I can’t tell you the amount of times I have heard people and professionals refer to women going through loss and infertility desperate, I had it myself on several occasions five years ago and it’s still said constantly now. I mean it’s absolutely true I was absolutely in despair and desperation at the thought I may not ever have a baby of my own, I was bursting at the seems kind of desperate to find and answer and to treat it.
If I or another woman want to refer to themselves as desperate in this situation then that just shows you are truly helpless and awful they are feeling so please don’t you call them desperate…. As yes we already know that and it’s not a helpful or supportive way to refer to a woman or partner that yearns for a child.
I remember five years ago sitting reading for hours on end, I used to lay in bed and trawl back through mums net threads dates back to 2003 in the hope of finding someone who’s hcg was slow rising and they had success… I’ve been there, I’ve been all levels of crazy and I bet there’s nothing you could tell me you have done that wouldn’t surprise me, I’ve done it all!
The reason we do it is because we want to self advocate we want to be the voice of our own story, especially when we feel like no one is listening. I used to walk into appointments hoping for a glimmer of hope to help us move forward and I felt like I had cello tape over my mouth and wasn’t allowed to speak because what I had to say didn’t matter.. it wouldn’t change the outcome of the appointment anyway.
I do think things are changing most definitely, looking back at 2017 when I was in the trenches of it all 6 years ago, no one was talking about recurrent loss, no one was doing the research into different things and virtually no one questioned what they were told by their doctors that they wanted to be able to have faith in and trust. What I’ve learnt is that everything is subjective and if you feel that you’re not being listened to or that something isn’t right, then go back, ask your questions and be that annoying person. At the end of the day you are just another patient, another number through the door and out as quickly, but don’t let anyone make you feel guilty for being desperate to find your answer and get your baby.
I’ve been wanting to find the time to write about our partnership with Fertilysis clinic based in Athens, I discovered them earlier this year after one of the women I’m supporting being told about them via a Canadian doctor and doing their testing. I truly couldn’t believe that there was such a thing, a clinic that does all of the in-depth panels of testing for reproductive immunology testing that women are paying thousands for in the uk. Part of the reason I started crazy fertility Queen was because I wanted to find ways of things being affordable for all which is difficult when private clinics are so pricey, some people have endless amounts of money to throw at testing and treatments but for others it’s just not an option.
Something that I find very frustrating is that with a lot of private clinics they won’t just do one test or won’t treat you off the back of testing you have already had done. It’s all or nothing and that’s what out prices the majority of couples. I understand the governance in that they need to know that a pregnancy is viable before they continue to prescribe you drugs, however why they can’t accept that a local sonographer to someone has confirmed a pregnancy is ongoing and viable, over making them travel an 8 hour round trip and pay for a consultant to scan which is usually over £300 making the total cost the best part of £500 with travel.
So having more flexible options for testing and treatment is so needed and so that’s why I will always continue to scope them out! Fertilysis offer a wide scope of testing which you can check out on their website but the ones of most interest to me were the immune panels & also the microbiome testing. If money is tight you could choose to do a panel at a time and to tick things off and you are not pushed into doing all or nothing. It’s all done at home so no you don’t need to travel to Greece… however a trip to a Greek island with a slab of feta and some tzatziki is always going to be quite attractive if you ask me!
The majority of people that I support have had all of the standard nhs panels checked and have been told they are fine and have no issue that is causing miscarriage, we also know that most miscarriages are caused by genetically abnormal embryos implanting and then failing to continue to develop into a normal fetus/pregnancy. However six years into this has also taught me that immune and thyroid issues are a huge factor for many women and treating those issues can lead to a successful pregnancy.
We also know that there is limited help, advice and knowledge in the nhs surrounding immune issues due to the lack of clinicl trials and research in the area, I also have come to realise that rpl consultants that are well into their career and have a set way of working are even more likely to not have a clue about immune factors and miscarriage or to completely dismiss it due to their own lack of knowledge.
For me if a medical professional dismisses something you want to discuss or ask about, that for me means they dont have the experience or knowledge to answer you and you need to pursue this another way…do not be silenced or told you are too desperate and looking for issues, go with your gut or your uterus and get the answers you are entitled too.
It’s all to often that women receive a follow up phone call after miscarriage testing to be told, it’s most likely bad eggs/sperm, it’s probably because your old or your too big etc etc. just keep trying and change your lifestyle, relax, be positive and it will happen for you. ABSOLUTELY NOT! Some women have been trying to build their family for years and your telling me if they just relaxed a little and lay off the chocolate bar on a Friday night whilst thinking only positive thoughts they will successfully get pregnant and carry a baby?!
Do you know what’s even worse, when someone is vulnerable and opens up to you and tells you of their struggles whether it’s to conceive or to carry a baby to full term and they are told “oh well you know my friend Sally she stopped taking her vitamins and went out let her hair down, had a one night stand and is now pregnant with triplets.”
The right thing to do is to always validate someone who is opening to up you about fertility and baby loss, just listen, acknowledge their struggle and validate them, don’t offer them unsolicited advice that’s going to imply they are desperate or crazy.
Back to Fertilysis! So if you have received one of those end of the line you are completely normal phone calls and letters and it doesn’t sit right with you and you wish to look into this further, Fertilysis is a good more affordable option if you don’t want to go full throttle with one of the high end clinics. I will say again here I owe my son to an amazing London clinic and great doctor but I am trying to look at options that are more realistic for people. Especially now with the cost of living added in we need options that are a bit more pick and mix.
Something else I LOVE about Fertilysis is how PINK it is! The branding has a lush feel to it that I think is not only pretty but empowering and super cute when it lands on your doorstep! The people that I have dealt with that work at and run Fertilysis are passionate about helping women and partners and they want to make things easier for women like us! For me it feels like they want to help the battle and be on the front lines with us!
Fertilysis have several immune panels so you can choose if you want to go for the full works or if money is tight you can select the tests you most want to have done. They have a function on their site where you can fill in a questionnaire and it tells you which tests they recommend for you, you can also always get in touch and we can chat if you’re unsure. They are supporting my charity by offering further discounted rates and you can find them in the link in our bio on Instagram.
We are working with a wonderful doctor here in the UK that will interpret fertilysis results and advise and treat you if needed, this is a partnership that has been created off the back of our partnership with Fertilysis and it just fills me with hope and positivity that by clinics, doctors, charities and anyone in this field really coming together we can make a difference and make things better for those that are going through the worst time of their lives.
Something else that I have become much more aware of since working with Fertilysis and doing a bit more research is underlying hidden infection and how it is the cause of both infertility and miscarriage for many. You may know this as the microbiome, I did touch on this briefly in a blog earlier this year but without much further context. I actually looked into this back in 2017 for myself and used a Greek clinic to test my period menses for infection at the time but it all came back clear. As I was found to have immune issues I never really looked into the impact that uterine and vaginal infections can have on fertility and miscarriages, however it is now a much more common test that people are looking into and often potentially before going down the immune route because it’s far easier to treat and correct than an immune problem.
As always there are tests at London clinics available which you may have heard of called the Emma & Alice tests that test for infection but at quite a price. The good thing about the fertilysis microbiome testing is that it tests both vaginal and uterine infections as you do a swab of the vagina and then send off a sample of your period menses to be analysed. Some of the infections that can be found such as endometritis, ureaplasma or gardenella (these are just some there are many) are infections that you could have had for a long time and could affect your ability to get pregnant or cause miscarriage. Here in the uk we are way behind most of Europe with lots of fertility related things and like immune issues hidden infection is something that is not routinely screened or investigated here.
If you are found to have an infection it needs to be treated with high dose and specific antibiotics to clear it, fertilysis then recommend doing a retest on your following cycle to check that the treatment has worked and you are infection free, making your vagina and uterus a friendly environment for conception and pregnancy. It’s important to note that sometimes both partners require treatment for certain infections otherwise you will repeatedly pass infection back and forth. If you want to test your partner too there is also a male microbiome test that you can order. Another test also available on their site is the male dna sperm fragmentation which is harder to get done here in the UK as it’s not tested on the NHS. Or if you want to check your egg reserve etc they have lots of options that you can add on to your order.
If you are spending lots of money on fertility treatment it’s important to rule out the little things that are more easily treated before you go ahead as infection could be the inhibiting factor stopping you having success.
Feeling desperate and alone, like no one was listening to me were the most overwhelming feelings for me when I was in the trenches 6 years ago, I know all of this won’t solve everything and I don’t have a magic wand but I’m hoping these little things will help you to tread water whilst you figure out what is next and which direction your journey needs to take.
As always you know how the saying goes, never give up on a bad day and keep on chasing rainbows.
Crazy Fertility Queen – Sam Catanach
Follow me on Insta – @chasingrainbowscharityuk
Crazy Fertility Queen 