Warning: This is a bit of a hard read and if you are in the motions right now of treatment I don't want to put any negativity in you..all of our stories are the same in a sense but also different.. this is just my personal story so far ....So, I have been trying to conceive for nearly over 10 yrs now, 6 years with Ivf.I have done 2 hysteroscopies, one laproscopy, 3 egg retrievals, 7 transfers , thousands of vitamins , diets, hormones, medications you name it...I have done a lot, and after constant failure (no hint of a positive not once in my life ) and after 4 different doctors ,,,today theoretically I went to the best that this country that I'm in has to offer, the doctor that is involved in all the scientific breakthroughs etc.
I was so optimistic walking in and I especially liked that he wanted to see all the tests that I have done thus far concerning my fertility ( my folder is so thick that I can't even tell you how many pages it is) because some doctors don't want to see past tests and it's like starting again.
I'm sorry this is long winded,, but to cut a long story short ... he hardly looked at our past test results, gave me a scan which he said looked really good follicle wise and uterus wise. Said that I have unexplained infertility ( no sh*t) and because I have never been pregnant to not waste any more money because he was not optimistic 😮.
Am I Insane ? I mean in a way I guess his right .. right? I've never been pregnant, so maybe I never will be ...its like all my intrusive thoughts that i have fought tooth and nail to keep at bay came up to the surface today to drag me back under and drown every little bit of hope and fight i had left in me. Am I wrong to listen to all of these amazing stories of how after years of struggle and let downs some of you gorgeous women have had, a miracle finally happened and you finally after so many years got to take your bundle of joy home........am I excluded from this type of effort and miracle?how can I be sure if I don't try though ?
Could all of this positve infertility talk of "miracles" and "it only takes one " and just keep going for that "lucky egg" actually be toxic for someone like me instead of being beneficial because I'm a lost cause?
I don't know how I held it together, but I sternly replied that I'm not ready to throw in the towel and I would proceed with or without his help. He gave us the good old bravo for our determination and threw in that surrogacy is something we should consider.....I wanted to faceplant the table at that point because if I knew that that is where the problem was maybe then I would entertain the thought. The problem is I'm looking for answers not opinions.
I then proceeded to the receptionist who was going over my history and at some point with a sympathetic look commented " wow you have done ivf soo many times"😖
I must be insane , like a dog chasing it's tail, all this miracle talk has made me insane.
Maybe it's not always OK in the end , maybe not everyone gets their miracle...... maybe everyone gets it except me and my husband.
I'm sorry for being such a Debbie downer ........ but it's been a long day 😔
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Islandgrl
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I've had a similar history to you - although perhaps not over such a long period of time, but it took us 5 years to get our "miracle". 4 egg collections, 1 tube clipping, 1 polyp removal, 6 transfers and the same in terms of vitamins, supplements, tests and injections.
I can completely understand the toxic positivity side of things - I very much felt like that when people would say "it'll happen for you soon" and I would just want to scream "but what if it doesn't????".
Personally I was like a dog with a bone with our treatment, I could not let it go and even when "unexplained infertility" was banded about I did a tonne of research as to what might help me.
My main "silver bullet" was PGT-A testing combined with steroids for high NK cells but I also know that although this worked once (for our little boy) - when going for further transfers it didn't work, so I think a sprinkling of luck is also involved.
But I would say don't give up because you definitely sound like you are not ready.
Happy to chat further if you want to see what tests etc we did.
Thankyou Millbanks ,I appreciate it ❤️PGT-A is the next and most likely final step for me , I have had a lot of resistance here from doctors when I have mentioned it in the past and at this stage it's the only thing I haven't done. I need to know I gave it everything before I even consider throwing in the towel. I guess that's what annoyed me today. Thankyou for replying to my little meltdown ❤️❤️❤️
Pgta testing is one of the first steps I’ve been told to take after miscarrying twins and 2 other embryos not sticking. We of course have a different set of circumstances though and our fertility is not unexplained. Sending lots of luck and love xx
hi, I can understand how you feel, it’s a hellish tough time. I don’t think it’s time to stop, particularly if you are not ready and as you say, there are not many answers.
For me, I was older at 43 years so a switch to DE brought me my daughter and that can always be an option. I don’t want to seem insensitive and I 100% understand how hard this is but I was told that most often the limiting step is embryo quality. But as you say, it’s extremely frustrating when it’s ‘unexplained’. My consultant described the process as a lottery which I thought was a really sh1tty thing to say at the time, but I realised actually she was right. I could have gone on for many more rounds and maybe one egg of my own would work as there are OE successes older than me but I was fed up of the process and inpatient so I knew what the best option for my age was.
I say don’t give up, but have a look at slightly different approaches maybe? It can definitely work when you least expect it , I feel for you, I’ve been there and it’s rough. Good luck xx
Thankyou Kitkat ❤️I am definitely open to DE at this point. When I told the doctor I'm not stopping and am open to this route he told me that judging by my previous embrios he doesn't think that is the problem, but then again without PGT-A I guess it's impossible to tell.
Hi, I’m sorry it’s been challenging, I was lucky that it worked first time. I had 2 embryos from 7 eggs and used donor sperm so I know the sperm was ok. My donor is 23 so I thought that 2 embryos from 7 eggs was quite low? But it didn’t matter as thank goodness the first one worked. I agree it does come down to luck and now the chances are definitely in your favour. Good luck 💚💚
Sorry...thank you for sharing your story. My 5th transfer worked but it was the first ever frozen cycle because I never had anything to freeze due to my age and/or egg quality. Our fertility is unexplained too but the only reason I went for IVF is to give us a better chance because of my age and previous birth trauma (pregnant naturally which ended in late loss; stillbirth at 39+5). The way I used to explain it my husband was, one egg collection (12 eggs for example, which was my best ever) was equivalent to one year's worth of trying naturally. Although there are 12 months, we still get around 25% chance of conceiving. So yes, IVF kind of sped things up a bit. I dread to think how long it have taken had I waited which was not an option as I started process at 41.
Can I ask your age as I couldn't see it anywhere. I had my second son born alive 4 weeks before my 44th birthday a few months ago.
Please don't give up just yet. Maybe have a few winter months off from IVF and try naturally. Keep warm and make sure you go for walks to help with blood flow. I was pregnant twice in winter (late October and early December), both times I actually went on a high protein diet with a lot of eggs and avocado.
My DM is always open.
Just because you have never been pregnant before doesn't mean you will not be pregnant. Doctors only given opinions, some Drs give their opinion based on research and stats.
Drs are not God and they cannot predict miracles or pregnancy outcomes etc. They cannot fully predict how your uterus is doing unless they had a camera down there.
Also, what is your amh?
Those words are special and yes, it only does "take one" x
I'm sorry if my reply bought you any triggers. Wishing you success in the future x
Thankyou London lady ❤️I'm now 41 yrs old and the panic for me has set in. I have always had a really good amh for my age, I had to do a new one yesterday due to my last one being at the beginning of the year, I'm not sure where it's at now I appreciate you and everything you wrote.hopefully my "one" pops up soon because it's like the doctors are giving up with me ! But your right, they are not God. I can only keep going for now .
I could not agree more. And it is worth noting that it is quite crazy to see that when one documents herself and make her own serious research, one realizes that most of these doctors are not crazily knowledgeable about the subject. Only a few really understand what they are talking about, often the most humble and able to recognize that at the end of the day, we don’t know that much about infertility.
In my opinion, the US are definitely well ahead of Europe, their success rates speak for themselves. For me personally, 3 transfers 2 pregnancies. I am so sad to hear stories of ladies who lose YEARS, just because we don’t automatically PGD in Europe. It is a shame, knowing for a fact that most of human embryos are NOT viable.
Yes you are right, they actually are not that knowledgeable. In the UK, they still do fresh transfers. I had 4 failed fresh transfers before going for one and only my frozen embryo transfer which was my last transfer. I hear that in the USA, almost all clinics do frozen transfers.
I guess if all embryos were viable then women would be pregnant first try.
In the US, they do frozen transfers by default. Studies show that these have better results, in addition to reducing the risk of hyperstimulation.
I have done my IVF and my first transfer in the US and my three others transfers in Europe, and the disparity in knowledge and general level is shocking. Most EU doctors are jokers, in my eyes anyway, and I have seen quite a few.
Hi Sarah, thank you for sharing your story. I have had 2 frozen embryos transferred and they both failed. It was PGT-A straight away as at the time I was 38 with a low AMH level. It’s heartbreaking as my consultant thought it would definitely work. IVF is very tricky and blessed are those who have had success with it especially in the first, second or third transfers. I am still hopeful though but I must say with PGT-A it’s very expensive😥
Did you ever have a backup plan? An out? Like “if it doesn’t work I’ll live on a farm with 10 dogs and cat” (not necessarily that but everyone is different). For your sanity it is worth forming this back up plan in your mind, it helps. I’m not saying you should give up and neither is this doctor it’s just that this journey is soul destroying and to feel stuck in it forever is very disempowering for you. Xx
Hi SnottyCow ❤️ I do I guess,,,but I think I would be more OK with it if it was just about me you know? Apart from that longing in me ,I also think about my husbands 😔 if someone turned around and said you know what..this is why and it's impossible due to this or that then I would have to accept it ....but when they are saying everything looks great and we don't understand why.... its like leaving you in this crazy limbo.....I honestly feel insane ....I need answers to move in any direction at this point. Thankyou for your honest and Valid reply ❤️
If like me your end goal is to carry a baby I would say move to DE. For me it just felt like I was skipping past all the extra issues around egg retrieval and egg quality et cetera. I am a bit older than you but unfortunately the quality drop-off when you get past your 30s is a bit scary! It’s still took me seven transfers with 10 embryos with DE having said that. I also had the phrase unexplained in fertility mentioned.
Hi Doodlebug ❤️ I am so open to that also and we had a transfer around the same time at the beginning of the year ,,I remember reading your story and congratulations on your pregnancy ❤️❤️ your story gave me hope at the time and made me more at ease about choosing the DE route if I had to.❤️
Ah did we! Thankyou. I know it’s a big decision but I don’t think I feel any different than if it was OE. Carrying a baby was the thing I really needed to do. Hope you feel better soon - it’s good to have a rant!
I can completely empathise with your story I have been trying for a baby for 20 years. Initially I was told after a lap and dye I had blocked tubes with adhesions - so lots of years of failed IVF and heart ache! I had an operation to remove a fibroid that ‘could’ be affecting implantation - the surgeon found no adhesions on my tubes …. So they were checked again with the dye, 15 years after my original diagnosis and found to be absolutely fine and not blocked at all - so they then decided I had unexplained infertility - which I think is a cop out because there is always an explanation they just haven’t found it. I even donated my own eggs it age 22 because I was so sad for the women I met who couldn’t even get to making an embryo.
At 38 I was told my best bet was to try doner eggs myself as the years have gone by my fertility has declined as it does for many women - still never an explanation of why I couldn’t get pregnant. DE failed twice and I felt exactly like you. Any of the women I read about I was happy for but thought nope it’s not for me my miracle won’t happen. My last FET with donor egg has worked ! It’s very very early days but even seeing 2 lines for me is an achievable is nothing short of amazing. I don’t believe I would have got that far without steroids as this is my first positive and first cycle with steroids. A move insisted on and my consultant didn’t agree with.
Keep going, it is one hell of a journey full of sadness, anger and frustration but if I can happen for me I really believe it can for anyone. Donor eggs may be a way forward if you would consider that?
Sending you a massive hug and good luck along your journey
Thankyou Forevertrying ❤️And congratulations!!!I really have everything crossed for you because I know exactly how that is and to cross that line of seeing a positive test is so monumental ❤️❤️❤️ have these doctors never heard of this before? I have read soo many stories like ours and to have this guy say in his 30 yrs of being a fertility specialist, cases like mine (total unexplained infertility) are so rare that his not optimistic left me abit gobsmacked...I'm sure atleast 30% of women that walk through his door have unexplained infertility...are they all lost causes ? Was he unable to help them? Did none of them ever fall pregnant?I get my case is hard.....but with what I know , not impossible.....yet anyway ❤️❤️❤️ thankyou so much for sharing ❤️❤️❤️❤️
Oh I know, it feels like you’re being written off, unlucky, a really individual case that is so unusual it can’t be understood. It’s not true, there are so many of us that have this struggle. It is possible, I can’t say what your missing piece is to getting your positive but I believe it’s out there. Sending love and light. Message if you need any support xx
when I first read how many years you had been trying I thought gosh that’s a long time but then read on to see you had only 3 egg collections and 7 transfers and realised in terms of IVF side of things that wasn’t that much. So I guess what I’m saying is my first reaction was hope for you! It took 5 egg collections and 11 transfers (some double) for our current pregnancy is maybe why I think like that but all I can think of is there is still hope of unexplained and you are getting embryos to transfer! I would defo be looking for an explanation for the unexplained part though and it doesn’t sound like it is with this doctor no matter how ‘fancy’ his credentials might be it’s sounds like he is more interested in his clinics stats to me 😢 I’m so sorry they treated you this way! Xx
Thankyou Twiglet❤️When I have posted you have been a little light for me and I really appreciate you ❤️
On the ivf side of things I felt the same in the sense I have had only 3 egg collections which resulted in 7 transfers....I know and have read about women that have had more and finally were successful,,but he made me feel like that wasn't normal .....I don't know maybe it isn't.......maybe because I would wait 6 months after each transfer before I would do the next ,,,maybe I wasted too much time, I just not waiting for that kind of response from a renowned ivf clinic...like it's unheard of!!
Sending you so much love and a big congratulations and cuddle❤️ thankyou for being there.
Thank you lovely, what a nice thing to say when you are feeling so down yourself! I think some people/doctors take their bad days out on others and don’t realise the impact their words can have on someone’s whole life! I wouldn’t have expected that either and would feel the exact same as you. One of my consultations a couple of egg collections ago went similar to yours did with the consultant basically saying my eggs wouldn’t work and none suggestions I ignored them for a few more rounds (luckily) In case that helps xx
You recently replied on one of my posts and now I am reading your story I just wanted to say how lovely it is to see that after all that time and heartache you are pregnant again😊 What do you think has led your your final success?
Thank you so much 🤗 I honestly don’t know, I stopped all the diet and lifestyle stuff except coq10 and just lived my life as much as I could. Even went to the canaries in the 2WW! I think probably it was a bit of a case of keep on trying for the right embryo with me tbh as I had quite a few losses along the way but I had blood thinners and lubion to cover those bases too. I also don’t know if the frozen transfer helped a bit this time and maybe my body doesn’t cope as well with fresh transfer right after egg collection. I honestly don’t know I just kept on keeping on and so far luck is in our side with this one xx
girl I read your story, you are 41 young !!! I am sorry but European doctors are FAR from being the best and I am astonished to read that with everything you have done, you have not done PGS!!!! This is the fucking beginning!!!!!! Of course you don’t stop!!! If I were you I would go to the US, they have the best results in the world, notably because PGS is a starting point! If you would like to discuss, I will happily give you the name of my doctor there. I am French, 41 just like you, I have 3 kids 2 of them with IVF and I now live in Europe. I did my IVF in the States and all my embryos were made there. I made a number of them to travel to Europe as I live there now. PGS is absolutely critical, it is the starting point!!!! I am here if you would like to speak about it.
Awww Sarah ❤️ I love your reply and energy ❤️❤️ soo needed right now !!! I have heard this about the U.S but my only concern is their pricing!is it still super high? Thankyou so much for this reply ❤️
Yes it is super high, but keep in mind that they treat it as business, everything is negotiable! In Europe we end up spending fortunes little by little, in the US everything is clear and straight, and definitive. Look at the approach: in the US it is one payment so clinics do deliver results, no choice. Even the prescriptions are not the same: in Europe the doses of Gonal are RIDICULOUS and we end up with a ridiculous number of embryos, in the US they go strong because they know that they are expected to deliver results. You should pick up your phone and call and ask, at least you’ll know. Book a consult talk to them and ask if they would be ready to help you and at what cost. At least you’ll now, it will be concrete information. I am happy to give you the contact details of two cracks I know, one of them by experience as he is the one who managed my entire case. They are in Texas: Dr Moghadam at Austin Fertility Clinic and Drs Kavoussi (they are brothers - I do not remember the name of their clinic). They are competitors but are all absolutely brilliant and super duper clients service oriented. They explain you everything, they tell you what they do and do what they say they will.
I can totally sympathise with you. I think it's harder to hear its down to luck or a bit like winning the lottery. Those words are hard as it must be something. Like one of the other comments said they just haven't found it yet. I'm 43 and currently on my last run of a long journey, as I'm just drained mentally and physically.
I've done diets, lifestyle changes, gluten free, no alcohol you name it I've tried it so on my last few attempts now I'm taking more of a relaxed approach still living life eating and drinking as I would.....most people who conceive don't make changes so I'm trying that approach. Thinking back to all my times in my 20s when I was neurotic about not accidentally getting pregnant makes me wonder would it have been so bad if it wasn't the right person/time.
Don't know if my comment helps but this page makes me feel less alone and I hope it does the same for you
Hi Jam❤️❤️❤️Your comment and all comments help so much ❤️ this is the only place where I can talk and I know everyone understands....ivf is a lonely journey,,,,all of my super close people haven't needed Ivf to fall pregnant,, and when you try to explain I can see they don't grasp it!!! I have stopped trying to explain.......this page has been so crucial to keeping ( even if by a thread) my sanity somewhat intact..I appreciate you and all the women in here ❤️
And I am sorry that your miracle has never happened. But you should stop for the sake of your body's well-being. IVF has side effects. You have been lucky enough not to suffer something that would change your life forever.
In the recent case of a female who suffered a stroke after IVF, when the doctor promised 15% of potential pregnancy, in reality, she had around a 2% chance. But she kept pushing and trying. Sometimes it is time to stop.
This is rare, but it does happen.
( yes, this female in question has sued the clinic).
So, it is imperative to listen to doctors and sometimes get a second opinion.
That’s a pretty substantial claim to make with only anecdotal evidence. Would you like to verify what you have said with clinical studies and evidence.
why so passive-aggressive? This forum is not so supportive after all because we all like to attack people with different opinions. Right?
Would you like to do some research, read various articles, and search for case law on these situations as they happen? Whether you believe it or not, I don't care - to be honest. Read yourself. Then perhaps we can have some constructive discussion without passive-aggressive comments.
No it’s not so supportive with people like you posting negative things the Girl is already down with out you telling her to stop treatment coz it can cause stroke what a load of shit if your that worried about stroke you stop your treatment and if your not doing treatment you don’t need this forum do you
Did you even have the IVF, my dear? Before my IVF, I signed all sorts of consents, and they do mention the increased risk of stroke. So, I am unsure which clinic treats you regarding the IVF. However, there are multiple side effects. Some of us do have them; some don't.
For anyone reading this comment this isn’t true at all- please don’t worry about IVF side effects except any mentioned by a reputable doctor. The nhs in Scotland offer 3 egg collection rounds and all subsequent transfers of any embryos created, they wouldn’t do this if there was any real evidence that IVF would cause additional issues that the nhs would need to treat, except in rare and exceptional circumstances.
hi my lovely, I’m so so sorry for what you have been through.
I’m not sure who you saw today - was it ARGC? Or a reproductive immunologist?
I found that for me there wasn’t ’the one lucky embryo’ or ‘keep going and it’ll happen’. And I hated that.
PGT A testing would be a good start if you’ve not had that already but it’s unlikely to help recurrent implantation failure, as even if you were only creating abnormal embryos, by this point one of them would have taken and miscarried if everything was going ok from an implantation side of things. So it could be just an implantation issue and your embryos are fine but you need to sort the implantation issue or it could be both an embryo and implantation issue and so if you fixed the implantation issue you may be able to use donor eggs etc or your embryos could be fine but the implantation issue after loads of trying to get to the bottom of it could be that you do need a surrogate. But I would be ruling out a lot more before that.
Recurrent implantation failure can be due to many reasons and I’m sure you’ve tested most things, for me I had to see a reproductive immunologist. Have you seen one? I had lots of tests done with mine and found that I would not get pregnant due to various reasons and so needed a really tailored protocol of medications. Including steroids, blood thinners, metformin and neupogen. The latter of which I would not have got pregnant without due to an incompatibility thing that they tested for me which I was told was super rare but I had that, I also had the MTHFR gene mutation so had to be on clexane my entire pregnancy.
I also had to have a completely different transfer protocol- standard medicated frozen was not working for me and not good with my body. I ended up doing a stimulated frozen transfer which was more natural on my body.
Basically what I’m trying to say is that yes there is a lot of toxic positivity and what I found was the stats being thrown at me. ‘Most people don’t need this’ etc well most people don’t have recurrent implantation failure etc so I was already on the wrong side of the stats so maybe I would be the other side of the ‘most people’ stats.
I really felt I had to take a lot of matters into my own hands and push and push. And it did eventually pay off after a substantial amount of money and time that I’m privileged to be able to have done.
That said there will be a tiny percentage of people who it doesn’t work for after everything, and we should be more open about this happening etc. There are some groups such as the ‘childless collective’ that do help with this and offer support.
I really really hope you can get this to work for you but I also am aware that the toxic positivity is so challenging.
Hi Wishinandahopin, as someone who has experienced repeated implantation failure I found your reply to the OP so helpful. If you don't mind could you DM me who you used as your reproductive immunologist please?
Thankyou Wishin ❤️ super helpful reply ...You hit the nail right on the head with that if it was an egg issue then something at some point would of atleast tried to implant....I have said this exact phrase.I have been given steroids on past transfers with no results, my thing is though they haven't found exactly why it's happening and I definitely need it looked into more. I'm 41 now so for sure egg quality is entering the building.
I saw the head Ivf specialist at the clinic today . I can't say I have seen a reproductive immunologist separately, Usually the clinics I go to have it all there.
Hi Island I'm sorry to read such a long traumatic journey but I very recently echo your thoughts.Over nearly 5 years We've lost 3 babies, though I've been pregnant each one had downs or Edwards so died at 12 weeks.
Despite this and my age 45, we have continued to try and not been pregnant again since 2022.
We have looked at ivf etc but I have various health issues that keep rearing up as we go along.
I actually dread the trying now because I'm in a perpetual cycle of 2 weeks of trying 2 weeks of waiting for the last 2 years or the scary prospect that if I get pregnant at my age it will likely result in yet another baby loss.
I continue to try because I feel the same as you, where is my miracle, where's my happy ending after all this loss but you could be right, I feel like for 5 years my life's been on hold hoping for the impossible.
The last crush this year cane in April on my 3rd baby's anniversary my sibling rocked up to say she's accidentally pregnant, I was distraught and still am.
Her baby is due any day and I've just had another anniversary of our 2nd baby yesterday.
I'm dreading the baby's first xmas etc to come, seeing people get what I've fought so hard for by accident is soul destroying.
However, I feel like I can't give up just incase and it's a massive heavy burden.
I feel like trying and failing is detaching me from everything and I have zero worth in this horrible world.
I feel your anguish and I hope we both and anyone out there still ploughing for the elusive rainbow gets one. X
Oh Waiting 😔❤️ I'm sorry that it has been so difficult for you also ,I have also watched every single person in my life progress family wise while my husband and I have just remained stagnant.....people who where children when I started my journey are now having babies!!! I've gotten to a stage where I'm just numb when it happens now, I'm happy for them of course truly but I've made myself disassociate like a defence mechanism, its sad really , but I feel we will know when it's time to stop, I hope so anyway .it should be our decision. I'm sending you so much love and light and strength💗✨️hopefully we get to where we need to be soon 💖💖 Thankyou so much for sharing😘
Sorry for what you have been through and your journey. It’s taken me a long time to get here, what I felt worked for me was having the ERA, Emma and Alice, finding out I needed 2-3 courses of antibiotics and needing probiotics to get a good level of lactobacillus. On my last 2 rounds, embryos were PGD tested. Worked on on my 7th transfer but miscarried, but on my 9th transfer which has worked so far. The majority have been double transfers and also double donor.
I have been following jesspotter_xx on instagram and believe she was initially told unexplained fertility, she has been to fertilysis in Athens and has found that the cause of unexplained. If you go on her grid, she has a few stories where she talks about it, might be worth a listen to.
Thankyou Runner ❤️ this is super helpful for me as I'm having treatment in Greece.I haven't heard of fertilysis and I will be getting on to this !! I'm so happy you finally got there 💗 congratulations ❤️❤️❤️❤️ Thankyou so much 😘
Hello my lovely, sending you a virtual hug right now xxx I am so sorry to hear about your journey and I know how you are feeling because although I am now on the "other side", I had a very long and complicated journey too and I never thought it would be my turn. I used to hate when people told me "it only takes one". I spent my 30s trying to get pregnant and my son is my 10th embryo! Before that, I lost my first son born sleeping in the second trimester and had another 4 first term miscarriages.
The people who loved me the most, including my mum, at some point just asked me to give up because they thought this infertility and IVF journey had changed me completely and was destroying me. I have to admit I am a very different person (and mum!) because of it, but actually also in a positive way. For a long time, we also had unexplained fertility and unexplained recurrent miscarriages. We had a million tests, several surgeries, saw many different doctors and for me, what worked was excision surgery for DIE, PGT-A testing and the autoimmune protocol. I was on high dose steroids since before transfer, hydroxychloroquine which I also started months before transfer, heparin, aspirin, metformin, extra progesterone and a few other meds for other conditions I have. I also did EMMA, ALICE and ERA and had antibiotics and probiotics before transfer. Every time we had a setback we just kept going and tried to change something else for the next cycle.
The consultant thanks to whom I am a mum today told me once something that, at the time, I thought he shouldn't have said: "in his experience (and he was in his early sixties), those who persevere always get there, one way or another. For some it is an easier journey and for others a longer or harder one, but that is all". I decided to hold tight onto that thought and just kept repeating to myself that I would be a mother of a living child one day, one way or another. There are different ways to motherhood and I came to terms with that, but I just wasn't ready to give up. I was called delusional by people close to me and you know what? My answer to those comments was that I had decided that whilst the power of love and the desire to be a mum was stronger and made me happier than the thought of giving up, I would keep trying and that if I ever found that the journey to get there was making me sadder than the thought of being a mum, then I would give up.
It is a very hard and very lonely journey, but this forum was a great help to me and helped me get through some of my darker days and I am so grateful and will never forget that. Sending you so much love, light and hope xxxxx
I was prescribed hydroxychloroquine and as it takes a while to work, I had to start taking it 3-4 months before transfer. I was also on a high dose of steroids, because the first transfer I was prescribed steroids didn't work and that was with 15mg so next (successful) transfer, I was prescribed 30 mg since before transfer and I stayed on them for a while, tapering them down very slowly from week 9 or so, I think. So, I stayed on steroids until the second trimester. I was also on Clexane and aspirin.
If that hadn't worked, my next step would have been trying intralipids / IVIG.
Thank you this is really helpful. I love your consultants quote ‘those who persevere always get there, one way or another’, it’s really spoken to me as I don’t feel it’s a view shared by many fertility doctors. Who is your consultant? Not sure what area of the country you are in…
My personal experience with UK clinics wasn't that good and I decided to move to a clinic in Spain in the end. I believe we are not allowed to name doctors here, but please feel free to PM me. Good luck! x
"My answer to those comments was that I had decided that whilst the power of love and the desire to be a mum was stronger and made me happier than the thought of giving up, I would keep trying and that if I ever found that the journey to get there was making me sadder than the thought of being a mum, then I would give up."
I love this ❤️ Thankyou Eternal ❤️ I agree with everything you have said but it's been a test of perseverance for sure. I'm having treatment in Greece and another of the doctors here are not so big on Era/PGa ,,the reason I decided to see this guy here is because he was one of the first people to do PGA here...I'm going to keep going regardless of his "opinion " and even though he has gotten to me ,,I'm still hoping his skills are the key. THANKYOU❤️
Good luck, my lovely! Definitely a test of perseverance but if you heart tells you you have to keep going, keep going Can you just perhaps insist on some tests you want to have done even if they are not so keen on them? My consultant wasn't that keen on ERA either but I persuaded him to prescribe it for me! I'll be thinking of you and cannot wait to hear positive news from you. Hang in there, my lovely! xxx
Remember some doctors just don't want you on the clinic books as 'you won't add to their success ratings'.
I think as well as the ££££s involved, this is another factor. So doctors are wedded to 'maintaining' certain ratings. I think this is also important to consider when choosing a clinic -they can have sky high birth rates, because they don't treat patients who present any elements of 'risk' to them.
You know when you are done. It's a body and mind and heart decision. And one that no one but you has to live with, so no one but you gets to decide.
We're nearing the end of our journey and, if it's helpful, our decision factors are purely down to how much emotional energy we feel we want to invest and also that we went into this to create life. For us, it is now getting to the stage where that desire is actually doing the opposite and reducing our life in many other areas (existing family e.g. parents, siblings etc; work; social).
No one can weigh those kinds of factors except you. And no one can decide whether using donor gametes rather than exhausting your own is right for you. At best, the advice clinics give is based on clinic success rates, but that's not the same as whether it is a choice you want to make at this point, or ever.
Weigh up what matters to you. There is no right or wrong answer there, because only you have lived and will continue to live your life. You get to choose, and you get to weigh what (if any!) regrets you find easier/harder to live with.
Sending love and hoping you find peace within yourself, whatever you choose and however it works out.
I appreciate this answer alot ❤️ & thankyou,,, because it should be my decision and unless I have proof otherwise then I think doctors should really watch what they say, especially in the profession they chose to do. Its shameful to think that some of these doctors put stat's and money before a person well being on any medical profession really.Thankyou Granola❤️
First of all… I don’t think you’re insane. I think a huge majority of these doctors don’t know what they’re doing. I was in the same boat unexplained infertility.
Test results all normal ….husband sperm fine. Was told I was just old. After going through IVF was told I was completely futile. Even though there was nothing wrong with me…just old.. Went to another doctor years later. I’d given up at this point …only did it for my husband …she did all her test…told me if I had been going to her years earlier I would’ve had quite a few babies by now. And now that I was really really old @44, the chances were only 5 to 10%. I wasted so much money. I might as well have burnt it in the street… along with the money, so many tears. I even told my husband to leave me over and over again.. Start fresh, with a younger fertile woman. I love my husband more than anything. I’m sure you can imagine I was mentally exhausted after so many years of trying. After I had given up all hope and only did IVF again at this new clinic in the USA for him…The doctor put me on growth hormones due to my age and an estrogen patch. After the first try, I was pregnant with my little boy and an embryo in the freezer. I am now 46 and hoping beyond hope that that little embryo works also. I really do believe a lot of these fertility doctors just have one cookie cutter recipe and keep trying and trying it and if you don’t fit into the cookie cutter recipe, it’s obviously your problem. The huge giant ambiguous unexplained title of Infertility is just their way of not have no to admit they don’t know or are incompetent…. perhaps I sound jaded because I am…. Because unexplained Infertility is a catch all excuse for something diagnostic they missed… PS I am in the medical profession ego is a disease that is rampant 🙁
Sending positive thoughts your way lovely. Would you mind sharing your growth hormone protocol as it’s something I want to raise with my doctor, I know he doesn’t currently use it. And when did you use the oestrogen patch, was that after transfer?
My DR had me on Saizen ( growth hormone) from ( I believe) Dec 26 to Jan 18th my retrieval, for prvious3 months , DHEA, omega 3, pregnancy multivitamin, Vitamin D, COQ10 and I had myself on NMN supplement… check out NMN / NAD+ supplements for increased egg quality, and Fertility. There are groups on Reddit talking about how it help them with quality and after years of IVF getting pregnant on their own. Also start looking up medical journals about on it. There is a doctor at Harvard medicine in the US that has been taking it for 10 years and has published all his and his wife’s blood results, and all the markers of age are slowly going backwards in his blood results. It’s a fascinating read. I had a lot of trouble getting the supplements in Canada, but when I lived in the states, I had no problem getting them. I’m not sure what the UK is in regards to access … but they’re not that expensive. And I’m going to definitely start around of them for three months like I did before before my frozen embryo transfer.
Thankyou Halifax❤️ and that's exactly why I'm so angry , because it's either that or I'm insane....because it was like did you see something in my file while you quickly turned the pages while simultaneously looking at me ? He didn't even look at my file ...as a medical expert are you not here to help me find it ? It's so unbelievable to me that I have started questioning myself also.... but thankyou for making me feel a little more reasonable 🤎 I appreciate you❤️
Hey! I'm also a long timer. Just shy of 13 years of ttc, 3 ivfs in the UK (all my stats are on my profile). I emigrated to Auatralia in 2019 and took some time out. It was during this time that I looked at what my body was producing egg quality wise, just wasn't good enough. So it was at this point I decided younger DEs gave me higher chances. Those stats I would have never been able to match myself. I haven't done pgt-a on my DE, they came from my 30 year old very fertile sister who has gotten pregnant first time each time she has tried. As soon as I went to DE my chance of falling pregnant increased substantially, yes there was a chance of abnormal embryos, but that was less than 25% (so effectively 3 of my embyros by my docs stats should be normal). I know you aay you are getting good eggs, but age is all my FS talks about when it comes to quality. Next step after a first failed transfer from my sisters eggs, I became a little unwell and I took another year out to work on my health and getting some conditions under control. In Feb this year I went to my FS at 40 years old, never having been pregnant and told him my next embryo is pretty much my last hope, that I wanted to do all that I could even if it hadn't been proven to work. I have this time done a frozen transfer with my first time on steroids. I have done clexane previously and we've done that again and I have for the first time seen those 2 lines. I am still very early days but to get to the 2 lines is a miracle. I don't even think I've been told in the past that I had unexplained, no one could just explain (they normally just stare at me).I truly believe implantation failure is my cause but pinpointing the reason behind that, the experts have never acknowledged or found a reason. I have been telling them for years, the fact I've never been pregnant it must point to an implantation issue. I now believe for me it is immunological and that the steroids are my answer to my pregnancy. You more than anyone know your body xx
Huge congrats lovely!! Can I ask about what your steroid protocol was? I have unexplained infertility and feel that implantation failure is also my issue and have debated immune testing.
I started the cycle on 10mg of prednisolone and on day of transfer, I was upped to 20mg. I continue on this until week 10 which terrifies me to stop. My immune system is so strong. I plan on pushing to remain on a reduced dose as long as it's safe to do so. I know someone with lupus who remained on it during her pregnancies and all was fine so if there is no harm, I cannot see why they won't. With this I have been on 20ml of clexane, intramuscular progesterone and progynova.
Do you have any diagnoses that would impact your immune system?
The only thing is o know I have adeno and had lap surgery for endo. I’m otherwise unexplained. But I’ve only had one chemical 2 years ago, and a miscarried and IVF pregnancy 6 years ago, so they don’t yet consider RIF. So immunology hasn’t been suggested, my age just gets blamed.
Congratulations Annie ❤️ That is huge ❤️❤️❤️ I'm in the same boat as I too at this stage am convinced it's an implantation problem,, I want someone to find exactly what is causing it so we can see if it's fixable. I have done afew transfers with steroids but without knowing the cause how would they know how much I had to take and for how long ? I'm definitely going to start pushing immunological side of things now,,,,, ,, so much time has been wasted though that I will probably have an egg issue now too !!!😖 it's exhausting but I'm glad you got there, hopefully I will too 💖 thankyou so much for sharing
Your questions are exactly what I keep asking myself. I still want and need to know what has caused this for me. And what my immune issue is.
Good luck. It is exhausting but no one will make this happen but you. I feel that even my fs isn't interested in really why I've had issues or what the issues are. Sending you strength xx
I’m intrigued to know which doctors saw. I can hugely relate to being filled with hope when going in to see somewhere and leaving feeling like things are actually hopeless. I have a consult with a very highly regarded doctor in Greece who basically agreed with my U.K. doctor that I had no hope with any fertility treatment and to keep trying naturally. I don’t think a lot of doctors at all understand how much they hold our hopes and dreams are in their hands when we see them.
I don’t think it’s toxic positivity, it’s hope, but I wholeheartedly feel the same way as you.
Have you had repro immunology testing? As others have said PGT-A is another avenue to look at but I don’t think it’s the sole answer for a lot of people.
If I had my way I’d see Dr Jermone Check in the US, he is great with unexplained infertility and a lot of people conceive with just timed intercourse with him.
Hi Monts❤️ I'm in a clinic at Greece too at the moment ,this guy I just saw is apparently the best there is here 😏 after my experience though ,I'm not sure.I'm going to start pushing the immunological side of things more because I'm convinced thats where my problem lies. I have gotten mixed opinions by doctors on PGT-A.... but at this point it's the only thing that I haven't done and I'm willing to try it now.
I wonder if we spoke to the same guy ( Mastrominas) ,and unless they have stone cold evidence that say its impossible then they shouldn't be telling you to try naturally, if it could happen naturally you wouldn't have gone to see them in the first place.
I know what your saying about hope and your right it is , but this experience brought up a feeling of my hope being unfounded , like hoping for a unicorn to land in my backyard 💖
May we get our answers swiftly dear Monts❤️❤️ thankyou for your reply ❤️
Hi Islandgrl,So sorry to hear you've been struggling so long. I'm 41 and have been trying for 9 years. Dr's definitely get it wrong.
Found out during 1st IVF husband had antisperm bodies. When the cycle failed, I asked if it was possible I had immunology issues too and the consultant laughed and said I couldn't have a test for that because the chance of us both was minute.
Anyway 7 years down the line, £30k in IVF, tests etc. Guess what? I do have high natural killer cells.
I definitely recommend getting a 2nd opinion.
I'll keep my fingers crossed for you. Hope both of our luck changes🍀
Thankyou Midge ❤️❤️❤️ it's the waste of time we don't have that kills me.im starting to question if any doctor really knows what's going on at the end of the day .Thankyou❤️
Hi, it’s such a shame to come out of appointment feeling like that. I get that medical professionals need to be matter of fact sometimes but there is a way to deliver a message!!! Don’t give up, listen to your instincts and if you want to and feel like you can keep going then that’s what you should do. You don’t want to look back and have any regrets so follow what your heart is telling you. Every single one of us deserves to explore every option.
I wasn’t going through it for as a long as you but had to wait 7 rounds and 4/5 years before I got my BFP and a pregnancy that lasted beyond 7 weeks. I knew that I just needed to keep going until I felt like I’d explored all options and was ready to give up the dream.
I changed clinics and went for PGTA testing given that I was almost 40 when I started back to back egg collection cycles.
I’d be more than happy to chat if you have any questions or just want to talk/rant, although we are all strangers I feel this network is a great source of strength and those on here are the only ones that truly understand.
I’m so sorry for all you have been through & your recent experience with a doctor. As well as the way you are feeling about toxic positivity.
I’ve recently had a follow up with my consultant after my third transfer using my younger sisters donor eggs failed. As I usually do, I prepared with my own research & had some questions for her. I look on here every day & take screen shots when I see other tests & protocols that have worked for others. As soon as I mentioned my own research & reading & this online forum she did not allow me to speak & told me not to look online & just listen to her & other medical professionals.
She is the lead in Recurrent Miscarriage at my hospital so therefore lives & breathes it every day but I’ve realised I have done for the last 4 nearly 5 years too. I constantly read & listen to podcasts related to IVF & TTC. I have even recently read a report written by ESHRE on Recurrent Implantation Failure after a Dr recommended it on the Big Fat Negative podcast. In this report it does not recommend the use of Intralipid Infusions but I just spent £430 & travelling miles to a clinic that offered it on recommendation of my consultant. I still got a negative. I have been meaning to email her with the questions I wanted to ask for the past 2 weeks but I have still not found the motivation to as I expect her to not entertain my suggestions. I am not medically trained but I am in education & do a lot of reading so I do think some of my research & questions are valid.
After starting this quest when I was 39, I am now 43 & my mental health is at an all time low. I’ve had 9 x IUI’s (1 x BFP ending in a long drawn out MM finally confirmed at 11 weeks) 1 x cycle of natural modified IVF with my own eggs (only got 2 eggs, both good quality on day 3, transferred 1 & the other wasn’t good enough to freeze on day 5. BFP & saw heart beat at 7 weeks but then gone by a private scan at 10 weeks). Moved on to DE using my younger sisters 31 year old eggs. Got 26 eggs, resulted in 17 embryos all frozen & quarantined for 3 months. I’ve had 3 transfers of good quality embryos all BFN. In my recent transfer I was on steroids, hydroxychloroquine, antibiotics, progesterone pessaries & tablets, oestrogen patches, blood thinner injections, probiotics plus the Intralipids.
I’ve got 3 x embryos left. My consultant said they can’t give me any higher meds. She has recommended a break until the new year. This has upset & shocked me. I was ready to go again straight away & the Intralipids stay in your system for 4 weeks so I didn’t want to waste them. She said it was more important for me to be in a better mental & physical state before trying again. She will consider letting me transfer 2 embryos in January but she was dead against that in August due to the risk of twins & due to my age. I know clinics are against doing this now but it must be because we are running out of options. I can’t decide if that will be a good idea or not. I know others have had increased success with that & twins will be wonderful but also very tough as a single parent.
She also recommended time off work to heal & process. I’m a PE teacher in a very competitive school so I am always very busy & it is very physical. I am exhausted & drained from the repeated disappointment & failure. Then picking myself up & trying to put a brave face on. I am on a complete switch off from school & have been locked out of emails etc.
I am now trying to rest & recover as well as planning how I can change my lifestyle to be in a better physical & mental place going forwards & before I try again in January. I’ve booked a holiday for some sun in half term as I didn’t go away in the summer as I was on meds & waiting for my transfer.
I am looking for more regular counselling as I need to be able to offload my thoughts & feelings without judgement. My friends & family try their best but they just don’t know what to say or do for the best.
I have been on a couple of Fertility Network UK online sessions recently about dealing with fertility struggles in the workplace & the best thing that I have taken is to show myself more self compassion & acceptance. I’m always very hard on myself & feel guilty about work & letting people down but I’m trying to accept that I’m going through a really tough time & that my feelings are valid.
I know there are lots of people who accept that it’s not meant to be & live a life without children. I have great friends & know I can enjoy a good lifestyle like I’ve done in the past but I know I will not be content or happy.
I have started to consider my next steps if the last embryos don’t work. I think I will try abroad before then considering adoption.
I’m sorry my post has gone on so long but I’m just getting all my thoughts & feelings out.
I really hope it happens for you & wish you all the luck in the world as well as anyone else on this very tough journey.
I feel less alone looking at this forum so thank you to you all x
Wishing ❤️❤️, I know exactly how you feel and you are not alone,I too also have to remind myself of this, we can only do what we can.I love that you where able to get your thoughts out like I also did with this post ...because we all need to get it out in an environment where we know that amongst each other atleast there is an understanding that our own group of people unless they have gone through it themselves, can never understand. I up until now have always been afraid to express my ideas fully with a doctor because they always seemed to shut me down,,,or they would say something so out of pocket that I would be shocked and try to keep myself from spiralling. I'm not going to do this any more....I've decided to become super annoying until they listen and I'm going to demand progress, and at the first sniff of time wasting then I'm out the door. I'm sorry your going through this too...you keep doing your research and if you see no progress go to someone that will listen...in the meantime we are all here❤️❤️ sending you a big hug and lots of luck xoxo
What I'm realising more and more is the extent to which you have to do your own research, and then politely present it somehow to your doctor, in the hope they might actually look at it, and listen. Not always easy given the arrogance of some docs, who also like to stick to their favourite protocols and wack every woman on the same one.
Sharing this research created by a woman who has really Done The Work, and sourced add-ons for herself, to positive effect given her eupoloidy rate.
Her clinic is in Malaysia and I can connect you do her if you have questions.
She has shared this simply to help other women, hence why I'm now passing it on, in case there is something in this that could help you.
I really object to docs dishing out "unexplained fertility" diagnoses - doesnt that simply mean "unexplored"? Lazy medicine. Hence the need to do your own research, which seems madness when youre paying experts thousands, but it really does seem to be the way....
I had 3 rounds on NHS back in 2019-2020 just before covid, all fresh transfers, only ever got 1 good quality embryo from approx 7-8 eggs collected but none worked. We recently tried again private, we don't really drink but also both cut out caffeine, no ibuprofen and tried to improve our diet. We ended up yet again with 1 good quality (3ab) embryo out of 7 eggs collected but this time we froze it & transferred on the next natural cycle. Got a positive result at the end of the 2ww but unfortunately another week later (a couple weeks before the scan was due) I bled & lost it. Gonna start round 5 next month & increase our protein intake to see if it improves egg quality. It really is hit & miss, it just depends on your circumstances, mental, physical, emotional strength/durability & affordability as to how long you keep trying - I wouldn't let anyone tell me what to do UNLESS they specifically said it 100% would not work but saying that I know people who were told they'd never have children and they got pregnant before me. Good luck to everyone trying 💓
Have you done immune testing? I've moved to a clinic in the Czech Republic and after immune tests (£400 not thousands like you'd be charged here), they have found an issue and I'm being treated with immunoglobins. This combined with PGTA testing gives me more hope for my next transfer (transfer number 8).....we can't just keep doing the same thing over and expect a different result. Happy to provide more detail re the clinic if you want to message me. x
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Can you just perhaps insist on some tests you want to have done even if they are not so keen on them? My consultant wasn't that keen on ERA either but I persuaded him to prescribe it for me! I'll be thinking of you and cannot wait to hear positive news from you. Hang in there, my lovely! xxx
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