself with my own eyes now having worked in the NHS. They will tick boxes on a risk register or rag rating to turn it green or amber and then just as it’s looking good pull the funding from underneath it to be able to tick different boxes in another area. A constant state of flux to try and look as good as they can without actually upholding gold standard care that every woman and partner deserves. I’m very aware this isn’t just the case for women’s health and is a National crisis within healthcare.
It’s really important that any pregnancy that you do have no matter how ‘early’ that it is logged on your NHS records, at the time when your going through it, especially early loss people sometimes feel like they don’t want to go sit in a&e or push to be seen by their GP. I can’t tell you how often I speak to people who regret that a year down the line when they are trying to fight for a recurrent miscarriage referral. So if you can, go get the bloods done and get it on your record, I know we don’t go through loss thinking it’s ever going to happen again, that’s the awful part.
If your most recent loss has been managed in your local epau then they will most likely refer you directly, please when you feel ready follow this up and confirm the referral has taken place and is on your records as actioned. If this isn’t the case then you will need to set up battle with your GP for a referral. These waiting lists can vary all over the country and locally I know can be the best part of a year, there is nothing worse than thinking your on a waiting list to be seen and then finding out you never was.
It is really important that you look into who it is you are being referred to and whether your local hospital actually has a specialist recurrent miscarriage consultant or team, If they don’t then you most likely will just be referred to a gynaecologist… this is going to be a waste of yours and their time in most cases, the knowledge just isn’t the same. Many hospitals now speed up the process by getting your GP to run the recurrent loss blood panel and then the long wait is for a consultant to see you and interpret them.
It may be helpful to know that you can choose to be referred to any hospital, you do not have to be referred to your local hospital therefore you can ask to have your rpl referral made to a specialist that you have researched at another hospital and to be added to their waiting list, I know many women that have chosen to be referred to a London doctor that specialises in rpl rather than waste time waiting to see a local gynae. Your gp may seem extra confused at you suggesting something soooo crazy but you just have to stand your ground, tell them what you want from them and what they need to do.
Ok so your now on a waiting list and classed as a recurrent miscarriage patient, maybe you are wondering what they are going to test you for… the most common rpl panel that the NHS will run is a basic blood clotting panel, thyroid panel and if your lucky a more comprehensive blood clotting panel called thrombophillia. You may also get a 3d scan of your womb to look for any obvious structural issues that could be causing your losses. In the last 7 years i couldn’t even tell you how many women I have helped but I could tell you that it is very very very rare that this NHS rpl panel will give you an answer for your losses. Yes some women are found to have a clotting issue and if that’s your problem then great… however it’s not common to find that’s the issue.
I think a lot of women pin a whole lot of hope on this NHS blood panel and are then very disappointed when 9 times out of 10 it comes back all normal and you are told to just keep trying it’s just bad luck. For me personally I would not stop trying for a baby whilst on this very long waiting list, you are wasting time especially if time is not on your side and you are pretty unlikely to get an answer after all of the waiting too. In most cases if you do become pregnant in the meantime and inform the hospital they will try to expedite any results if you have already had them done.
What can you do in the mean time? Well as most NHS doctors used to think aspirin is the answer and years ago it was the first thing they would try for recurrent miscarriage for all women. They usually advise 150mg baby aspirin daily at night, you can buy this over the counter at boots or many other stores.. I took it pretty much for two years straight every day… the concept is if you have a mild clotting issue that aspirin would suffice and solve your issue, it’s pretty harmless so they just suggest it to everyone. However if you have a known blood clotting issue, haemophilia or stomach ulcer it is not advised you take aspirin empirically.
You will find like with anything fertility related that there is a lot of mixed opinions from doctors and nurses on aspirin and that the advice is very mixed and subjective. I am of the opinion that if it won’t hurt then it’s worth a try, I’m an advocate for the kitchen sink approach as long as it’s safe for you and your own risk factors are considered.
Make sure that you are on a good prenatal supplement, I only recommend the Zita West range of supplements, Zita is our charity patron, with 60 years of experience as a consultant midwife and advocate in the indicated. I would say the products are pretty average price wise… not aldi level.. not M&S more of a mid ground sainsburys price bracket. They have everything you need and more to supplement your body in preparation for conception and they are folate based. If you want to purchase please always contact me for my link as zita donates back to the charity from any purchases but also gives our service users a discounted rate. I could talk forever about supplements and egg health etc and I am a huge believer that we can improve egg and sperm health through supplement use. I talk about this a lot in my free zoom session I do called ‘The Birds & The Bees’ I do this once a month so just get in touch if you want to learn more about my thoughts and what I recommend supplement wise.
If you have experienced a miscarriage (even one) that has started with bleeding then supplementing progesterone in any subsequent pregnancy may be beneficial to you. I am very aware that progesterone is not everyone’s answer, I’ve heard this said to SO many women that have advocated to ask for it over the years. Yes it’s not the answer for everyone however it is a crucial hormone in any pregnancy being successful and if you do have an issue with your natural progesterone it is potentially an easy fix.
Things have definitely moved in the right direction with regard to getting progesterone compared to back in 2017 when I literally could not get it with love nor money in the UK and resulted to getting it abroad. However due to lack of knowledge mainly in primary care and GPs it can still be a real battle. I would recommend printing and taking the Tommys guidance on progesterone to any appointment with you.
We must be clear that progesterone or any other medication protocol that you are putting in place will never save an unviable pregnancy that is not euploid and I hear it so often people saying they ‘tried that and it didn’t work’ people are quick to give up on something but without realising the medication can’t treat and fix an abnormal embryo whether that’s natural conception or IVF. So I always tend to say if you can cope with the mental health side of things then trying everything at least a couple of times is a good idea… if it’s not a pgta tested embryo that your trying a protocol on.
The next huge battle is accessing progesterone so that you can take it from a positive pregnancy test, as a lot of NHS consultants initially will only prescribe it from after a viability scan at 6/7 weeks that has confirmed the pregnancy is in the uterus. For many people especially if you have a luteal phase defect (spotting in the luteal phase) that is way too late and they won’t make it to a viability scan before the bleeding and miscarriage starts.
I have found that more specialist consultants that understand the role of progesterone and how crucial it is in the luteal phase and early pregnancy development are more inclined to treat from a positive test and most definitely they are in private care. My biggest piece of advice here is to go into appointments armed with knowledge and the more you sound like you know what you’re talking about the further you seem to get. So please straighten your crown and waltz in there like a boss lady and if all else fails throw yourself on the floor and cry at them.
Progesterone is also extremely important if you are struggling to conceive, you really need to have at least a ten day luteal phase after ovulation without any spotting. If you find you have regular spotting during the second half of your cycle this could indicate your natural progesterone is low, this is when you would need to fight to get progesterone to implement from 3 day past ovulation. Again I’ve only ever know very experienced NHS consultants agree to this but it’s commonly done within private care.
There are some blood tests that your gp is able to run, again this may be a huge shock to them that you are requesting something of your own accord, if they refuse it tends to be down to the GP surgery manager and their budget/policies. Try a different Gp in the surgery or approach the manager yourself with your very reasonable request. I absolutely love it when someone tells me they have a great GP that just says YES.
These are what they can do –
Anti- cardiolipin
Tsh
Fsh
Lupus
B12
Full blood count
Vitamin D
Prolactin
You may as well have these done whilst waiting for your consultant app as they will give you some sort of indication as to whether basic blood clotting or thyroid problems is your issue. I cannot tell you the amount of women that have no idea that thyroid function is a cause for miscarriage and the amount of gps that also don’t tell women this too, it’s more likely an issue than blood clotting is.
Something to consider when having your thyroid function (tsh) checked is that the nhs reference ranges are for Joe bloggs and not for women who are pregnant or trying to conceive. Your tsh should be 2.5 or UNDER before starting to try for a baby. The nhs would say that a tsh of 3.8 is normal IT IS NOT. Thyroid function can also rise very very quickly in early pregnancy so if yours is already too high pre conception and then shoots up, it could likely be causing miscarriages. One good thing that has been included in the newest rcog updated guidelines for fertility is more consideration into research where thyroid function is concerned.
Other quick things you can easily check and think about are, celiac disease are you celiac or have an intolerance to gluten? This can cause an inflammatory response in your body lots of women go for a gluten free diet if they think that they do have an intolerance or are celiac.
Are you b12 deficient? If so then this could also mean that your body doesn’t absorb folate (I have this it’s called mthfr gene mutation) they will never ever look into that on the nhs for you. It’s best that you are taking natural folate as this is much easier for your body to break down and absorb than synthetic folic acid. However that said there is a place for folic acid to prevent neural tube defects in pregnancy and there is little evidence yet to say if folate has the same affect so I would say take both of you wish.
Most supermarket pregnancy supplements won’t have folate in they will be folic so you need to invest in better supplements. Definitely get your vitamin D checked, low vitamin d can be a cause for loss and you may need an injectable to supplement it if super low, if only slightly deficient or borderline you could correct this your self with 5000iu oral supplement vitd3 daily. Do you know your blood type? Check that you aren’t resus negative as this can also cause loss and you may need treatment from conception to help maintain a pregnancy.
Another test that only some couples are now offered on the nhs is parental karyotyping, this is no longer funded as part of standard rpl testing and hasn’t been since 2017. You will normally only be offered this test if you have had repeated losses that have been found to have the same chromosomal issue recurrently, to check if you or your partner are a carrier of the findings. If you have been through a tfmr (termination for medical reasons) or had a loss that has lead to karyotyping of the baby and found something that is generally inherent.
It’s really quite rare to find something with parental karyotyping however if it’s something you want to rule out you can have it done privately but it is very costly in the uk. If you do get a result from parental karyotyping then you would be referred to what is called a genetic counsellor, people often think that this involves ‘counselling’ like therapy, after all the word is in their job title, however that is not the case and it is more of a medical appointment to explain the findings and how this will impact your future fertility. Usually you will need to have PGT-A tested IVF if this is your diagnosis.
If you have had 3 or more recurrent losses and have had to have or opted for medical or surgical management, at this point they will send the baby away for genetic testing to check for a chromosome abnormality as the reason the pregnancy didn’t progress. You will notice here I feel very strongly about saying they remove and test THE BABY… I will never forget the time a nurse said to me that they would send my product of conception off for testing… what the hell kind of language even is that! Or even worse.. the tissue.. I’ve had a baby referred to as tissue before too.
It is also possible to send a baby for testing that is passed at home, your hospital should have a kit to give you to take home should everything happen at home and people used to think that you were less likely to get a result from the testing if you had touched/handled the baby but have looked into this and spoken to a genetic department for them to confirm that is not the case. Unfortunately it does still need to be a 3rd or higher loss and they will not send for testing after 1 or 2. Wouldn’t it be great if this could be funded one day, it would give parents so much more chance of clarity of why this happened to them.
It is important to mention that there is never a guarantee of getting a result from any testing no matter the gestation of the pregnancy as often people do pin a lot of hope on waiting for these results which can take a very long time and often are heartbroken and shocked if there is no result to share.
So with regard to the standard NHS testing that is as far as it goes really… blood clotting & thyroid panel, possibly a scan… if all fine… your normal there’s no reason for your losses and I remember once getting told ‘it’s like rolling a dice you just have to keep on rolling’ I do not think so! I do not believe that recurrent loss is down to bad luck at all… yes there are bad embryos and miscarriage is very common… but I personally think that recurrent loss always has some sort of underlying reason.
I do understand that they have to say these things because nhs professionals won’t recommend anything that is not offered by the NHS or clinically approved by the NHS, but it terrifies me that so many women just get told there’s nothing wrong and I know for a fact that many feel that they have to give up at this point.
Another battle that many women also face is getting an investigation and diagnosis for structural issues like endometriosis, adenomyosis, scarring or septate uterus. Getting a laparoscopy or hystereoscopy can mean long game on the NHS and waiting lists can be extremely long, but if you think you have symptoms of these sorts of issues, then it’s worth pursuing. However it can take a very specialist doctor to be able to correctly diagnose, please don’t let a sonographer either diagnose these conditions (because they can’t) or tell you that you don’t have them (because they can’t know that from a scan).
I would definitely be thinking about scarring of the uterus, if you have sadly had lots of losses and a lot of surgeries then it could be the case that you are left with scarring that may result in ashermans syndrome affecting your ability to carry a pregnancy and or to conceive too, you also may have an underlying septum that could be causing losses/infertility too. Again this is one of the things that most NHS doctors will say is not a cause for loss or infertility, however from knowing lots of women that it has been an issue for I would say it’s something that needs to be investigated further privately if you think it could be an issue for you. This has never been an issue for me but I have supported people in getting further investigation, albeit can be very hard and years of messing on the NHS. I do work with a private doctor that has a specialist interest in structural issues, endo & adeno that I can recommend but is costly.
Another thing that is not given enough attention within NHS investigation is that affects of male factor on recurrent miscarriage and infertility, the NHS tend to heavily focus on the woman being the cause and very limited testing is offered to men. The good thing here is that I would say the best thing to do really is to treat the male empirically regardless because we know that sperm can be improved with lifestyle and good supplements. Lots of people contact me and ask me what my thoughts are on paying for extra male testing such as dna fragmentation, I think what you need to consider here is, if the results are poor and the treatment is going to be lifestyle and supplements why not save the money and skip straight to the treatment. I guess though if your considering going down the private IVF route which I’ll talk about later then the test may help you make certain decisions about your IVF.
So to summarise, if your NHS testing is ‘normal’ then aspirin and progesterone with a good fertility supplement for both of you would be your way forward in my opinion if you do want to try again without any further investigation at that point. Bearing in mind it’s worth a few shots because progesterone and aspirin won’t save an abnormal pregnancy.
Before I go any further I will once again acknowledge that I am fully aware that private health care is not an option for everyone and that I don’t just think it’s an easy option. I know for lots of people it is not affordable and must highlight that the reason I do all of this work that I do, is to always try find other ways or options for women and to pass on all of the knowledge I have in the hope that it could be something small that has been overlooked and means someone that has given up could actually find their answer.
If private investigation and treatment isn’t an option for you then reading any further may not be helpful or useful although I do think you can never equip yourself with enough knowledge when you are faced with recurrent loss. Even if it is out of reach right now you never know what the future holds and so reading on and knowing about other causes and broadening what you know may help in some way in the future.
When starting decide what to do next it can be very overwhelming not knowing where to turn and which doctor or clinic to use. One thing a lot of women tend to do is jump straight into ringing their local spire and booking in with a consultant there, just go careful with this as often it will just be a gynaecologist with an interest in miscarriage and often not a recurrent miscarriage specialist, so make sure you do your research about who it is you want to see at your local spire.
One useful thing you can achieve with doing this though is you can often jump the NHS list by paying for a consult at the spire and that consultant fast tracking you to your NHS blood panel, I’ve found that’s about as useful as going to the spire gets… again only my own experience and thoughts. If you want a doctor that is going to take a full fresh look at your history you need someone that lives and breathes this in a specialist way for a living.
If you have ruled out clotting issues, thyroid function and progesterone then this is where it can get a bit more complex and take you a bit more rogue. Depending on your symptoms and personal history you probably will look at things in an order that makes sense to you.
- Microbiome
- Immunology response
- Immunology compatibility
- IVF with embryo testing
Microbiome testing has been going on for years in Europe, I did it myself 9 years ago and since then there has been more research and so many more European clinics that test and treat the uterus and vaginal environment for hidden infection. In my opinion it’s the next thing to check and rule out or treat that is relatively cost effective without taking a massive leap into private care and spending tens of thousands right away. Once again it’s something that most NHS doctors won’t have any interest in listening to you about and definitely won’t treat or action, however in the most up to date nice guidelines for fertility published this year ‘treatments based on endometrial receptivity testing’ is a recommendation for NHS research, which is an advancement at least.
Your microbiome can carry a host of many different hidden & underlying infections that are often never presenting any symptoms and many people carry them and have no idea. I have supported many people that have tested and treated the microbiome when infection has been found and they have then gone on to have a successful pregnancy. This is also very relevant for anyone that has repeated unsuccessful implantation through IVF. I’ve known many people do lots of transfers with no success and after treating the microbiome gone on to have a successful transfer. I also will add that when I had mine tested it came back clear and no signs of infection and I have known this be the case for other people so it’s not a case of everyone gets a result showing an infection that requires treatment.
You will find that the Greek clinics are the most advanced in their testing offering and also most cost effective. Most of these Greek clinics do offer an at home test service so it doesn’t involve you needing to travel there. We do have tests here in the uk that you may know as Emma & Alice testing which are a similar type of test but far more costly. I tend to recommend people use a company called Fertilysis as their test has two parts to it, a vaginal swab and also you collect a sample of your menses to send off for testing. This test then looks for infection in the vaginal canal and from inside of the uterus lining, lots of cheaper tests you can find online are only a vaginal swab. The most infections that they look for are ureaplasma, chlamydia, gardenella amongst others.
If you are found to have an infection the report will show what infection, the level of infection and the type of antibiotic treatment that is needed to treat that specific infection. It usually also gives you an indication as to whether your partner could also be carrying the infection and if they also need treatment. You can also get a male microbiome test should you want to check you both. Once you have taken the treatment you then have the option to either retest to see if the treatment has worked and the uterus is clear of infection or some people choose to not do the retest and to continue trying to conceive or with IVF. I think depending on the levels and amount of infection really determines whether you think you need to do the retest.
If your going to use fertilysis they often do put deals and offers on their website, we do get a rate for the charity that is included in the highlights section of our instagram. I would always say check for better offers on their site though before using our link. Sometimes it can be hard to get an NHS doctor to prescribe the treatment off the back of this testing, but I have known people with a good GP that will happily do it, so it’s a bit of a gamble. You can pay for a follow up consultation with the test companies doctor and they will usually prescribe what you need. I do also know of other Greek clinics that provide this sort of testing both alongside further recurrent miscarriage and infertility testing or IVF treatment and happy to chat to anyone about this in more detail.
The next thing that I’m going to discuss is immunology and pregnancy/infertility, now this is not spoken about very widely within the NHS because it’s not something they will treat, there hasn’t been any big enough clinical trials and research to warrant this ever been considered as a cause for treatment on the NHS and I don’t think there ever will be, and so you will find the majority of NHS consultants refer to it as ‘experimental’. However I would say in recent years there are definitely some good private consultants with good immunology knowledge and it’s become less taboo.
Now I can tell you that immune issues especially immune response testing that looks at how your body is behaving overall and how it may become overly activated and affect implantation or pregnancy is a LOT of womens issue and more importantly it is the answer for many many women that I have spoken to over the years and that I have read about. It’s controversial because the research is so new but if anyone tries to tell you (especially a medical professional) that it is nonsense, please don’t listen to them, if it was nonsense then why do so many women have success with immunology treatment? The answer is.. because it is real, it is an issue!
For me I had 3 pregnancies that I had no immune protocol and all ended, I had a 4th pregnancy which was my first pregnancy on immune treatment, that pregnancy did get further that I ever had before but still ended, testing of the pregnancy did show an abnormal little girl and so the immune protocol would never have saved that pregnancy. My 5th pregnancy and 2nd chance at immune meds did result in my living Son.
When we decided to try for a sibling in lockdown we tried again in the 6th pregnancy without immune treatment for various reasons those being cost, lockdown limitations and various people in my life getting in my head saying “maybe he would have worked regardless” “you probably just hit a good one and wasted all that money”. Well the 6th pregnancy also ended in miscarriage, we then turned back to immune treatment for the 7th pregnancy which worked and resulted in my living daughter. For me I wholeheartedly believe without an immune protocol I wouldn’t have them.
I was found to have a high number of nk cell count, the specific cell was cd69 and these cells attack the fetus after implantation. There are also other kinds of nk cell issues such as activation level nk cells which isn’t necessarily the amount you have but it’s how aggressive they become in pregnancy that causes an issue. These issues are classified as an immune response problem and have become more well known in recent years. Again you will find mostly that European doctors and more informed about this side of things.
Back in 2017 there was very minimal options of places you could go in the UK for testing and treatment. As I have repeatedly said in many of my blogs about ‘the king’ yes he is Mr Shehata, I think he is a fantastic doctor, I do not believe that I would have had success if I hadn’t gone to him for my testing and found my issue. The clinic however is very high end price bracket and is not a cheap option, I know prices have risen over the last 5 year too. Choosing to go there is a real commitment as you have to be prepared to travel to London very regularly for lots of scans and there is no flexibility within that as far as I’m aware it is his way or the high way… we spent £7700 at the clinic in 2017/2018 and I know women that have spent upwards of 12k.
So if you were to ask me would I recommend the clinic.. if money & travel is no object to you and you only want to investigate immune issues, then yes I think you will get answers there. However that said I now do know that the treatment protocols there are not everyone’s answer and my experience was that they are not flexible on listening to your thoughts or the opinions of other doctors/specialists so if you want any flexibility within your treatment I would say this is not the way to go.
I also think there are other doctors and clinics now that are more open to looking at the full picture and not only immunology as an issue, sadly some complex cases have many other factors at play and you need a doctor that is open to working alongside other doctors and not a one shoe size fits all approach.
You have a choice really of investing in a specialist well known UK clinic and I would say sometimes this is what people feel they need to do, however you must go in with the funds behind you because it can run away with you very quickly especially if it doesn’t work the first time. I would say really do your research and potentially consult a couple of doctors before making a decision so that you can get an idea of their approach and how they would plan to treat you.
Alternatively you can look to go abroad which as always will be more cost effective but I know some people don’t want the stress factor of travelling and often can’t because of work and life commitments. Or there’s the option like with the microbiome testing of doing a bit of a mix and match, use an abroad clinic for the testing and then find a good uk doctor to work with to treat you.
There’s now lots of new research, testing and treatment that is used since I went through it 9 years ago and immune compatibility is now something that is heavily researched and tested in Europe. What I will say about this, as like with anything new and emerging it’s definitely even harder to get any doctor in the UK to buy into it (not literally). Immune compatibility testing focuses on how the immune systems and genetics of two partners interact with one another. The most common examples you may read about or hear of are HLA matching & KIR testing. The theory is that certain combinations between the embryos genetics and the maternal immune receptors may affect implantation, placental development or cause recurrent miscarriage. It’s very complex and generally not something people would need to turn to unless they have a very complex journey and have ruled out everything else in my opinion.
In fact as far as I’m aware there is only one Dr in the uk that is using the treatment that is used abroad for immune compatibility treatment which is called LIT and he’s called Dr Gorgy and has his own clinic in London.
If you are going to be open to going down this route of investigating these types of things I just have to say that you need to be aware that you can open a whole can of worms and find yourself spiralling into lots of testing and treatment that is in most cases extremely costly to the majority of people.
If you choose to go to Dr Gorgy the testing is very comprehensive and the treatment is offered here but incredibly expensive compared to abroad, I have supported several people that have used this clinic and had success but at the detriment to financial implications.
Again you could choose to use a company like Fertilysis but if you end up getting results that say you require LIT treatment then you need to be prepared that you will need to travel to Athens and more than once too… the treatment is heaps cheaper but you need to be able to make the travel and everything that comes with that work.
I am very conscious more than ever right now that some companies are becoming extremely over commercialised and using popular faces of celebrities or influencers to market and sell their brand and this does seriously put me off from an ethical and moral perspective. However the actual tests and practicalities are just great value for money and as I’ve said before I so wish alternative options and access to testing was available all those years ago.
I also have seen multiple times people receive their results after a full immune panel testing and be advised they must have LIT treatment and for that to be financially out of reach for them. They have tried alternative immune protocols that are more easily available in the UK (not that easy though sadly) and gone on to have success and have not gone down the LIT route.
I am currently working with and have connections with 3 doctors that I think are great, super knowledgeable and believe in personalised care for each individual, they align with my values and views on the over commercialisation of fertility and I personally believe are great empathetic doctors. However I’m not going to make recommendations here because I want to continue to get to know them and experience them supporting our service users before I begin to shout about them as that would be irresponsible of me. If you wish to discuss more with me and to know about who I recommend then the best way is for you to self refer on my charity website with as much history as possible and then to be triaged for a support call.
As I mentioned earlier it’s imperative to remember with all of the above that with natural conception we are bound to hit bad embryos, we all create them, 1 in 4 pregnancies end in miscarriage. With IVF we still create non viable embryos and so If your applying any protocol either naturally or with a none tested embryo you are always against those same odds of being 1 in 4.
I find myself repeatedly saying to people that IVF Is NOT a treatment for recurrent miscarriage and if you don’t find the root cause of your recurrent losses, IVF isn’t going to be the answer. I have lost count of how many couples I’ve helped that have been referred for IVF and told they are infertile when they weren’t at all and just needed some support.
However turning to PGT-A tested IVF is often what many couples or individuals choose to do because when you have invested so much financially, mentally and emotionally on testing and a treatment protocol, well you just want to know your using it with euploid embryos and want to remove the Russian roulette factor of abnormality by chance over and over again. If you are applying a protocol with tested embryos and still having no success then there must be an other factor at play that has been missed or left untreated.
I speak to so many people in absolute despair doing IVF and having either unsuccessful implantation or miscarriages that have no idea of the actual stats of untested IVF embryos and that on average only one third of embryos from a round would statistically be viable and result in a live birth.
It’s a huge thing to consider especially if getting pregnant has never been your issue and then you find yourself considering IVF, it’s a big toll financially, physically and emotionally. In the Uk it is far more costly to do embryo testing and way more cost effective abroad. We work with a clinic in Czech Republic & in Spain that we have seen great success rates with and people having the opportunity to get a lot more for their money then they can here in the UK. It’s usually the last resort after exhausting all of the above but I urge people not to go into this without thoroughly considering and investigating all of the above first.
Well there it is a fresh brain dump 4 years on since the last one, what has definitely changed is there is way more option and choice in terms of doctors, clinics, tests and treatments even since 2022 when I did the first version of this never mind since 2017 when I was going through it.
I strive to help as many people as possible get their happy ending and will always stand by my beliefs ethically and morally, I take great pride and privilege that so many people regard my lived experience and plethora of ever developing knowledge so highly.
Keep on chasing rainbows & never give up on a bad day x
You can find me on all socials under Chasing Rainbows Charity and you can self refer on our website www.chasingrainbowscharity.com for support. Sometimes just having someone impartial to chat through next steps and create a plan that feels manageable to you is all that you need.
Xoxo Crazy Fertility Queen Xoxo
Crazy Fertility Queen 