“Super Fertile”?

Now that I’ve reached the end of my conventional recurrent miscarriage clinic journey and they’ve tested for everything they could, I’ve more or less come up negative for everything that could cause recurrent pregnancy loss. Our case is now “unexplained.” I guess medically speaking it’s a good thing not to have something wrong with me but strange as it sounds I want something to be identified, something to be wrong with me so it can be treated. I need answers.

The next step in my journey has lead me to a specialist Dr. Q who is so different to the other RMC’s. The primary focus is the lining of the womb. She’s told me I’m a textbook example of someone who is “super fertile.” At last, a possibility, something I can hold on to.

Click here to read about the Super Fertility Study

A normal womb will be selective when approached by fertilised embryos and may even take six months or more to choose the best quality one to implant. Apparently my womb isn’t selective enough and allows any old embryo to implant regardless of its quality or viability. A problem with the lining of the womb will cause this to happen.

The proposed treatment protocol is a course of 400mg progesterone daily started from ovulation for either a week or BFP and to continue if BFP. The good news is that the progesterone will increase the thickness of the lining of the womb which will make good embryos really work at implanting and the bad embryos won’t have a chance. The bad news is that the progesterone will make it harder to get pregnant.

But my main concern at this point is could all five of our fertilised embryos really be that poor quality? They won’t know for sure. If it’s a case of constant chromosomal abnormalities then PGD IVF might help our chances.

But Dr. Q tells me that it might not be that simple. She suspects I might have the presence of high natural killer cells in the womb which will make a nasty environment for fertilised embryos. The cells increase blood vessels and oxygenation which isn’t what you want when fertilising an embryo. Who knew? A simple biopsy will be taken after ovulation to check the levels and if they are higher than normal Prednisolone will be prescribed.

Click here to read about the endometrial natural killer cells study and recurrent miscarriage

So it’s the next piece of the puzzle. The next thing to try out. Keen to get cracking.

Shared experience : Miscarriage support group

Tonight I attended my first session at a miscarriage support group.

I was hesitant at first, unsure it would be the right thing for me but now I’m glad I went.

Although the experience was very heavy and gut-wrenching and most of us were teary the whole time it gives me some comfort that I am not alone. And as much as I wish others don’t have to suffer what I am suffering, there’s a bond there that I don’t get anywhere else. People who actually understand how I feel. People who aren’t able to cope either. We can share that commonality. And it helps to lift the weight a bit off my shoulders.

It has become so hard to talk to friends or family or even counsellors about my recurrent losses. I’ve more or less just stopped talking to anyone. But having people around that can empathise means more than I ever thought.

My medical journey to NOW

The journey to now has been a complicated one.

Having decided we weren’t ready to bring a child into this world until we were somewhat settled into a home that was comfortable and made an income that could provide for another member of our family, we left the trying to conceive part until our mid to late 30s thinking we’d have no problem in the conception department.

I don’t know why I thought this as I’ve been plagued with problems with my reproductive organs all my life, having dealt with endometriosis, fibroids, adhesions, interstitial cystitis, chronic candida, multiple laparoscopies, cone biopsies amongst other problems.

It took over a year to conceive. In the meantime, given our age we were referred to our local hospital’s fertility clinic. They put us straight onto the NHS IVF list. Whilst waiting for our specified IVF cycle we conceived naturally. That initial feeling of naivety and joy at our first pregnancy feels like an eternity ago. I lost the baby at 7 weeks, miscarried naturally.

We waited the suggested cycle to try again and low and behold success. I lost #2 naturally at 6 weeks.

Two months after that the same thing happened, #3 was lost naturally at 5.5 weeks.

The fertility clinic was keen to start IVF anyway but it just felt wrong that we should be going through such an invasive process when conception didn’t seem to be the problem. The clinic finally agreed and they referred us to a recurrent miscarriage clinic.

More weeks went by waiting for the referral and I found I was pregnant again. #4 was lost at 5 weeks naturally. The RMC tested for their standard blood clotting disorders which came back negative despite a strong family history of thrombophilia and DVT. The clinic told me they thought it was all in my head and that the positive pregnancy tests I was getting after a missed period were actually just false positives. They couldn’t be sure but my AMH was far too low for success and I should consider donor eggs at this point. Discharged. Done.

Back to the fertility clinic. They can work with the low AMH. And we’re back in the queue for IVF. But it still doesn’t make sense to me. Why should I subject my body to such a rigorous protocol if we are able to conceive on our own? It won’t help us keep carry to term.

Another referral to a different RMC, this time St Mary’s. More blood tests, scans, a horrific HSG. A scan found a polyp which later turned out to be a recently implanted embryo. Pregancy #5 managed by the RMC. More blood tests, biweekly scans, consultations. The only thing they found was elevated clot strength determined by a thromboelastogram. Put onto 150mg aspirin and 400mg progesterone. Concurrently doing acupuncture and traditional Chinese medicinal herbs.

We hoped so much for this one to work this time. But it felt wrong from the start. Delayed growth, slow heart beat. But still a heart beat. That was something, right? Assured it was just delayed implantation we were sent home to rest and return a week later. Blood tests spoke volumes: declining estrogen, declining progesterone even though HcG seemed normal. At a routine 10 week scan we were told the baby’s heart stopped beating a few days previously. This was by far the hardest blow. No matter how prepared we were for another possible failure we were stunned when it happened again. I never had any bleeding, any cramping, any symptoms.

We waited to see if I would miscarry naturally but over two weeks went by and nothing happened. We scheduled in the ERPC and that was it. The tissue will be tested to determine if the fetus was chromosonally abnormal. If things come back normal I will likely be discharged from St Mary’s without answers. Terrified I will develop scar tissue from the procedure I didn’t really want done.

Where do we go from here? On advice from some ladies in a similar situation I’ve decided to try seeing Professor Q for a different approach. I’m hoping she can shed some light in what feels like an eternity of misunderstanding and doubt.

Giving thanks

This is a time when I don’t feel thankful for much. I’ve lost my fifth baby in the first trimester. I’ve been told I should consider donor eggs because of my so-called “advanced maternal age.” I’ve been told there is no explanation for our losses. I’ve been told there’s not much more they can do.

But sitting here in this very moment in time watching the sun dipping under the clouds I can still remember the little things I am thankful for. Without them I’d be lost.

I’m thankful for:

My eternally supportive husband
My precious caring kitty
Family
The few good friends who actually legitimately care and are there for me regardless of my meltdowns
Sunsets
Sunrises
Blue skies
The wind
The sea
Green green grass
Raspberry leaf tea
Raw organic juices
Footbaths
Electric blankets
Aromatherapy
My bed
Flowers
Summer berries
Music

Trying to cope

Here I am two weeks after my ERPC to remove the 10 week old fetus that died two weeks previously. I had been thinking that once the procedure had been done I’d be feeling better. Right? Wrong. I’m feeling worse. Progressively worse. I’ve got the sense that I’m drowning and trying to claw my way out of a well that is swallowing me up. How will this ever get better?

I’m one meltdown in. My kitchen got the worst of it. Screaming, crying, broken glasses, throwing any object in site. It wasn’t pretty. To be expected yes, but I sure wish it made me feel better. It didn’t.

Now I seem to be wavering between self-loathing and devout pessimism. Although rationally I know I didn’t do anything to lose this baby my heart won’t forgive myself or my body for letting me down. Nor will it forgive myself for taking the time I need to grieve. I’m continually beating myself up for being sad, knowing it won’t help our chances for the future. And I’m beating myself up for not taking the time I need to feel better. I can’t win.

If I was anxious about the future before this last miscarriage, now I feel like there is no future. Rationally I know we are doing everything we can to investigate the unexplained losses but deep down I feel like it’s never meant to be. Like I couldn’t possibly go through this another time. How can I find the strength?

Thankfully hubby has been the most supportive partner I could have ever dreamed of. He can handle anything, any of my tears and fits and pessimism and self-doubt. Always has an answer to everything. Where would I be without him?

It’s a good thing he’s here because I’ve shunned nearly every friend I have. I’ve gone from a bubbly outgoing person with lots of friends to a complete hermit. It sounds horrible but I couldn’t possibly handle it any other way. I have too many friends who are in a breezy carefree pregnancy, others who’ve just had one. All of which got pregnant month one of TTC and a long time after we’ve started trying. I can’t even bring myself to see them or talk to them. I’ve become the elephant in the room with those who know my situation which only makes me feel worse. It has struck me just how little people can know or understand about what it feels like to lose a pregnancy multiple times. No one knows what to say or what to do. I can’t blame them, I wouldn’t have either.

I guess they are all waiting for the old me to come back. But the old me I feel is gone and has been replaced with someone who is in constant pain and anxiety, who no longer has a sense of humour, who doesn’t want to talk small talk. Something inside me has died and I fear I will never get it back.

The only thing I feel at times that keeps me going is 1) hubby and 2) hoping that the next appointment, the next test, the next treatment will find an answer to the numerous unanswered questions. So I guess in that sense I haven’t lost hope yet completely.

Recurrent Miscarriage & Traditional Chinese Medicine

We struggled to get pregnant prior to the our last pregnancy and in an effort to try to right my body to invite another pregnancy we decided to start seeing a doctor of Traditional Chinese Medicine. Within one month of weekly acupuncture appointments, BBT charting, daily doses of dried herbal tea and following a strict diet of one egg a day, no fruit or raw food I was pregnant and feeling more positive than ever.

Once pregnant the protocol changed and became quite structured. Daily herbs increased to twice daily and I began accupuncture three times a week. I was advised to follow a strict regime which included:
Eggs twice daily
No fruit
No raw food
No tea of any kind
No exercise of any kind
Bed rest as much as possible
No carrying bags or anything heavy
No housework
Limit stress
No high heels
Do not raise arms overhead
No air traveling
No mobile phones or laptops
No alcohol or smoking obviously
BBT charting daily

As a gluten-free vegan this became a tall order.

Private blood tests became part of the protocol with oestrogen, progesterone, HcG monitored weekly. The results would assist the practitioner in deciding which accupuncture points to use. When progesterone levels dropped slightly 400mg progesterone was advised and I had to find a private doctor who would prescribe me progesterone, which I did. When oestrogen levels dropped, a supplement was advised but finding a private doctor to prescribe it was impossible. Something was telling me though that low oestrogen was part if a bigger issue.

All this was of course horribly expensive but I followed it without complaint. It was also a difficult protocol to follow without wavering but I did it. I found myself so terrified of veering from it and that I would cause a miscarriage if I didn’t follow the advice exactly. I became obsessed and was warned by the practitioner that I would be at fault if I didn’t follow every single piece of advice. I tread on eggshells everyday for 10 weeks.

Regardless of the effort however the pregnancy failed and I now find myself struggling with the decision of whether to go down the road of TCM again. I believe without a doubt that TCM can heal my body from the miscarriage and prepare it for another potential pregnancy but I fear that the anxiety and dread-filled anticipation from the pregnancy protocol will be too much for me this time. I want to reduce stress not add to it.

I have no doubt of my practitioners skill, and I believe his old world training is an unusual find here in the UK. I believe he is treating me to the best of his ability the way he knows how. But he plays his cards close to his chest and doesn’t give out a lot of information I feel I need in order to understand how he’s treating me and my baby. My lack of understanding just adds to my anxiety. I suppose I need to explore whether we can spare the financial burden on a protocol that is still so foreign and unknown to me. I also feel torn between the TCM advice and my western doctors, which contradict each other. Do I really have to choose between them?

What will be the winning combination, I still have no idea.

Recurrent nightmare

The dream I seem to be having over and over these days is one that haunts me in my waking hours. Probably something to do with the freshness of having been told 10 days ago that our baby’s heart was no longer beating and waiting for the impending ERPC this Thursday.

In my dream I can feel our baby is still alive and strong and wriggling comfortably about inside when they force me into anaesthesia and rip out the baby in an ERPC only to realise afterwards that they made a huge mistake and they should have read the scan report properly. They confirm sheepishly that 1) this was my last chance to have a child and 2) I will have a 99% chance of developing Alzheimer’s later in life as a result of my choice to have the ERPC but that not to be discouraged because at least I’ll forget about the need to have my own child. They briskly, sheepishly apologise and ask us to please leave quickly because the waiting room is filling up with happy couples who are waiting for their positive 12 week scan report in order to be discharged to a local hospital for the duration of their joyously uneventful pregnancies.

The strongest feelings I get from this dream? Dread. Regret. The recognition the authorities got it wrong.

Recurrent Pregnancy Loss : What Not to Say

Please think twice before you say things like this.

We’ve all had to deal with numerous hurtful comments from friends or family or medical professionals. Here’s a list of comments that have been said to me personally that I have found hurtful and destructive, even though they might have been well-intentioned. I have added the responses I wished I had been able to come up with at the time but in the shock of the moment these words sadly went unsaid.

Pretend the babies weren’t real. Try to forget as though they never happened
Errr, no can do I’m afraid. At the sight of a positive test every mother has already named that child, watched them take their first step, taken them to their first day of school, helped her pick out her wedding dress. It is real. A tiny heart beat in an ultrasound is very real. You can’t just switch off your desire to be a parent like that.

Well at least you got a little further this time around
This is not a consolation prize. A loss is significant at any point, at any age

Go on holiday, that’s how my friend got pregnant
Yes everyone has that friend who went away for a few weeks only to return to a blissful and straight-forward pregnancy. Trust me, if a couple of weeks on the beach was medically proven to allow me to carry my baby to term without complication, I would be the first in line.

Do you want to spend time with my baby instead to make you feel better?
No I do not. While I am thrilled that you and your baby and happy and healthy, this does not mean that your baby will take my pain away.

Maybe you should gain some weight
OK, sure there is an ideal BMI for conception and maintaining a pregnancy but come on, have you seen how I micro analyse every gram of protein to make sure I am getting the magic 75g daily? Or watched me count up the exact quantity of my “5 a day” veggies? Or heard me tell you that I cannot eat fruit or cold food because my doctor of traditional Chinese medicine tells me it will sabotage my kidney function? Trust me, I am already doing everything I can.

I’m sorry you are jealous of my pregnancy / new baby
Let’s get one thing straight. This isn’t about you. Don’t insult either of us by suggesting that that your happiness is causing my sadness. Because you know as your friend I am thrilled for you. But that doesn’t make my situation any less painful or traumatic. I deserve to have a child just as much as you do.

You just need to relax
Seriously, lack of relaxation time is not the reason why my body is spitting out my babies one after another. Don’t insult me.

Pretend like it’s just a dream and that everything will be fine when you wake up
Yes it is like a dream. Imagine the most horrific nightmare that you can’t wake up from, that gets scarier and more exhausting and more traumatising as time goes by. Please do not belittle what I going through by comparing it to an experience that isn’t real.

Everything happens for a reason
Even if you do believe this, it does not help. What reason would this be? Why am I being punished? Because I don’t deserve to be a mother? Because I delayed trying to start a family? What master plan is this a part of? Please don’t suggest that fate has had anything to do with this.

What’s wrong with you?
Look I know there is probably a lot wrong with me but your comment implies I want to talk about all the details. Please appreciate that I confided in you about my unfortunate situation but respect my privacy and trust that if I wanted to share it with you I already would have.

Oh she wants to have a baby or something and is jealous about us being pregnant so now she doesn’t want to hang out anymore
If I’ve confided in you that I’m going to have to take a few steps back from our relationship while I come to terms with my grief of having yet another pregnancy loss please don’t go relaying that information to everyone you (and I) know. If you don’t understand why I’ve needed to distance myself from your growing belly then it’s just as likely everyone else you tell that way won’t either. Please respect my privacy. Allow me to tell people when and the way I want to tell them. Understand that it might take me some time to adjust to the concept that you are getting what you want and I am continually denied it. I don’t want to feel this way but right now avoiding you is the only thing I can do to maintain some level of self preservation.

Cheer up
Sure thing, no problem. What’s the bright side? Look we can’t just snap our fingers and make all this hurt and anguish go away. I might not smile for a long time. As a friend you should respect my need to grieve and give me the space and the forum to do that.

I don’t understand why you won’t just have a few drinks, you will feel better
After years of trying to cleanse my body in order to make it more a more pleasant and habitable home for my future child, going out and getting smashed isn’t going to improve my situation. As a friend I would hope that you trust me to make the right decisions for my body.

I told you to follow my advice
I had to throw one in here from the medical community. Pregnancy loss is one of the most stressful experiences for any woman. She does not need to have her hand slapped by you for not following every single ounce of your protocol. Losses occur for many reasons but any woman who desires a child of her own would never willingly cause the death of her baby. She does not deserve to be blamed for losing her child. She is human and can only do as much as she can do.

At least you CAN get pregnant
How many times have I heard this one. Yes, medically speaking this may be a positive sign. However, emotionally there is no comparison to the highs and lows that accompany recurrent pregnancy loss. When there is no reason to explain your losses occuring over and over again. When you nearly retch with joy and fear at the sign of another positive pregnancy test. Will this one be lost as well? How long will this one last? Will I ever get to meet this child?

You are so lucky you don’t have kids
Really? And would you give it all up? I already know that babies can be hard work, that my life will change forever, but shouldn’t the fact that I am trying to achieve this relentlessly over and over again tell you that yes I sign up to all that? You know you are incredibly fortunate, so don’t pretend any different when I’m around. This is not the right thing to say to someone who is unable to have a child.

There’s always IVF
Yes there is and IVF works wonders for a lot of people. But it is not a band-aid solution for everyone. Conception is not the problem in recurrent pregnancy loss. It’s maintaining a pregnancy. Yes, I know the difference.

Well you have a sister
A response when I was told that I should consider egg donation. Egg donation is a wonderful option that helps many people achieve their dreams of having a child. But right now I need you to understand that I want to exhaust my options of having my own child first.

What about adoption?
Adoption is a great solution for many people struggling with infertility and recurrent loss to allow them to have the family they have always dreamed of. And it very well may be an option I consider at some point down the road but right now I need a friend who understands my need for my own biological child, that I’m not ready to give up that hope, and that I want to interrogate the medical system to finding a solution for me to achieve this. Don’t give up on me, I need your support.

Maybe you should have started sooner
Yes maybe we should have. Trust me, I regret delaying trying for a child everyday but you can’t say for sure that 5 or 10 years ago we wouldn’t had to endure the same struggles we are going through now. I don’t need to be made to feel like I am to blame for our heartache.

You have plenty of time left
I wish that were true. We all know it gets more difficult with age. We know there is an increased risk of ovarian failure, of chromosomal abnormalities, of pregnancy loss. Please don’t sugar coat the future.

It will happen next time. Don’t give up. Stay positive
Will it? Should I? Promise? This may sound reassuring when it comes out of your mouth but you probably realise that it might not ever happen. When there is no medical reason for multiple losses it does start to feel like it will never happen, and that is a normal response from someone going through this kind of scenario. We don’t want our feelings to be dismissed, we need you to listen to our fears and our concerns. And if it does all become too much and in the end we decide to give up the fight, we don’t want to be punished for not trying that one last time.

Get on with your life. Don’t dwell on the bad things.
I wish it was that simple. I am not likely to get over this. This pit of emptiness and self-loathing will likely remain with me for the rest of my life, regardless of whether I ever get the opportunity to have a family of my own. Believe me, I see the destruction this hardship has caused to my emotional wellbeing, to my relationships, to my daily motivation, and wish nothing more than to reverse it. But I am a different person now and the loss of my five babies will stay with me for the rest of my life.

&lt