It’s been a while again since my last post, it was a crazy Summer term at work this year, well it always is but adapting to having Ted to think about too was harder than I expected. I’m used to working flat out and I thought I was used to exhaustion but I realise now that my perception of tiredness was quite laughable now that I have him I really know what tiredness is. However as always I know how lucky we are and wouldn’t change it for the world, but if I didn’t tell you that it’s not easy and I didn’t talk about Ted then you wouldn’t get the open honest me that you always have. I know that Ted has given so many of the women that follow my blog hope and determination and I feel like he is extra special because so many of you love him and his story too, so thank you for that.
This month I held my second recurrent loss support group which was very well attended and was quite overwhelming for me compared to the first one. Both times I have had a sense of panic inside my stomach at the beginning questioning myself if I should be doing this and if I’m the right person for these women to lean on, but then by the end I feel a sense of warmth in my heart and also a feeling of achievement that I can do something positive after the two awful years I had. I also feel totally humbled that you ladies put your trust in me to delicately help to manage your emotions and coach you through being able to cry on each other’s shoulders and that we all understand each other. I enjoy being a part of your journey and you WILL get your rainbow babies, I have been made an honorary god parent to so many children that don’t even exist yet but I love it, I really do.
Some exciting news is that I had a meeting with the local council a couple of weeks ago to start the process of becoming a registered charity, it was very daunting and will be a lengthy process but something I want to do, to be able to help me to continue providing the support and bracelets long term and to be able to apply for funding grants and hopefully encourage people to take on challenges and fundraise for CFQ. I also in a way would like it to be a bit of a legacy for my babies, something that I did for them and for all of the others too that have touched my heart and there are many.
In the last post I talked a lot about progesterone and how I strongly believe that it can help a lot of women with recurrent losses (I have said this since 2017) but more recently the Tommy’s prism trial showed that in can help ladies with recurrent loss and spotting in early pregnancy. I know a lot of ladies have still continued to have problems having it prescribed and that a lot of gps are still refusing and saying that you need to be under a consultant, just keep pushing and be forceful that you want to try it, go with ‘the research shows there is no harm in trying it and therefore I want to try it with my next pregnancy’ you may be told that it can prolong a miscarriage and that is true yes it can but at the end of the day what’s an extra week or so of hell when you have been through it so many times already, as long as your prepared to have early scans to check if the pregnancy is viable I just don’t see how they could possibly outweigh the chance of it working for you. If you want more proof that it can work, then read on…
Around a week after I got home from hospital with Ted my sister called me before bed one night to tell me that she was having a miscarriage. What a punch in the face! After all the heartache we had to go through with four losses and now it was happening to my sister, my first thought was when will we ever get a break! I did the usual of reassuring her that it probably was just very bad luck and that it happens to 1 in 4 and although it’s terrible it probably wouldn’t happen again… you know it all you have heard it before… blah blah blah
Sure enough it was to happen a further two times, all three of these were very early miscarriages and would probably fall under the bracket of chemical pregnancies. The frustrating thing as I’ve said previously with chemical losses Is that because the hcg begins to drop rapidly and never really gets that high in the first place, it can be very hard to prove to medical professionals that you were even pregnant, let alone get it registered as a miscarriage on your medical records. If you have a chemical pregnancy over the period of a weekend the chances of it being detectable in your urine or blood by the Monday can be pretty slim, obviously it depends on your hcg level.
Your hcg level can begin to drop before you even realise as it’s not measured and monitored as routine in the uk, most women would never know. For some women they find out they are pregnant at 3 weeks and then at 6 weeks start to bleed and miscarry and have spent 3 weeks thinking they are pregnant and having all of the excitement that comes with that, when actually their hcg could have started dropping two weeks earlier they just had no idea and until you start to bleed you have no clue that it’s over. When your hcg begins to drop your progesterone drops too which then makes you start to bleed, hence why if your taking progesterone and keeping your levels high you can potentially be stopping the bleeding starting so if you don’t know your hcg level or have a scan the pregnancy could have ended and you wouldn’t know it.
This then can also lead to women thinking they had much later losses and researching and looking into causes for their miscarriages at 8/9 weeks when their issue potentially is failed implantation/progesterone but they don’t consider that because they believe they got much further. Obviously any ‘normal’ person would not know any of this, it’s just us ‘cray cray’ rpl women that know all of this and people often question whether it’s healthy to know all of this and to become obsessed with your hcg levels and progression however personally for my own sanity I just needed to know when it was over and dragging out my losses even further would not have been good for my mental health, but then I do know for some women they don’t want to know because they want to hold on to the thought that they are pregnant and it might work out that little bit longer and I think there’s no harm in that, everyone is different.
Anyway I digress, my sister had her third miscarriage and that one was put on her medical notes as I encouraged her to go to the doctors and request her levels whilst still positive, I even rang the doctors pretending to be her myself. It’s mental torture going to the doctor and saying I was pregnant and them saying your not, she even took the photos of all of her positive pregnancy tests but still only one of the three pregnancies was recorded. The losses all being very similar pointed towards a hormone/implantation issue I thought, alongside her having super long cycles and late ovulation it seemed like it could have been related to her luteal phase. (Diagnosed by the none doctor that I am 😂)
There would be no recurrent miscarriage referral unless she had a further two losses that were medically recorded so I suggested going to the spire to see a private consultant hoping for progesterone or some testing. Unfortunately this was before the Tommy’s trial results that were recently published and so we did not have that on our side. We purposefully booked the nhs consultant that I had my love hate relationship with and his face when he saw me walk in with her was amusing to say the least. Like with me he insisted it was probably just bad luck and if she was to continue having issues for a whole year then she could look at the infertility referral route as opposed to the needing to have two more miscarriages route hurray! Not!
My sister suffers with bad anxiety and always has her whole life and now having this thrown at her, I wondered how she would ever cope but I think she remained positive because she knew I had got there in the end. I knew that she didn’t have the option of just going to a private clinic in London and that it would have taken them years to be able to save up that kind of money. This is why I am doing all of this because I know that there are so many women that are discharged from the nhs with no known cause for their losses and private healthcare isn’t an option and so by raising as much awareness as I can about other options and routes and providing support through this blog and my monthly group I feel like I’m doing something to help.
The following cycle after taking her to the spire and having no luck she found out she was pregnant again. I was convinced that she just needed to try progesterone and that it would work, but there was no chance of that having only had one miscarriage on record and the current nhs view on progesterone. So this is the part where I did something really naughty, I knew that I had leftover progesterone from my pregnancy that was still in date, I calculated that she would need 112 pessaries to get her to a safe zone and so I contacted my fellow rainbow chasers and between us we had enough. I called my sister on my way to teach my Zumba class and suggested that she tried progesterone from that evening to try and save this pregnancy.
I knew that it was risky business and I wouldn’t recommend anyone taking something without medical advice or off anyone that they don’t know. However desperate times lead to desperate situations and I was just convinced she had a luteal/implantation defect due to her long cycles and super late ovulation. She was obviously very anxious and unsure about what to do and we had about 5 million telephone calls trying to make a final decision. We had to consider a lot of things such as, if this was a bad egg or sperm and was a pregnancy that wouldn’t survive regardless that the progesterone wouldn’t save it and we only had one shot at it because I couldn’t get the progesterone again it was just by chance that me and my friends had enough left over between us.
I wasn’t sure with her anxiety if she could process the idea that even though it may work to get her past her danger zone, if she was to say lose the baby at 8/9 weeks due to a chromosome issue, she then would have the torture of not being able to try it again, unless of course she saved the money and afforded to go private. Also it was a scary thought taking something for 16 weeks of your pregnancy and not telling any medical professionals that actually it was her sister that diagnosed her and treated her who in-fact is a dance teacher and has no medical training whatsoever ha ha… we have to laugh.
Well that night she started the pessaries and put her trust in me that I knew what I was talking about, I’m now expecting a baby neice in the Autumn and we all feel so lucky. I’m expecting they she may name her Samantha after me or crazy fertility princess maybe 🤷♀️😂 joking aside though, she is a little miracle that will bring them so much happiness and a cousin for Teddy too.
Since all of this happened the prism trial result was published and so it SHOULD be easier for recurrent loss patients to get progesterone, however as I always say, you must fight your corner to get what you want. I have people contacting me weekly asking if I can attend their appointments with them and do the talking, which is very flattering and overwhelming but I’m pretty sure our local consultants in Hull are sick of hearing my name! Knowledge is power, just remember that! Even when you feel lost and hopeless and your going to give up your fight, just remember you have the ability to fill yourself with knowledge and to come back fighting to get your baby.
FIVE – perfect timing for me to tell you about this rainbow chaser, if her story doesn’t make you come back fighting then I don’t know what will. She is one of the strongest ladies that I have come across on this journey and continues to amaze me with her strength and determination to get her rainbow baby. Five started trying for a baby in the Summer of 2015, she conceived fairly quickly in November 2015 but had a lot of worry with the pregnancy as she was spotting the whole time, originally hospitalised as the pregnancy was a suspected ectopic but soon enough it was confirmed this was not the case and and 3 weeks after finding out they saw the heartbeat at their scan.
Sadly the pregnancy ended in December and she had surgery to remove the pregnancy which resulted in left over tissue causing an infection. In the new year they decided to try for a second time and conceived quickly again just 2 months later. The start of this pregnancy was so stressful as again there was the element of spotting but also in the very beginning the hospital kept questioning whether this was a chemical pregnancy as it couldn’t be seen by scan, leading to more anxiety and apprehension. The hospital had got it wrong and there was a heart beating away, during one of the many scans the sonographer and five had spotted something that looked abnormal, it was a small shape above the baby. At 12+5 they had a scan with a foetal medicine specialist who confirmed there was a problem with the babies umbilical cord being too short and also a growth on the babies tummy which looked like a large cyst. The specialist confirmed that some of the babies organs had not developed and sadly that if the baby was to survive the length of the pregnancy that it was highly unlikely the baby would survive after birth. This news devastated both five and her partner and the pain they felt was unbearable, the had the termination two days later and to add to their agony they were told that the baby could not be sent for testing ‘as it was only their second miscarriage’ so they would never know the full story of what was wrong with their baby that they loved so very much.
The months passed and she became an addict to peering on sticks and living her life in two week windows, sadly in Sept 2016 she had a short lived chemical pregnancy, in a way she was treat like this was a blessing she should be thankful for because she had now qualified for nhs testing. I know for a lot of women it’s like it’s some kind if board game of snakes and ladders but they never seem to climb and ladders. Yet once you have reached your 3rd loss you have reached some sort of bonus level achievement of nhs rpl testing. They had decided not to wait for the nhs testing as she also had other health issues they decided the best option for them was to pay for the testing to be done privately in London. All the standard testing came back as normal apart from a borderline blood clotting result and was advised heparin as a precautionary measure for her next pregnancy.
When the nhs appointment finally came around, five was just assured she had, had all of the testing and to just carry on and try the heparin next time as she had already been advised. Sadly there was another chemical pregnancy in April 2017 which ended even earlier at 5+1 gestation. The heparin hadn’t worked, the hospital advised that she had a hysteroscopy. This is a surgery that involves an in-depth look at the uterus and Fallopian tubes to check for blockages or anything else that could be causing fertility issues and miscarriages.
The wait as ever was a long time to wait, a week before the surgery was due she peed on a pregnancy test just because it was the only one she had left and to her disbelief it was positive! She hadn’t even been trying and actually even avoiding because of the impending surgery. Again it was a very slow start with confusion around spotting and whether or not this was another suspected ectopic pregnancy. She paid for a private scan and there before her eyes were two tiny dots on the screen, twins. When you have gone through multiple losses over and over this is the stuff dreams are made of two babies at once. Soon after she attended an nhs scan to check on the twins and couldn’t believe it when the sonographer said the twins had gone and she couldn’t see them in the uterus. She couldn’t believe what she was hearing and out of pure desperation booked a further private scan the following day and there they were, the twins were back. This was pure heartache because sadly they no longer had heart beats and this was another failed pregnancy, furthermore this clarified for her that the heparin was not the answer as it had not worked again.
It was at this point after losing 6 babies that five and her partner decided to consult ‘the king’ as I have referred to him previously. Five had the full works of his extensive list of very costly tests, the same as I did. The results showed that there was no clothing issue and therefore heparin was never going to be the answer. She had a normal amount of natural killer cells however when put in a pregnant state her cells were high activated and aggressive. So she was to be put on the full immune protocol in her next pregnancy. Both her and the consultant were concerned that she had not had a period or normal cycle since the loss of the twins and so it was best to go ahead with the hysteroscopy surgery. It was kind of a relief when the result came back all normal from the surgery, but this didn’t help that something was clearly wrong with her hormones and cycle.
The consultant put her on hormones (estrogen & progesterone) to help thicken the womb lining, because the lining wasn’t getting thick enough the drugs had to be increased but this then stopped her ovulating on her own. So then she was put on the ‘super ovulation program’ I think I may have explained what this is previously but it is a stimulated ovulation program using a drug called letrozole to mature the eggs and after a follicle scan each month you are given a timed trigger shot to release the egg(s) sometimes multiple. You are able to do the program for only 6 cycles before you have to give your body a break and rest from the drugs so you really do feel like it is a race against time.
Five was on a rollercoaster every month of so many drugs and scans trying to active a pregnancy so that she could put the protocol into action. During her 5th month of the program she was copied into a letter to her fertility specialist from her neurologist saying that an mri scan had been preference for her seen as she had, had a 5mm micro adenoma (tumour) on her pituitary gland back in 2014. This was the first she had ever heard of the tumour 4 years later! She booked straight in for a private mri scan and there was the now 12mm macro adenoma. She was sent to hospital and diagnosed with severe Cushings disease, this explained why she had so many other health issues that had absorbed her life for the last 4 years and also why her cycles had stopped and also ovulation.
She was put on the urgent list for surgery to have the adenoma removed and told she must not get pregnant as the tumour would grow. She had the major surgery on 26th January 2019, the tumour had caused major damage to her pituitary which is the master gland that controls every part of your bodies function and hers has now failed. She did a short stint in intensive care and frightened us all to death but still managed to fight back and with her good sense of humour too. She is now left with no hormones, adrenal insufficiency and a whole host of terrible illness to manage. She is so strong and amazing and I think about what a fighter she is most days when I thank my lucky stars that I have Ted. She is now infertile and is awaiting an appointment with a fertility specialist to see if she will ever have any chance of getting pregnant by replacing the hormones and going through ivf. She said, ‘it’s not over until it’s over’ she’s damn right there and so deserves to be a mummy and I will continue to hope for her, wish for her and support her 💖