The fairy looping tooth

I had been thinking about writing something on occasion of BLAW (Baby Loss Awareness Week) at the beginning of October, but I fell prey to extreme mood swings, tiredness, and crying spurts of the 2ww. It was pretty bleak and I think I felt bad both at the thought of writing about BLAW and guilty of not writing anything at all. I just couldn’t win.

I had in mind that on this occasion, I was going to reminisce about one of my miscarriages. In particular, one that took place about two years ago on the 11th of November. How befitting that it should fall on Remembrance Day…

I feel really vulnerable talking about it and half of me doesn’t want to do it. But duck it, it’s not every day that I get to talk about my dead babies and failed pregnancies.

Some of the details are a bit blurry but I remember that we had started trying for a baby in August of 2018. It was a rushed decision made more from an innocent teenage giddy fancy than anything rational. I remember I was in Romania, and we had let it slip that month on the contraception, which led us to think ‘shall we try?’ – we got drunk over the phone and confirmed the decision, which later was put into writing in a lovely picture my partner drew of our baby with a dummy on. We planned thoroughly what our future was going to be like and there was a family in it. We didn’t think for a second there could be impediments to our dreams, even though I already had a past of infertility and miscarriage.

Looking back I’d like to give our past selves a reality slap but also I want to go back to being that excited, that in love and that crazy.

We didn’t really try try either. I can’t remember any excruciating 2ww, or changing the way we ate or our lifestyles that much, I am not even sure I was taking any supplements. In fact, the month I found out I was pregnant, I had a few drinks on Halloween and didn’t notice any difference. I was also very ready for it to take a long time, knowing that previously I couldn’t conceive for ages. I think I was very relaxed about it and it didn’t make me as anxious as it does now.

To our disbelief at the beginning of November, I took a pregnancy test and it was positive! I didn’t do anything special to announce it to my partner or thought of a baby straightaway. I felt detached from it as I had miscarried for the first time the previous year. I kept telling my partner that I didn’t know if it was going to be ok but deep inside trusted it would.

I remember my partner explaining to me about the 12 week rule for the first time. He said that you should hold off telling people you are pg (pregnant) until after the 12 week scan…it seemed to be impossible to reach that milestone – I thought. But I trusted him and we decide not to tell anyone at all. (How frustrating it was when I ended up telling people I had miscarried that didn’t even know we were pregnant! )

I was also very anxious about the timing of this pregnancy as I had just learnt I was going to be made redundant from my 9 year job, I felt like I wasn’t going to be able to support and provide for the baby and properly take care of him/her. The hormones exacerbated this feeling and it even crossed my mind that I should have an abortion (something that I know I never would have done). This thought made me feel incredibly guilty afterwards when I had the miscarriage because I really loved this baby. Also, when you have a miscarriage, the woman always thinks it is her fault for every little thing she did/didn’t do or think, how silly.

Just after we found out, we had a reunion with my partner’s family and his son from a previous relationship. This is when I started thinking about the baby and what it would be like for him to meet all his cousins and brother. It started being very exciting! Just in time, my partner bought me some flowers and a little elephant blanket, and I was finally getting used to the idea of being pg. We started calling the baby ‘Pequeño’, which means little in Spanish, and I was sure he was a little boy.

I arranged to go to the doctors to see how I should wean off of the antidepressants and also to see the midwife three weeks later. I didn’t suffer from sickness or any extreme symptoms but I noticed that at night I used to get really bloated and crampy. I pushed through and put these nasty symptoms at the back of my head. On a Thursday of the following week, at 5 weeks 4 days or so, I was teaching a lecture, when I went to the bathroom and noticed there was spotting. A wave of absolute panic and dread came over me. Not once again!? (My previous mc had started exactly that way). I always had a 5 minute break in the lecture so I went upstairs to phone the doctors. He reassured me that spotting is very common in early pregnancy, so nothing to worry about. I knew it wasn’t right. I went and finished teaching that lecture. It was excruciating. I tried to push past experience out of my consciousness, but I couldn’t. The next day I also had a lecture but given the doctor had said that everything was ok, I went home and tried to relax. When I woke up the next day, I was covered in bright red blood so I phoned both work and the doctors notifying that I wasn’t going to be in and that I needed a scan because I was having a miscarriage. My partner suggested going to A&E but I was resigned and this time I knew the drill. I wanted to miscarry at home.

My partner was incredible at taking care of me. He made this miscarriage much more bearable, fed me, gave me hot water bottles and love. The scan on the following Monday was an exact carbon copy of the last one ‘we cant see anything here’, you’ve had a complete miscarriage. It is horrible. You even question your own sanity and if you were even pregnant to start with. But, of course, you were, which is even harder to take.

I didn’t have a lot of understanding from work about what had happened. When I phoned in sick on Friday, I found an email from the head of department reprimanding me for not giving enough notice about my absence. I had phoned early in the morning, but I think she wanted me to know that I was going to have a miscarriage and at what time it was going to be. This audacious bitch had no sassy response from me, but, if I was to go through this again, I know exactly what to do now. I would send her a blank email with the Miscarriage Association leaflet on ‘miscarriage in the workplace’. Hopefully, it would instil some sense of shame in her brutally stone cold heart.

If you go through a miscarriage at work, please know that you have some rights to protect you from discrimination. I hope that you never ever have to go through that though. (Cancelling the midwife appointments is very eerie as well!)

Just like that, on the 11th of November 2018, our Pequeño left us, with a big hole in our hearts. I know he must have been bubbly, talkative and also a little bit naughty. We also know that he likes to fish as witnessed by my partner in a dream where his father was teaching him how to fish. I also dreamt of him on the same night, but, sadly, I can’t remember what he looks like.

We named him Ethan later, as someone suggested to name our babies properly to give them a place in our family. Ethan would be one and half years old now. So strange to think about that! It took me about a year to properly mourn for this baby and he was 5+4 weeks old upon his death. Let nobody tell you that how old the baby is correlates to how long grief lasts, or that you shouldn’t grieve because you were barely pregnant. You grieve for as long as you need to.

I tend to know that my grief is better if I can listen to the baby’s song or write a poem about them. I still find it difficult to listen to Pequeño’s song (it’s ‘Qué Bonito!’ by Aitor y María) but, after about a year, I had a few muse beers and wrote this poem for him and the corresponding translation into Spanish. I hope you enjoy it. May he rest in peace and take care of his little brothers and sisters.

When you were born in heaven

You could already fish before you could talk.
I changed your nappies by changing
The way I thought of love.
You didn’t cry, you didn’t move
But the wind came shouting your strong truth.
You could run before you walked,
You could swallow the rules whole.
There was no heaven for you
Because your were born in the cosy caring Loop
of the fairy looping tooth.
You will never know of deep despair
Of cushions gone wrong
Or your parents affairs.
I still live in your realm my child,
And for your sake learn to be fair
Learn to love, learn to die
Learn to appreciate a black blue sky
And hope that one day I will see you fly
Up and high in the sky
Without the burden of my daily life
Without the dread to die.

Cuando naciste en el cielo

Sabías pescar antes que hablar,
Te cambié los pañales cambiando
Lo que pensaba que era amar.
No lloraste ni te moviste,
Pero el viento gritó a voces tu verdad.
Sabías correr antes que andar
Te podías saltar todas las pautas.
Para tí no existía el cielo,
Porque ya naciste en el diente cálido y tierno
donde el ratoncito Pérez guardó su pañuelo.
Nunca conocerás la desolación,
Ni los cojines equivocados
Ni si tus padres tienen problemas o no.
Yo aún vivo en tu reino, mi niño.
Y por tí aprenderé a ser bueno;
Aprender a amar y aprender a morir
Aprender a apreciar un cielo azul gris
Espero un día verte volar muy alto en el firmamento.
Y poderte acompañar cuando yo también
sepa volar antes que hablar.
Sin arrastrar el día a día,
Y sin el miedo a lo que dejo atrás.

Things I do or don’t do while trying to conceive (ttc) part 1

I have taken a long break from writing in this blog after I started the fertility treatment with doctor S last month. My mindset has changed. We are two years and 2 months into our trying to conceive journey and every stage of this process has been uniquely different to the last.

About 6 months ago I was surrounding myself with all things IVF, infertility, fertility drugs and diets, etc. I was cautiously optimistic and quiet about it as if my optimism might fade if I broke the silence. Then, about 4 months ago I was pregnant, I phoned my counsellor in despair telling him I dared not stop thinking about making a baby, cos if I did, the baby would die. It was terrifying. As if I could keep my baby alive by sheer willpower! I told close family immediately so that we might have support in case we miscarried again, but I found myself petrified at the questions asked, unable to speak about the baby. It’s like I turned to stone.

Inevitably after this ended in miscarriage, there was this fuck off attitude to the world, to my body, to everything else. Nothing mattered any more. The only thing that mattered is that I didn’t want to live in silence and without answers any more. So I started this blog as a way to understand and process my own feelings. I surrounded myself by all things miscarriage, miscarriage forums, medical journals about reproductive immunology, fertility clinics that treated implantation failure, Tommy’s research centre, etc.

After our diagnosis of high NK cells, we have been given the green light to try again, my whole mindset and my feelings have changed. I no longer want to think about miscarriage, I don’t want to talk about it. Like before, I am cautiously optimistic. I am surrounded by fertility facts, myths, superstitions, beliefs and mindfulness. (At the same time, deep inside still grieving my losses, still processing this grief, but renewed in strength, familiar with it.) I feel like I am being rocked to sleep in a giant leaf upstream by some lonely and wise frog. It is a nice feeling and I hope it lasts. Sadly, this mindset is lacking in inspiration to write because the rage and the anger are gone. One of my main drives for writing. (Everyone that truly knows me, knows that one of my favourite things to do in the world is rant)

Anyway, let’s cut to the chase. As you can imagine 2 years and 2 months yield a lot of cycles of trying to conceive, so I have accumulated a wealth of knowledge around this area that I wish to share in case it is useful for someone. Some things have worked and others haven’t but truly, in the end, nobody knows what it is that worked. There is so much mystery about what works in trying to conceive that I have decided that science is useless and sometimes we just have to go to the land of the fairies or to the land of God, or Buddha, or the ‘universe’. But before we go to those lands, let me clarify that eliminating barriers to conception and implantation scientifically is the best way forward and will give you the best chances. (We are currently going thought fertility treatment to eliminate NK cells, please see the entry on this blog ‘Body, leave my embryos alone’).

In this light, I am going to start a series of posts talking about how I approach trying to conceive in a holistic kind of way. I hope you enjoy it.

Diet

First staple of a good ttc regime is diet. (This is food and drink except alcoholic drinks which merit a separate entry). Most fertility diets are high in protein and low in carbohydrates, full of colourful veggies, oily fish, nuts, seeds and fruits. This is because regulating insulin levels in the body is thought to benefit egg quality. Now, within these wide parameters, there is a lot of room for improvisation, cheating, being strict about it and being a complete Nazi. I sit between those last two. I eliminate gluten, dairy and nightshades from my diet, and at times some grains too. The reason for this is that holistic doctors say that gluten and dairy promote inflammation in the body, which could mess up with implantation. In any case, if you suffer from IBS or digestive issues, eliminating dairy and gluten is a good idea, even if its just to see if it makes a difference.

On the other hand, if you have autoimmune infertility (high NK cells, ANA positive, etc) an autoimmune diet might calm your body down. However, it is a very restrictive diet, very difficult to do for long periods of time. It eliminates nightshades (tomatoes, potatoes, peppers, spices! 🤨 ), gluten, dairy, grains, even gluten free ones, all legumes, caffeine and alcohol. Also called the Aip protocol, it is a stricter version of the paleo diet. Think lots of protein and veggies. I have managed to do some of it but not completely, as I have struggled to eliminate spices from my diet…I am Spanish!!! This is where I draw the line! I am also not expecting to stay over in people’s houses and making them comply with all these dietary requirements!

Doing a mild autoimmune diet for the most part has made me feel full of energy and has eliminated some of my autoimmune symptoms like brain fog and joint pain. However, I tried Veganuary this year so I ate a lot of legumes and gluten free grains and I also felt really fit on this diet! My top favourite diets have to be plant based, flexitarian and mild autoimmune because they all made me feel more energetic, less lethargic in the morning, my digestion was better (except for farting in the vegan diet) and my skin was clearer too.

My most proudest achievements have been to enjoy avocadoes, sweet potatoes, peas, beetroot and spinach. I call these evil foods. What one does for love…

All that being said, I have decided to not feel guilty any more about having treats. Next 2ww I am cooking blueberry clafoutis and that’s that. I’ll also eat my pineapple though, as it is thought to aid in implantation! (gotta love fertility myths).

In terms of caffeine, I have mostly eliminated it. In fact I haven’t consumed coffee regularly for over a year. I drink raspberry leaf tea on the first half of the cycle and turmeric and ginger tea on the second half. Very occasionally I drink decaff coffee or Pepsi and I eat some dark chocolate daily, which is a powerful antioxidant and delicious too.

Stopping smoking

Tricky tricky subject this. Especially, if you mix the cocktail of smoking, trying to conceive and pregnancy. It invokes so many feelings, doesn’t it? If you feel like you are starting to develop a judgemental feeling of the kind ‘everyone knows smoking is bad for you and you shouldn’t do it, least of all while ttc or pregnant” or ‘duh, everybody knows this’, I invite you to stop reading and head elsewhere. I don’t have time for judgemental cunts. Perhaps, you’ll enjoy forums in which women are slated and verbally stoned to death for smoking while pregnant. Perhaps you can hang out there.

This is a safe space, where we can talk about how we feel about smoking and how it affect fertility (or not), ttc and pregnancy.

Scientifically, we have known for some time that smoking is detrimental to your health; from damaging hearts and arteries to lungs, stomach, etc. Less is known about the effects that smoking cause in (in)fertility, but as we can suspect, it is not pretty.

Smoking has been linked to damaging sperm and egg DNA, longer time to conception and reduced blood supply to the uterus. It sounds very scary and it is.

Now, these are the scientific facts surrounding it. Let’s now go to feelings, tell tales and so on. Let’s use me as an example of this. I started smoking when I was 23 (I know, silly right?). Then continued smoking happily oblivious to its effects throughout the majority of my twenties. I stopped on a few occasions, because I was a runner and I wanted to up my game. Fast forward a few years and I was ready to try to conceive; I consciously reduced my smoking, especially, in the 2ww. However, I had heard tales of people who had no problem with their fertilities, pregnancies, children, etc. even when they minimally smoked and some had smoked for years.

In my experience, the guilt and the pressure from other people to quit smoking while trying to conceive or pregnant made it significantly more difficult to actually stop doing it. I chastised myself for smoking those first two weeks of my first pregnancy, which ended in miscarriage, the guilt itself was enough to keep me smoking for even longer post miscarriage. I had to stop this cycle of guilt and addiction. So I read Allen Carr. A miracle worker who guides you through the darkness that we find in the smoker’s mind. In his book, he tells us that the smoker doesn’t smoke because he ignores the dangers and the health risks, but he smokes because he thinks the cigarette provides her with confidence, courage, a sense of identity, stress relief, etc. In my case, I can see my smoking as a sign of my emancipation, freedom and independence, a woman who left her home country alone to make a living in a foreign country, strong, powerful. Allen tells us that we have been brainwashed and tobacco doesn’t provide us with any of those things, but only takes away.

All this brainwashing is very powerful and, together with nicotine addiction, make you hooked for life. The guilt and health warnings makes a smoker smoke more rather than less. He even explains that pregnant women are coaxed into giving up to benefit their babies’ health only to start again just after they’ve given birth. The crazy rollercoaster of trying to conceive is going to generate a lot of stress, and a smoker always reaches for a cigarette to alleviate it, and if you stop, you can’t. This feeling of deprivation is going to make you smoke more next time you do, probably next time there is a negative pregnancy test or your period arrives. Been there, done that. Month after month of negative tests can suck the life out of your soul. Smoking doesn’t make it any better, but the smoker’s brain think it does. Such is the beauty of the addiction.

However, it is possible to escape from it, like Allen Carr explains, it is in fact very easy. In my case, I was fed up, I didn’t want to simply cut down or stop smoking in the 2ww. I didn’t ever want to have the feeling that I caused a miscarriage. (Even though I didn’t; you’d have to smoke a chimney to cause one), I didn’t ever want to have that guilt. Ever ever again. So I quit cold turkey following Allan Carr’s method. I still miscarried but I now knew that I didn’t cause it. Never be guilt tripped into thinking you caused a miscarriage or infertility. It is not true. We can’t change our past but we can change the present and live la laifa with a better quality of life. I can only hope and pray that I don’t start smoking again out of desperation and disappointment caused by miscarriage or infertility. I am now a happy non-smoker, and healthier by the day.

Please, stay tuned for future installments of things I have done or not done to try to conceive.

Body; leave my embryos alone

I have taken my time processing the events from the past week before sitting down and writing. I am very pleased to tell everyone the good news I received in my follow up appointment last week. At least good news, if you look at it from the perspective of a rpl (recurrent pregnancy loss) warrior.

On Thursday last week, we were diagnosed with high NK cells (natural killer cells) and very high activation power of these ones. What does that mean? NK cells are an army of warriors that protect us against infection; bateria, virus and cancer cells. In pregnancy, they have some kind of agreement with the uterus that they won’t cause a problem, even though the embryo is made up of half foreign genetic material. This agreement means that, in a normal pregnancy, the NK cells will protect the embryos rather than attack them. This is highly clever of the body. Very ingenious. However, in my body, this agreement didn’t happen. NK cells not only recognised the embryo as altered self and foreign but they also called up the bullies; the most aggressive cells to destroy the poor little soul. I have also read from doctor Beer (Is your body baby friendly?) that these bullies get progressively better at destroying the enemy (embryo in this case) the more times they are exposed to it. this means the more miscarriages someone has, the more likely killer cells are going to kill and dispose of it in record time. Hence why I was not only suffering from miscarriages, but also infertility. The embryo will be dead even before you know you are pregnant. In my case, these deaths were accompanied by severe pelvic pain and chronic inflammation making the uterus one of the most hostile places ever. How can I be relieved that this is happening to me?

a) This was already happening and I was to a degree conscious that that was the problem. However, I had unexplained pelvic pain, unexplained infertility, unexplained joint pains, unexplained miscarriages, unexplained rashes, unexplained many things. When you are faced with a lack of diagnosis and recognition of your pain, you start to think you must be a hypochondriac or, worse still, an attention seeker or mentally insane. It not only took time to get here, but tremendous amount of research, strength and courage that I wasn’t insane. I have been accused and been “put in my place” many times by doctors, friends, family and even my partner. They told me that I couldn’t know what was happening to me, they told me it was bad luck, they told me it’ll happen in the end, they told me I was too young to have joint pains, they told me it was unlikely that I was going to find a cause for my pelvic pain, they told me that I couldn’t know I was pregnant before taking a pregnancy test, they told me that having this amount of pain in pregnancy was normal, they told me that I wasn’t a doctor. And today is the day that I can say fuck it to all of those sentences. (Not to the people, because I know that sometimes things are said in good intention). Today is the day I reap the benefits from all my research and hard work learning science that I felt incapable of learning. The day that I was right for once, even if it is to my detriment and the detriment and pain of all those lives lost.
Their lives are not lost, because I have fought for them and I will always fight. Every tiny one of those babies I’ve lost I love with all my heart and soul until the day I die. One day I hope that I will be able to see them all! Oof, I got emotional there.
But, yes, that is the point. By the way, waste no time in trying to look at NK cells on the NHS websites. They do not “agree” with them unless you look at Tommy’s clinic or Dr Quenby’s Institute in Coventry. The latter even said herself that the NHS wouldn’t fund clinical trials for a drug she already knew prevented miscarriage. However, without clinical trials it is not scientific, they won’t approve of said drug, it won’t be recommended and people will continue to miscarry. As you can see, I am fuming about this.
Please, feel free to ask any questions regarding the scientific/unscientific nature of these theories, but as of now, I’d rather leave the NHS alone. (If you are suffering from rpl, Do NOT listen to the NHS. They will tell you it is bad luck. They will also tell you that you can’t improve your egg quality by doing anything, and that is clearly BS. You just have to read It starts with the egg to find out).

For perspective here is a timeline of what I, and then we, had to go through before we got to this point:

Year 2011 infertility of unknown origin diagnosed.

April 2017 spontaneous pregnancy.

02/06/2017 first complete miscarriage at 6 weeks and 4 days

20/11/2018 second complete miscarriage at 5 weeks and 3days

08/04/2019 Referral to the Gynaecologist.

30/05/2019 Chemical pregnancy. (unrecognised by doctors)

15/05/2019 Dr Scott Tests ANA positive suspicion of autoimmune disease

14/06/2019 Semen test analysis

18/06/2019 First visit to the Gynaecologist for pelvic pain

03/07/2019 First GP fertility investigations

06/08/2019 Referral to fertility clinic.

18/09/2019 First appointment with fertility clinic.

30/10/2019 referral to IVF by fertility clinic for April 2020 for unexplained infertility.

22/10/2019 Laparoscopy shows scarring but no endometriosis. Referral to the pain management clinic.

November 2019 Ureaplasma infection diagnosed by Serum, Greece.

January 2020 Doxycycline for 25 days. (the worst meds I’ve ever been on)

March and April 2020 Covid 19 and IVF cancelled.

05/05/2020 Pain management write back to the GP to tell them to make an effort to further diagnose the cause of pain.

19/05/2020 third miscarriage at 6 weeks and 2 days.

June 2020 Funding withdrawn from IVF.

10/06/2020 Referral to Rheumatology

08/07/2020 Referral to RMC (recurrent miscarriage clinic)

23/07/2020 Second Greek test. Infection cleared.

10/08/2020 First appointment with private clinic in London RM tests and NK cells tests. Thin lining identified. (To take progynova aka oestrogen)

03/09/2020 Follow up appointment in London. Diagnosed with high NK cells. Lining responded well to treatment.

10/09/2020 NHS RMC telephone appointment. (can’t wait)

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b) Luckily, there is a treatment for these rascal NK cells. Although expensive, we think we want to give it a proper go, as it feels it’s our best chance so far. The NK cell treatment I am going to follow consists of:
Hydroxychloroquine every day. (It is an antimalarial drug, however, it is used to treat lupus and rheumatoid arthritis as it is thought to modulate the immune system). I have been on them for 4 days now and I can happily say that my pelvic pain has disappeared and my joint pain is much much better. I took a walk just to see what I could do without feeling pain and it was a wonderful feeling, close to the time when I first got my contact lenses and I realised wow, people see all this detail! I felt like I was born again, like a child who has been at home for very long and suddenly can go jump on the puddles. (great info to tell the rheumatologist, as I suspect I might have either arthritis, lupus or some kind of beauty like that).
The other part of the treatment is to go to London every month around ovulation time to have an intralipid infusion. The intralipids bind to the NK cells making them chill the fuck out. If I was to become pregnant, I would have to go for scans and intralipids on week 4, 6, 8, 12 and 16. All in all, I am very happy with my kitchen sink. This is it:

Progynova (oestrogen) days 5-24 in the cycle
Cyclogest (progesterone) days from ovulation to day 27 of cycle
Hydroxychloroquine 400 mg daily
Aspirine 75 mg daily
Intralipids ovulation and pregnancy

For egg quality I take (from suggestions in It starts with the egg. All approved):

Omega 3
N-acetyl-cysteine
R-alpha-lipoic acid
Probiotics
Vitamin D3
B vitamin complex
Ubiquinol coQ10
Vitamin C
Magnesium and calcium
Methylfolate
Zinc and selenium
Royal Jelly

Wow, so much! Anyway, there are difficult and challenging times ahead but I have decided to take it day by day. Today I have eaten my broccoli and I’ve had my beetroot smoothie, an achievement in and of itself. I have gone for a walk, chatted to a friend and looked at the ocean. It’s a new life and a new day AAAND I am feeeling goooooooooood.

The famous doctor and the dread

This is going to be a bit dreary. I am reaching breaking point and I have a huge personality crisis stemming from, perhaps, the fact that I’m taking three times the amount of oestrogen that a menopausal woman would. (I am not menopausal yet… just thickening my lining…)

About ten days ago we went to see a specialist in recurrent miscarriage in London. He makes the papers with headlines “Women has baby after 18 miscarriages” and the like. He is a reproductive immunologist. A specialist that looks at the role of the immune system in RPL (Recurrent Pregnancy Loss). He investigates NK cells (Natural Killer cells) that aggressively attack the embryo whilst trying to implant in the uterus or right after. A huge amount of women undergo treatment with him after being told everywhere else that they didn’t have a problem and just to try again. These women write their experiences in a forum online that’s been going on for longer than 10 years. For months I have perused these forums; I have read success stories of women who followed his treatment and I have held my breath when women experienced further miscarriage under his treatment. I have also read that, if the tests he does show a NK cell problem, then you have an 80% chance of a successful pregnancy. So what’s not to like? What’s the catch?

Money. This is really expensive. I mean really. I feel guilty just for being self indulgent enough to want to have these tests done. And the tests are just the beginning of it. Then, if he identifies a problem with NKs, he will insist on treating you with several medications, giving you biweekly scans and intralipid infusions (A conconction that is supposed to bind to the NK cells to keep them from attacking the pregnancy). The intralipids alone cost 300 each.

I am desperate to be pregnant again after my last miscarriage, it’s instinct. But at what cost? I feel so much pressure. On the one hand, if I don’t conceive, at least I can save some money in order to pay for the treatment (If I found a real job). On the other hand, every month that passes is one month wasted and gone whilst my eggs are dying. My entire value as a woman dependent on my capacity to have children. It is worth money. The root of all fucking evil. I think this is what it must feel like to sell your soul to the devil. A dizzy feeling as if you were about to enter a huge vortex with no end to it. At least not a visible end. I have pressing questions that no one can answer. “Where do you draw the line?”

Stories of women having 10, 15 and 20 miscarriages blow my mind. How can they keep going? How can they amass the fortune that they need to keep going with these treatments? Everybody talks about the women who got their longed for rainbow babies. But what about the women that didn’t? In what physical and mental state were they? Why did they decide to stop? Was it money? Was it health? Their relationship breaking down?

My state of mind right now is so grotesque that it reminds me of one of Goya’s paintings of ‘Saturn devouring his son’. I’m trying to make sense of it. Maybe it’s the waiting time for the results. Maybe it is that, suddenly, everything became real and now I can see a light at the end of the tunnel and it’s scary. Weirdly, one of the things that happen with infertility is that you lose sight of the end goal and you stop wishing and hoping that a baby in your arms could/would happen. It is like a blurry dream. One I’m not ready for. Not yet. Maybe I’m absolutely terrified of pregnancy knowing that I will never have the naive, blissful experience other people have. Maybe I’m humiliated by the fact that my body needs huge amounts of money to conceive and carry to term. Maybe I just feel useless and worthless because I’m taking hormones. Or maybe I am miserable because my little sister went back home.

Either way, I feel dread at the results, at my lining not thickening enough to have an embryo implant in it, at my ovarian reserve results and at how expensive it could be if we went for it.

On this note, I’m going to show you a song I wrote that encapsulates how I feel and have felt numerous times since the beginning of this experience. The music for this song was written by our band ‘The Menagerie’. Once it was hammered in my head numerous times, I managed to write singing and lyrics for it. So here it is. I can sing it a capella if anyone wants to hear it in person sometime. Not sure about recording a capella though. It’s more intimidating.

Dread

Shackled to my bed
Bound by a demon
who lives within myself
Dreams hanging on a thread

Why did I wake
If I keep sleeping longer
there’ll be no choice to make
Or gestures misread/after the demon fled

A spark that possessed me
I feel dark and dead
The dream catcher drips blood above my head.

But I am dead in the seeds
I am dead inside
I feel dread
Dread, dread.

Chained to my head
If I keep sleeping longer
They’ll be no thoughts to face
Or feelings to shred

My eyes are open wide
But when I keep them closed
The pain is not around
Stop it, let me fly

Anger keeps me burning bright
Like the fire of thine eyes
And makes my skin shed

But I am dead in the seeds
I am dead inside
I feel dread
Dread, dread.

Saturn devouring his son

In Praise of Shameless Masturbation

Today we have a guest blog post by Psychologist and Educator Tamora Sita Dhanipersad. In her essay, she elaborates on the topic of female masturbation and expands on the issues presented in the article “The Ballad of the Lonely Masturbator”, she dissects every detail and addresses key issues such as rape and body image, traumas that, as women, we suffer continuously but we don’t talk about it. Like miscarriage, body image, rape and female masturbation are taboos. I must confess I cried inconsolably when I read it. Feeling insecure for actually posting this. What are people going to think about me? What am I going to have to talk about after I post this? Her bravery is unparalleled and I can but only take my hat off to her for this post. Here it goes.

This essay is a response to My Space Baby’s article “The Ballad of the Lonely Masturbator”, written by the ever-beautiful Rene.

Like women who have miscarried, women who have been sexually abused and raped feel a similar loss of trust in their bodies. A perceived loss of identity, womanhood and indeed humanity are frequent partners to both events. In either event our relationship with our bodies is deeply wounded.And in both events masturbation can take on one of two roles.
a) it can be another source of guilt and shame or
b) it can, as our lovely Irene argues, become “a form of fire that stifles self-doubt and empowers us to rise above” the perceptions of us as victims, women to be pitied, or somehow broken women.

I will go further in this essay to suggest that masturbation can be a deep form of healing for those with traumatised body images and images of the self. I will also argue that we are kept from using masturbation as an act of empowerment and healing by the structural oppression of women by institutions and western culture.

How Rape and Sexual Abuse violate Womanhood

Womanhood – the collective state or condition of being a woman. Contains the qualities considered to be “natural” or an inherent characteristic of being a woman. In the case of miscarriage it is easy to see how the event breaks this concept. Women are supposed to bear children as easily as the arrival of spring. In rape and sexual abuse, however, it is harder to see how womanhood is violated.

Firstly, the majority of rapes and abuses are ambiguous to the victim. To the observer the violation is clear. But to the abused? The abuser generally goes out of their way to gaslight the victim or otherwise minimise their actions…Many even turn them into acts of perverse love and connection.

And it works.

Secondly, there is the deepest of taboos. For some victims of abuse and rape, they experience arousal. Some may even experience something they mistake for love. Others may actually experience love and arousal.

Media portrayals of rape and sexual abuse make them look so traumatic its hard to imagine how you could be confused. But life is not so black and white….And usually your rapist or abuser is not a stranger, but someone known to you, someone you already have feelings about, many times it’s a friend or acquaintance, or family.

Lastly, there is the biological aspect of it. As much as rape is about power and control at the interpersonal and individual levels…At the species level… Rape is just a valid reproductive strategy. One we have lived with for all of evolution… one we have a reflexive response to…A response that no one tells you about.

Because society does not like it, they want you to fight back. If you don’t, its acceptance…Masculine toxicity transferred to our culture by male dominated systems. Handed to us in defiance of evolution. If you like it, we were right.

Like” does not come into it. Sexual arousal is reflex. Experiencing violence or violation is tied into reflexes. Fight or Flight….And if you can’t fly, there is Freeze. I am one of nature’s freezers. When raped my body immobilises and I become aroused…And then my mind disconnects. I have no choice, its protective instinct.

And now you see the loss of trust in the connection to your body. Worse, it can persist as a trigger for arousal years later. “What is wrong with me?”, You ask yourself again and again…as years later you turn off a TV showing child abuse or rape, because, as violently sick and triggered as you are…you are also wet.

It becomes a source of such deep shame; “You’re sick. You’re a paedophile, they were right, you want to be abused… that is why you like BDSM, that is why you are a pervert.”

Yes, rape taught me I can be aroused, and even in love with my abuser…And I deeply, deeply distrusted my mind and body because of it. And because no one ever talked about it, Doctors, Psychologists and Counsellors, nor the Police…No one. I thought it was me. I hated myself. I hated my body. I was aroused, I orgasmed…but, at no point, did I want any of it. Either when it first happened…or the times I relieved it.

Not to mention additional complications of maybe being neurodiverse, or being an alternative sexuality and having less than mainstream tastes in sex. Then you add the likes of PTSD, Depression and Anxiety that follow this. Your life becomes a snowball of negative factors spiralling far beyond your perceived control and in many cases, your actual control.

Over time you can become so confused between the memory lapses, fraught emotions, the perceived “betrayals” of your mind and body to even respond to something like that, that you can find yourself completely alienated from your body… locked in your mind reliving your trauma. A condition that most things in society perpetuate through the silence that surrounds these topics.

Womanhood contains deep rooted ideas and beliefs of the nature of what it is to be female. Love, Sex, Children. These things are supposed to be natural to you, when you are traumatised, nothing is natural to you. There is no freedom in expression, there is only fear.

Masturbation as healing and the start of empowerment…

It started in St Thomas’s Hospital. I was with my consultant, a woman I deeply respect and who, if she abused her power, I would do anything for. Why? Because she diagnosed my vulvodynia.

She, along with the GP that referred me to her, in all the medical profession did not think I was a hypochondriac. They did not blame the abuse and rape for my “mental experience of pain.”

To be believed. Validated. I adored her.

She was a stuffy older woman, frumpy and a bit Germanic in her speech. Clipped, official. But her empathy was tangible. “Your experiences, are sadly, all too common.”

I had vaginismus as well. This is where you experience involuntary tightening of the pelvic floor and vagina, which makes sex very painful and difficult. It was she who worked out that I’d had vulvodynia since my teens. But I had only thought the pain unusual in my 20’s when the rape, the vaginismus and a change in pill, which brought on heavier periods made it unbearable.

For the vaginismus I started physical therapy with dilators. Or, what I recognised as a set of differently sized dildos. Starting from one as small as my little finger…going up to well, if a man whipped that out of his pants, I would be impressed…and fucking scared.

I did the “Exercises”. They were very simple. I found a needed a warm bath and some massage before, to make it comfortable. Then you lie down. Prop your legs apart comfortably and using a gentle pressure (and a bucket of lube) work the dilator in till you feel discomfort or tension, then stop. You use breathing and Kegel exercises to help work it in more and more. Then you work it slowly in and out of you, or in circles to gently stretch your vagina open. When it becomes easy, you use a bigger dilator.

At first, there was nothing enjoyable about this process. It was boring and uncomfortable. I watched box sets whilst I did it. But as it worked, and the pain lessened, one night the episode was randomly sexy…my brain, bored, started to wonder and before I knew it, I had come, hard. I was amazed. Firstly this was a very new fantasy – nothing like the others. I was not panicking, just happy! It became difficult to deny it was just prescribed masturbation…and, well, it was more fun to treat it as such.

I would never have brought this up to a Doctor… but I did to my consultant… because I trusted her; “I um, the size I am on now… well its ah, fun? I mean, its not that much different to… you know… sometimes has the same effect…” I giggled shyly.

And she did the most wonderful thing. She giggled like a school girl with me; “Nobody said the medicine *had* to taste bad!” she smiled at me. “Maybe go with it, only move up… not when it stops being painful and uncomfortable…but move up when it starts being enjoyable!”

And like that, this woman did more than cure my vaginismus. She started a long overdue series of acts of reparation between my mind, my emotions and my body. I gently moved myself from the physical and mental pain, working one step up at a time. Mentally exploring my fantasies…and tying them to pleasurable healing events.

I started to forgive myself for some of the darker fantasies that had nothing to do with abuse or rape. I also started to recognise automatic arousal and realise it had nothing to do with what I liked or wanted. As a bonus, I got a very lively imagination in that area… Well, if you feed and exercise a part of your brain, it will grow.

I am not the only woman to find masturbation accidentally healing. Go to a forum for miscarriage, vulvodynia, sexual abuse. There are a lot of us.

The only thing that I find in common when reading these accounts is that these were all women who were forced to:

1) Take a lot more time and make a lot more preparations for masturbating or sexual activity than most

2) Read a LOT more about female sexual arousal and generally do a lot more self-education around anatomy and physical function

3) Actually, take the time to explore their own sexual fantasies and ask the question… “Where does that really come from?” “Where does it belong in the story of me?”

4) Were supported by a partner, friend or significant physician/therapist to do so… But, when we do it, we are alone, there is no one else to consider.

These are the conditions under which masturbation becomes more than self-relief or recreation. More than a guilty pleasure.

If you look at these points it boils down again to two things:

a) Permission to take masturbation that seriously, as seriously as you take your sex life with a partner; especially in terms of time and self-education. Permission also to not feel guilty about doing so.

b) A growth mindset, not running from the trauma and hiding, but facing it with the will to turn it to something good…

For my part, being forced to lie there and take time over pleasuring myself, take the time to make up new fantasies rather than letting my brain lapse into old habits…To explore myself physically, mentally and emotionally…

…it saved me from a fate worse than hating sex. From never being able to physically connect to another human being again. From endless constricting shame.

Masturbation returned me to my pre-teen/teenage self…The one who found out she fucking loved sex and her body and the pleasure it gave her. Who adored fantasising and was not ashamed of her fantasies… and in that, it was deeply empowering. I was not a victim of abuse and rape. I was a woman in command of her own arousal. I was a woman who knew her mind and body.

But I cannot help knowing that this was an accident. The NHS does not value masturbation as an act of healing. Because our society does not. Even though we can see here it is an act that ties emotion, the body and the mind together in a way that is powerful to our sense of identity and belonging in society.

Masturbation as defiant womanhood in the face of capitalist individualism…

In her article Rene raises a tension that I believe we as women we go “Oh yeah that…” but we never explore and address in ourselves. It’s a feminist issue for debate, not a personal growth challenge. She places it in the well-known dichotomy:

The independent (barren?) woman who enjoys sex and demands her sexual needs are met vs. the woman who procreates via sex.

I would elaborate her dichotomy further:

The liberated independent sexual woman whose love is conditional vs. the dependant Mother who sublimates her sexuality into unconditional love.

The sexually threatening childless woman vs. the unthreatening Mother, devoid of sexuality.

The single individual in a society vs the corporate identity of a womanhood.

Rene identifies in her article then, something I had been struggling with and yet never given voice to.

Firstly, that having children had caused massive issues in my sexual identity that I had been ignoring. Because she is right. The independent sexually empowered woman is childless. If she has children, she is negligent, wild, out of control… damaging to her young. Selfish.

Secondly, that this is tied to more than just my sexual identity. But it affects my career decisions and strikes at the heart of my identity. Like Rene, I am facing the choice to finish my MSc and do my PhD… like her child issues, it mean I cannot be as mobile as an academic career demands.

It is also a major barrier to any question to live authentically as me…and, in that, it’s a major barrier to mental health.

Like her, I am a loud feminist, I want to be the independent woman. I want to defiantly clutch my batch of sex toys and take my sexual conquests with the same kind of pride men do. To take my sexual prowess with the same kind of pride as men do. To make my career decisions as men do.

But to do so would be seen as vulgar. Independent women go shopping for vibrators in bright groups of friends or with their sexy new FWB. Mothers order them quietly off the internet and wait till their husband is drunk and the kids are asleep to steal a moment to quietly pleasure themselves.

And every woman reading this goes, “Oh that.”

We all know it. You only have to look at advertising to see it. Pick up a copy of Cosmopolitan vs. Prima or Parenting Today. You only have to think about how hard it is to talk to a doctor about masturbation. How as childish British culture is about ‘having a wank’ or ‘sad lonely wankers’.

Do any of us need another explanation of how capitalism via media, advertising, its control over our lives via work is pulling us apart at our very core levels?

They sell us identities… like an individual possesses ONLY ONE… and that identity forms under perfect conditions of loving care, safety and nourishment. Very few humans experience that. They leave us to deal with the complex reality of a human with an identity they pieced together in an environment that was fraught with dangers and stressors. And identity negotiated with an imperfect and distracted mind.

Does anyone want another discussion of how polarising western society has become? Individual vs. Mother, you can’t be both. Leave or Remain. Pro Life vs. Pro Not being a fucking unreasonable dickhead and knowing that the world is more fucking complicated than that!

We know it. But we don’t acknowledge it as a personal growth issue…That it is something we need to challenge in places we dare not look too long. Like you know, why you like MILF porn so much. Or why you like it when you call him Daddy. Or why I never love my partner more than when I backhand him to the floor and take a flogger to his cock.

We are the ones who obey the social taboos of silence that make our own and others experience what it is. Our shame. Our guilt. Another’s nightmare of a life.

So, let me stand with Rene and say: when are we going to start doing something about this? Not just talking or acknowledging it. How much more do we have to see… environmental collapse? The mass murder of every black man in the USA? Every woman broken and traumatised by the mere misfortune to be born a woman who could not magic up a baby as easily as she sneezes?

We must learn to make the uncomfortable comfortable. The first place we do that is in ourselves.

Fuck Yourself and Fuck the White Capitalist Male Hegemony whilst you are at it.

So, let me commend to you the kind of masturbation and fantasising that will empower you…and that will realistically if everyone does it change something.

1. Take your masturbation seriously… and do some homework.Here are your primary resources: omgyes.com, Dr Jennifer Gunter’s The Vagina Bible & copies of Nancy Friday’s Women on Top and Justin Lehmiller’s ‘Tell Me What you Want’. Learn about your anatomy! (Sorry men, I don’t know male equivalent sources, bar Nancy Friday’s Men in Love & Lehmiller covers everyone).

2. Put as much effort into fucking yourself as you would a partner. Honestly, take out a whole evening. I do, think nothing of pleasuring yourself 3-4 times in one session. Why not? You’d spend all night doing that with a lover would you not? Dress up, please yourself with food and music, bath… whatever you’d do to a partner.

3. Explore your fantasies, push your own boundaries a little. You think you hate X, but is that just an unpleasant life experience that bars you. Is it inherited disgust from society? Have you just not really thought about it before? Or, is that just an authentic piece of who you are?

4. Make your friends your normal, not the mainstream media’s ideas of normal. Talk to close others, get over the embarrassment…find or make positive spaces, occupy them, talk about masturbation not only as recreation and release but as self-expression and healing. We should be able to chat to our partners about this easily and to others who are close and you trust.

5. Fuck shame. Well how do you do that? Realise that when you start talking about your self love life at all people are going to act like children or get very embarrassed… because that is the best society can do.

The majority of society has the self-awareness of a flea. Or more to the point a 14-year-old boy. Would you let a 14-year-old boy shame you about anything? No. why? Because he needs to grow up to see what he is doing wrong.

So does Western Culture about masturbation. It needs to stop seeing it as a product to sell as vibrators or porn. It needs to stop being so prudish that you cannot talk about your fantasies or desires to even your bedroom partner without massive anxiety… and it needs to get the fuck away from telling us how to inhabit the space that is our own bodies and minds.

What both need are understanding. Support others to open up. Practice being at ease. It won’t come easily at first, its all going to be super-awkward… but you will normalise it eventually!

Reclaim the curiosity we save for media! Everyone is interested in sex, fantasies and masturbation… we are adults, we want to know what is ‘normal’. Stop asking the media! Start asking people -shock horror- who you actually like and love!

In all these ways we oppose shame.

We are our culture. We can obey it or change it. The easiest way to change it is to change yourself. You be the person that normalises it, all you have to do is talk about your experiences of and think about how they are shaping you and those around you.

Normalise being a messy complex human.

So that when people get messed up, they don’t feel alone, victimised, blamed and judged…and even better they are not alone, victimised, blamed nor judged.

Nor are they doing it to themselves with just the hoarse whispers of society in their ear.

As a bonus, and if you believe none of what I say, at the very least you can agree that a joyous, exploratory, defiant, and accepting approach to your solo love life will make you an excellent partner in bed one day. Its also the easiest way to become multi-orgasmic. Men that means you too; go learn to edge properly and exactly where you have to tense/push to retro-ejaculate and your gold, promise 😊

The Ballad of the Lonely Masturbator

Controversially, I am going to write today about female masturbation. The reason for this is that I see and hear women in recurrent miscarriage forums (RM forums) suffering and toiling with themselves about their sexual relationship with their partners, the role of the husband in understanding their pain and their difficulties to have sex after miscarriage. Their relationship with their bodies is deeply wounded by their loss of trust in them as is their identity after the perceived loss of “womanhood” that comes from miscarriage.

This concept of “womanhood” clashes with the rise of the independent woman and feminism. The increase of women in positions of power and the rise in popularity in women’s toys for masturbation. Are we as liberated as we want to think we are? Is female masturbation acceptable and encouraged? Or is it one more guilt trip in the well of recurrent miscarriage? I argue that, perhaps, masturbation is a form of fire that stifles our self-doubt and empowers us to rise above the “failure” to bring life into the world.

Through my own eyes, I can see women being coerced and manipulated into sex and women who don’t have enough of it. There is a very common misconception in society whereby there are two kinds of women who have sex: “Independent barren? women who enjoy sex and demand their sexual needs be met” vs “women who procreate with sex”. The latter is perpetuated as the figure of the ever nurturing mother, the one who sacrifices everything to nourish other people’s needs, the one who asks for little in exchange for giving it all. In that sense masturbation emerges as a form of self-expression and freedom. It challenges the status quo. It is seen by many as an act of selfish gratification and pleasure seeking. It demonises women as a form of rebellion from the role of mother, wife, daughter and sister. A woman who doesn’t seek to procreate with sex, but to gain pleasure, recreation and release. It is seen as having an opposing role to that of the woman who suffers post partum depression, gets pregnant putting her own body and mind in jeopardy and chooses to sacrifice her career in favour of having a family. (At least this is done for the greater gain? right?)

I am now confronted by a decision that shakes the very core of my feminine/feminist values. I always wanted to be an independent woman. It was this kind of woman who fought for the right to vote, to have legal protection in their careers, to own her own property, to wear whatever the hell she wanted and to utilise sex toys if she wanted to masturbate.

I have applied to do a Masters in Education at the University of Granada. After I learnt this morning I was accepted in it, I face a very difficult dilemma. Do I register for the Masters and risk having to move to Spain imminently with the menace of Covid looming in the horizon? Or do I stay home, jobless and dedicate my whole life to doing the recurrent miscarriage investigations and subsequent treatment? Trying for a baby as my almost exclusive job? Sacrificing the very values I fought so hard to abolish in my life? I really don’t have the answers for these questions but what I do know is that my instinct is very powerful, what I like to call the baby crazy fever. I am torn between this instinct and the rationality and values of “the independent woman”. I want to summon my inner rebellious self with a shout out to masturbation and recreation as the symbol of my freedom. A barren act. There might also be an element of procrastination here…

I put on a pedestal women like Virginia Woolf who fought to have a writing voice in a room of her own. She fought to have space to be “her” unmarred by the thick veil of the revolting patriarchy. Anne Sexton also did this. Deeply mentally troubled, these women are my heroes. They fought against the current despite their mental fragility caused by the very subjugation they had to endure. I read about Virginia Woolf that it was decided by her husband that she wouldn’t have children because “it would have been detrimental to her mental health” – How on point, Mr Woolf, at least you had the decency to let her have a lesbian affair instead! Of course, sex didn’t work with you, I believe she would have bought a Satisfyer if she was born today.

When are we going to bridge this gap? Both in Spain and the UK, we still find women being undervalued and prosecuted for being women even by members of their same sex. Tales of women getting promotions “after sucking cock”, criticised for having an abortion, shouted at in the street for wearing “sexy clothing”, undervalued and criticised for being single mothers, the stigma of female promiscuity and the castigation of women who suffer miscarriage in the workplace. All of this is still rife in society as we speak. I propose we undemonise women and women’s sexuality and we acknowledge it and respect it instead, with ALL the consequences that it has.

Without further hesitation I introduce one of my favourite poems by Anne Sexton called “The Ballad of the Lonely Masturbator”. Ladies, grab your satisfyer and a room of your own.

The Ballad of the Lonely Masturbator

by Anne Sexton

The end of the affair is always death.   
She’s my workshop. Slippery eye,   
out of the tribe of myself my breath   
finds you gone. I horrify
those who stand by. I am fed.   
At night, alone, I marry the bed.

Finger to finger, now she’s mine.   
She’s not too far. She’s my encounter.   
I beat her like a bell. I recline
in the bower where you used to mount her.   
You borrowed me on the flowered spread.   
At night, alone, I marry the bed.

Take for instance this night, my love,   
that every single couple puts together   
with a joint overturning, beneath, above,   
the abundant two on sponge and feather,   
kneeling and pushing, head to head.   
At night alone, I marry the bed.

I break out of my body this way,   
an annoying miracle. Could I   
put the dream market on display?   
I am spread out. I crucify.
My little plum is what you said.   
At night, alone, I marry the bed.

Then my black-eyed rival came.
The lady of water, rising on the beach,   
a piano at her fingertips, shame   
on her lips and a flute’s speech.
And I was the knock-kneed broom instead.   
At night, alone, I marry the bed.

She took you the way a woman takes   
a bargain dress off the rack
and I broke the way a stone breaks.
I give back your books and fishing tack.   
Today’s paper says that you are wed.   
At night, alone, I marry the bed.

The boys and girls are one tonight.
They unbutton blouses. They unzip flies.   
They take off shoes. They turn off the light.   
The glimmering creatures are full of lies.
They are eating each other. They are overfed.   
At night, alone, I marry the bed.

Green Fruit; Rotten.

I’ve decided to take advantage of my melancholic mood to write a wee article about a poem I wrote last year. Often melancholy hits in the most unexpected ways but, for me, it is silence that triggers it.

I have recently enjoyed escapism and meeting people after my third miscarriage a couple of months ago. However, there is always a moment when you close your front door and it is just you, your thoughts and your dear friend grief. This, perhaps, is coupled with the support and messages dwindling after the miscarriage, a safe passage of time that might indicate you are over it already. Silence hits me like a million bricks. Sometimes, I wish my home was haunted, and maybe it is…I also wish there wasn’t any silence in my house. I grew up in a family of eight siblings in a four bedroom flat on a tenth floor. There was always noise in my life, things going on, screams and shouts, laughter, music, fights, you name it. The silence I experience now is a reminder of the noise that was then. Of course, it wasn’t always easy growing up, but now I feel like I’ve had my fair share of silence and I want to hear screams, shouts and children playing around. Sadly this is not to be, as infertility says not yet.

A lot of the infertility journey is waiting. Waiting to conceive, the 2 week wait! waiting for tests, waiting for tests results, waiting for treatment, waiting to get referred, waiting to start IVF treatment, waiting to see if a pregnancy is viable, waiting to miscarry at home, waiting for scans, waiting for first period after miscarriage, and more waits. I’ve done so much waiting these past two years that I ended up likening my infertility to waiting for a train on a Sunday morning in Britain.

I had an experience last year where I had to wait for hours to get a train after feeling an overwhelming need to escape. I was bursting with feeling and left on a Sunday at 6.00 am but the next train wasn’t until 10.00 am, so I waited. I didn’t really know what to do with myself, but at least it wasn’t raining. This experience later clicked in my brain as the actual representation of what was happening to me. I was always waiting.

Later on, I wrote a poem about infertility when I was in the car on the way back home from a job interview that was five hours drive away (I wasn’t driving :-)) I named the poem after a book by my Spanish teacher called “Green Fruit”, it was a coming of age novel where two insultingly young teens have sex and fall pregnant. I really admired this teacher and I wish she could read what I write now, because I always cared about her opinion, she is inspiring, passionate and enduring. So I dedicate this poem to her.

Green fruit

Like a green fruit; rotten.
I see another train passing
Lying down on the platform
I see another train passing
I lie and I try to sleep
On the benches crying
I stand on concrete bollards
And I see trains coming
But I never get on the train
Been here for days, months
And years
I chat with strangers whose stop is near
They get on the train
But I linger
Sometimes we are all getting on
But they disappear
Either the train or the faces
Like on a Sunday morning
that Friday feeling fading
Like a green fruit rotten
That’s still green and hoping.

Things that people say after a miscarriage and how it feels

In an ideal world society would be able to recognise miscarriage at any stage as a form of grief. Losing someone that you love is painful and soul wrenching, but as a society we recognise that pain and we celebrate funerals as a community to say goodbye to the person we have lost. We celebrate their lives and honour their passing.

In miscarriage many women are deprived of these rituals, because they have literally just flushed a life down the toilet. Sometimes there are no remains to bury and sometimes you don’t know the sex of the person you have lost. All this contributes in processing this grief in an abstract yet tangible way. Shame and guilt are common feelings because you feel the amount of grief has to be directly proportional to how old the baby was. The lack of understanding of miscarriage grief in society leads women like us to hide from it to conceal a pain that is not recognised as worthy and proportional to the tragedy.

Zoe Clack-Coates deals with this topic extensively in her book ‘The Baby Loss Guide’, a practical take on processing miscarriage grief, which has proven priceless in my quest to understanding my own pain. I won’t go into as much detail as she does, but in one of the exercises in the book she asks you to write things that people have said to you after a miscarriage and how it makes you feel. So I have reflected on this after my most recent miscarriage and this is what I came up with.

You are still young and you have plenty of time to have children. It’ll happen in the end.”

On the surface this comment is harmless, hopeful and well meaning. However, I felt empty after having seen it. On the one hand, you do want to have hope that you will have living children in the future, but on the other hand, you are grieving for this baby and not any other baby. You will never have this baby in your arms.

It reminds me a little bit of whenever you go through a breakup and someone tells you ‘there’s plenty of fish in the sea’. That might be true, but I love this person. All the other people are irrelevant to me right now. You need time to process this loss before you even think of trying again for another baby. Ttc (trying to conceive) is the last thing you want to be thinking about. Its like you just climbed a mountain and fell off the mountain, then realised you have to climb it back again. The rollercoaster of ttc seems insurmountable at this time.

Everyone is going through a hard time right now with the lockdown.

Minimising and comparing people’s pain never ever ever works. This comment made me incredibly angry. Let’s admit it, the world has been through some fucked up shit in the last few months. We have a global pandemic, people are losing their jobs, breaking up with their partners, their dreams on hold, parents homeschooling children, people are dying!

All of this doesn’t deter one bit from the pain and grief of pregnancy loss. If anything, it enhances it. I had to go to the hospital alone and hear there was nothing in my womb alone. I also live in the lockdown. Pain is not a competition, by acknowledging my pain you’re not denying everybody else’s or yours. At that moment, I needed to be understood and listened to, but, at the same time, I am aware that not everyone can provide that or has the mental fortitude to do so. I have found people to converse with who, even if they were in pain themselves, have taken the time to talk to me and for that I’m most grateful.

“It is very common, it happens all the time, I know a person who so and so.”

This comment can be handy at times, especially if someone has been through pregnancy loss first hand and can relate to you or know someone who has. However, it can be tricky to relay other people’s stories that are not your own, I guess that there is a risk of hearsay and inaccuracy.

On the other hand, the fact that it happens all the time is alarming! Especially as it gets put down to bad luck and not recognised by medical professionals and not investigated. The myth is perpetuated by them as the 1 in 4 (one in four pregnancies end in miscarriage) and this is part of the problem. Perhaps, if miscarriage was made more of a deal of, then it would be researched, explained and there would be a solution for it. The way I see it miscarriage should be a thing of the past. We can create robots and go to the Moon and Mars but we are still in the dark as to how to prevent miscarriages.

Another common misconception of this is that ‘a pain shared is a pain halved’. But this is a double edge sword because it encourages you to compare yourself with other people, something that I had been trying to avoid for a long time as it spawns feelings of jealousy. Having said that, I enjoy the frequent success stories I bump into online, as it gives me fuel to keep moving in the quest to eventually have a baby in my arms.

“How can you keep doing this to yourself? Are you just being a bit stubborn?”

This comment is very very painful because of the compound guilt that you feel for being unable to carry a child to term. Recurrent miscarriage makes me feel like a serial killer. However, I’ve asked myself the same question every single day of my infertile life. ‘How can I keep going?’ I’ve been questioning myself for exactly 1095 days. I am sure when someone is looking for a job but can’t find one, you don’t slur them for persevering to try and find one. What’s needed is not undermining but encouragement. The world already gives you shit, please don’t add to the equation. Pretty sure you have a degree in psychology, but if you don’t understand the stages of grieving, maybe you missed that module. Rant over. Sorry, I had to take my anger out on this one. Haha.

In some occasions the instinct to reproduce takes over individual survival and that, for me, is crazy. I can’t understand why I keep going, but I do.

And that’s pretty much where we are at. There has been incredible support from people in general though. People who have listened and read my story and people who have made me laugh on phone calls or go camping with us. I understand it’s very difficult to know what to say when someone goes through recurrent miscarriage. One of my best friends told me ‘I don’t know what to say any more other than I am so so sorry’. That meant the world to me. He gave me a hug in lockdown and that also saved my life.

In an ideal world I would like to have a funeral for my babies and be able to talk about my pregnancies freely, without the taboo that a failed pregnancy represents. I would also be able to talk about my babies, their names and why I named them as if they were alive. My boyfriend has been incredibly supportive. He bought Pequeño a blanket that I will always hold dear, he bought me flowers so that the only thing I had left from the pregnancy wasn’t hair loss and weight gain. Physical reminders of my babies and pregnancies I hold very dear in my heart. It is only after I have honoured my babies that I can move on. Rest in peace. Amen.

My Pequeño´s blanket

How I came about reproductive immunology

At the start of this journey it wasn’t clear to me what the difference was between infertility and recurrent miscarriage treatment. I found myself entangled in a web of complex terminology I didn’t know how to handle. Am I infertile if I can conceive? What does a person do when they can’t either get pregnant or keep the pregnancy? So I am going to try and dissect it clearly on this post. I have to say that I am not a medical professional and I only have a rustic understanding of these processes.

On the one hand, you have fertility treatments that aim at making conception happen. Conception can be prevented for a number of reason. Most common causes are blocked Fallopian tubes, an-ovulation and sperm factor. Then you have the treatments that will help with these problems such as IVF, IUI and clomid treatments to make ovulation happen. All of these help with the conception side of things. However, once conception happens, everything needs to be in place for the egg to develop and then implant in the uterus. IVF takes the pressure off of the Fallopian tubes and develops the blastocyst outside of the uterus, then that embryo is transferred to the woman’s uterus with the hope that it continues to develop, then implant. There is a window of a few days where no one knows what happens. This is called the 2 week wait. And at this point women in the community like to say they are pupo. Pregnant until proven otherwise. At the end of the 2ww, women will take a pregnancy test, then know if the embryo has implanted. This 2ww also happens in natural conception with the added pressure that you don’t know if sperm met egg or not.

So now we are clear about that, in our case, everything looked perfect. Sperm quality was good. I was ovulating and had clear Fallopian tubes. So potentially, conception shouldn’t have been an issue. This is called unexplained infertility because no one knows why you cant get pregnant. My instinct led me to think that our problem wasn’t conception but implantation that was failing. Those mysterious 2 weeks!

When you get into this territory everything is enigmatic. Implantation failure can manifest itself in the form of failed IVF treatment or early miscarriage. It is believed by scientists that the majority of pregnancies end before the woman even knew they are pregnant. The whole thing is shrouded by mystery. The factors that come into play in this are numerous and complex. Implantation problems can be caused by an abnormally shaped uterus, infections and chromosomal abnormalities in the embryo.

This brings us to the territory of miscarriage and recurrent miscarriage. It is believed by scientists that the majority of miscarriages are caused by chromosomal abnormalities in the embryo. Because the embryo doesn’t develop properly, nature takes its course and rejects it naturally. However, the more miscarriages a woman has, the less probable that the cause of them is chromosomal abnormalities. Now, here is where egg and sperm quality play a part. There is a test that can ascertain sperm quality but there are no tests that can ascertain egg quality. (Nature is sexist, right?). So doctors tell you to take vitamins to enhance it, in particular, folic acid and vitamin D, and hope for the best.

Right, where were we? There is no way to tell from an early loss if the embryo was viable or not. When recurrent miscarriage comes into play, then doctors look at other potential causes of it. They make sure you have all the bits in the right places, they look at blood clotting disorders that prevent the embryo from being suitably fed and they look at your hormones to make sure they are doing the right thing at the right time. However, 50% of people who suffer from recurrent miscarriage will never find out why they are going through that. More mystery!

From a subjective point of view, I knew that hormones weren’t a problem for us, as we had been tested at the fertility clinic. I was perfectly supplied. 😂 at the same time, I felt each month that something was happening. I’ve been blessed or cursed to feel pregnant even before I can take a pregnancy test. At times, I had terrible cramps and nausea on the 2ww. This pain went undiagnosed and brushed off by doctors as just being ‘period pain’. So I thought to myself, is it possible that I conceive all the time, but the embryo doesn’t implant? I felt mad at this point. Doctors told me that it couldn’t be. But I was convinced. Took to Google. And stumbled across a field called reproductive immunology. I then found Alan Beer’s book ‘Is your body baby friendly?’ And the doors of heaven opened to me. In the book, he describes that a woman’s immune system works in a delicate balance that has to be just perfect for implantation. In the patients he treated the immune system was out of control and was killing off the embryos before they could implant or right after they implanted. Some of these patients suffered from unexplained infertility, some of them recurrent miscarriages. Eureka! The only theory that marries both infertility and miscarriage. What a discovery. To my utmost surprise, I found out that these theories were not mainstream, or accepted by doctors on the NHS. Hence all of my frustration when I was trying to explain that my pain was caused by me trying to get pregnant!! Mind blowing. All made sense to me. Might I add, I am still not sure that this is the cause of our plights. But it is a promising field that I have come to believe in despite the scepticism. With regards to our recurrent miscarriages, everything is pretty much a question mark right now. But now we have the knowledge that we need to keep pushing forwards. I like to speculate anyway because the waiting is loooooong!

Shocking facts about infertility

Infertility is defined as the inability to conceive after one year of unprotected intercourse. But for me infertility is much more than that. It means that one of your basic functions as a human being is nullified, nonexistent and void. It creates a hole in the heart the size of a black hole, and like a black hole it sucks the existence and the vitality out of you into nothingness. At times I found that I had to justify myself for this pain, ignore it and keep it well in check so that others wouldn’t feel offended by it. I was oblivious to the real impact that it has. I was in denial of it. But also at times I felt like I needed some facts to wield so that given the scenario I was armed to speak about the facts surrounding it. Not just with my feelings but with knowledge of real studies about the impact that infertility can have in people’s lives. So here they are. Perhaps you can use this when someone minimises your suffering.

Couples who don’t conceive are 3 times more likely to separate or divorce than couples who do conceive

Phew. How about that? So not only I can’t bring people into the world but also I am at risk to not have someone to share that pain with. Very real. Once a friend of mine asked me tentatively ‘do you think you would have broken up with him if you hadn’t had the miscarriage?’ I was deeply offended by the question. I then thought about it at home and realised that perhaps we wouldn’t have broken up, no, probably not. That made me feel so alone and destitute. The realisation that some of my relationships would have been completely different if I have had children with them. I could envision an universe where I wasn’t alone, where I had children and a husband and we were happy. But I didn’t live in that universe. I was alone, infertile and f****d by the world. The divide caused by infertility in relationships is so brutal that it can wreck then strongest of relationships. I’ve always been in awe of people that manage to stick together no matter what. But I wasn’t one of them. Some of my relationships crumbled. Most recently I have had the opportunity to work on the issues that arose in my current relationship due to our struggles, our relationship has been in peril a few times. But this time, it is afloat.

Infertility is a trauma defined as ‘exposure to an extremely distressing experience that involves witnessing or undergoing an actual or perceived threatened death or serious injury, or other threat to one’s physical integrity, or to a member of one’s family or close relation’. (Jaffe & Diamond, 2011)

This simply leaves me wordless. Next time that someone says that you need to relax and try calmly or go on holiday, please show them this. Maybe you’ll be able to stop questioning your own distress. This is REAL. Not to even speak of the grief involved in multiple failed fertility treatments and miscarriage. That just multiplies the trauma by a thousand. But even without that. Infertility is trauma and, as such, plenty of people have ongoing mental health problems such as depression and anxiety. A little present for you. Thanks ‘Tility.

A study of 488 American women who filled out a standard psychological questionnaire before undergoing a stress reduction program concluded that women with infertility felt as anxious or depressed as those diagnosed with cancer, hypertension, or recovering from a heart attack.

Just in case there was any doubt about that last one. I must confess I was deeply shocked when I read this. We are en par with terminal diseases? What? After this, it is shocking to me the little support available, the lack of free counselling services without endless waiting lists. By the time we get a free counsellor, we are chicken fried. Now, that’s soda pressing.

Women who did not have a child after an initial fertility evaluation had a >2-fold (HR: 2.43; 95% CI: 1.38–3.71) greater risk of suicide than women who had at least one child after a fertility evaluation. Women with secondary infertility, i.e. women who had a child before a fertility evaluation but did not succeed in having one after, also had an increased risk for suicide (HR: 1.68; 95% CI, 0.82–3.41)

I can only speak from my experience here. I have felt suicidal during this process. Multiple times. There was a time where I was taking very strong antibiotics that killed off all the bacteria that I owned. It was a dark dark time. Dark thoughts that I dare not relay in here. I wrote a song about this called ‘Dread’. Once I phoned the Samaritans in desperation and I felt as if my call wasn’t warranted. After all, I have a roof over my head, I have food and a loving partner. What am I really complaining about here? I guess what I am trying to say is that I was worthy of that help. I needed it and I took it and I am not ashamed to admit it. Let us vanquish all the taboos in the world.

Individuals who learn they are infertile often experience the normal but nevertheless distressing emotions common to those who are grieving any significant loss — in this case the ability to procreate. Typical reactions include shock, grief, depression, anger, and frustration, as well as loss of self-esteem, self-confidence, and a sense of control over one’s destiny. Relationships may suffer — not only the primary relationship with a spouse or partner, but also those with friends and family members who may inadvertently cause pain by offering well-meaning but misguided opinions and advice. Couples dealing with infertility may avoid social interaction with friends who are pregnant and families who have children. They may struggle with anxiety-related sexual dysfunction and other marital conflicts.

I remember swimming in this sea of unfettered emotions. Unable to put my finger on it till my counsellor mentioned the stages of grief. I was fascinated. I felt less alone when I understood that my emotions were normal and I wasn’t some sort of deformed monster. I lost all my confidence and self esteem right when I was looking for a job. When I needed it the most. I went to an interview in which I taught a lesson and I couldn’t control the class. I crumbled, I cried (after the lesson) and beat myself up afterwards cos I had lost all my confidence. Maybe I just need some TLC. But where is my support network? I’ve been accused by members of my family of drifting away and isolating myself. And I still don’t know if I could get them to read this article. But if they do, then I am sorry we have drifted apart. Maybe it is normal that I have cut myself off from the world. There were a few times that I felt I was going to have a panic attack in the presence of pregnant women. This feeling was heightened after miscarriages. It was unbearable and of incredible magnitude. I have often had to hide these feelings, as they are not socially acceptable. The Lockdown has been a blessing to me. Thanks Covid. There was also a time when I said to my younger sister, “I think I have lost my sense of humour”. She said “I am going to show you that you haven’t”. Then proceeded to pull a face we call the jackal’s face (a sign that means we are up to no good). I couldn’t stop laughing. Thanks Techi, because you showed me that I haven’t lost my sense of humour. Invaluable.

Although the psychological challenges of infertility can be overwhelming, most patients ultimately reach some type of resolution — whether becoming parents to biological children, adopting children, or deciding to build a life without children. But this resolution is usually hard won, and patients may feel forever changed by the experience of infertility.

Phew. A little bit of hope for us. I was telling one of my best friends the other day that if I could travel back in time, I’d go back to a time where I didn’t have a care in the world. I wanted to run away from the path I have chosen for myself. A path with many thorns but that I wouldn’t change even if it changed me. ‘Tility has made me more empathetic, more of a fighter, more full of love and care than anything ever would and I daresay more humble?? Haha. ‘Tility has made me love myself for who I am and not for what I want me to be. I like to listen to Shakira’s song ‘Try Everything’ where she says she always makes the same mistakes. I will always make this ‘mistake’. I will always choose suffering over the easy path. I feel honoured to be part of this community and to be able to contribute to it with my experience. So give yourself some TLC, enjoy the Lockdown and wield the weapons that we need on this war. We are almost there.