And Our Cervix Says…..

As National Infertility Week (NIAW) 2021 draws to a close, The Fertility Hub team wanted to end the week by giving a voice to this incredible blog, Our Cervix Says. It’s a series of blogs, which turn into plays at various points, to illustrate the frustrating yet comical situations Vicky finds herself in.

This courageous PCOS warrior lays her infertility battle bare and in her own unique fashion adds a very real element of trying to conceive. Her tongue in cheek take on her situation is an inspiration for those going through infertility and we love her style! It’s the perfect way to end a fantastic week of stories shared and this is ideal weekend reading material.

NIAW may be over for this year, but here at The Fertility Hub we will continue to shine the spotlight all year round. We will continue to support you on your journey and are always championing for better and quicker pathways for patients to access the care and treatment they need.

Over to you Vicky…

OK, this post was much harder to write than I had anticipated. The idea was just to share my experience of infertility but staring at the blank page in front of me had me scratching my head over where to begin.

I’ve tried to avoid too much self-indulgence but that’s a little contradictory when your intention is to share fairly intimate details about your personal life! There are details, which could be a little triggering to anyone dealing with infertility, miscarriage or infant loss, so if you’ve experienced any of these read with a little caution.

My intention is to help raise awareness, share a little knowledge and reach out to anyone that would benefit from more information. Failing that, you can at least have a little snigger at my expense, I’ve tried to keep it light!

Thus far I’ve been unable to create a child, that part is pretty straightforward, if you know me, you’d probably noticed. As with many things in life, the reason I don’t have children is a little complex, to explain it properly I need to zip back in time, so strap in you’re in for a ride, albeit a bit of a depressing one.

I googled depressing rides in an attempt to illustrate my point, I shit you not, it led me to “Ride City” an Iraqi theme park courtesy of non-other than terror group, ISIS. Well, it certainly paints a picture. Anyway, I digress………

Picture the scene, it’s 2014 I have a stable job, I’ve secured my first mortgage and I’m married, I’m pretty smug right now, let me tell you! Everything from about the age of 18 had been about getting to this point. Throughout my academic life I’d bought in to a powerful ideology. Work hard and you will achieve success in everything you want to, and I’d only gone and bloody done it, this adult thing was easy! School, College, University and Teacher Training had formed the foundations for the life I wanted and with everything neatly in place it was now……wait for it…. BABY TIME! Love a good stereotype me.

Now, the observant amongst you might have noticed, the baby thing didn’t happen. What actually happened involved month upon month of increased anxiety, panic induced doom scrolling and multiple GP appointments that went something like this:

Dr: How can I help?

Me: We’ve been trying for a baby and it doesn’t seem to be working

Dr: How long for?

Me: erm 6 months……

Dr: Be gone silly woman, don’t you know how busy and important I am?

Me: But……. I’m concerned there’s a problem

Dr: Imbecile get out, get out and don’t darken my door with your ovaries and lady bits again for at least 12 months!!!

Alright, I’m paraphrasing but you get the idea.

There was also the bizarre and painful acupuncture session in a dodgy backroom of a Chinese herbal shop. This was administered by a lady who spoke no word of English. She guided me through the process, using the quite frankly, underrated art of mime. But let’s not talk about that….

I was completely lost, where was I going wrong? I’d been trying so hard, yet no matter how much I focused on achieving my goal of getting pregnant, nothing worked. I felt like a complete failure. It’s almost as if hard work and determination had no bearing on my ability to conceive at all!

I kept it a secret for over a year, as a naïve 20 something I’d observed an element of theatre surrounding pregnancy and secrecy seemed like an important part of the process. I’d seen the increasing trend of quirky online pregnancy announcements and wanted to be part of it, I wanted to bask in social media glory and I certainly did not want people knowing that, in actual fact, I wasn’t all that good at the whole baby making business.

Reading this back I feel pretty mortified at how much I was missing the point of what it is to have a child. I hold my hands up, I was a bit of a dick. I’ll be completely honest, I’ve had to swallow a lot of pride here and have avoided the temptation to omit the uncomfortable bits because I think it’s important to be upfront and honest. ALSO I have a sneaking suspicion that I’m not the only person whose motivations, have at times, been driven by a touch of social media narcissism. And if I am alone in this, well I learnt the hard way!

After a year of increasing misery, my GP was finally willing to investigate further. A simple blood test and internal scan revealed that I had Polycystic Ovaries (PCOS), a condition 1 in 10 women in the UK suffer from and a leading cause of female infertility. During the scan the sonographer cheerily rooted around my insides while I watched on the wall mounted TV screen in front of me and My God, did she love what she saw!

Sonographer: I must say, you’ve got a beautiful womb!

Me: Um, thank you (poke, poke, poke)

Sonographer: It’s perfect for housing a baby

Me: Well that’s something, I suppose (prod)

Sonographer: Nice looking uterus too!

Me: Erm, thanks

Sonographer: Ah yes these ovaries look a bit polycystic to me, don’t worry about it though it’s actually very common (prod, prod, poke)

Me: OK, what about fibroids, endometriosis, blocked fallopian tubes though? Could I have any of those?

Sonographer: Why on earth are you worried about that?! (poke, poke, ram) Try not to tense up

Me: Well I Googl………

Sonographer: Oh don’t use Google!!! It’s full of horror stories!!!

Me: I understand that, but I’ve been refused medical help for the past year so didn’t know what else to do

Sonographer: Look, some women with PCOS are actually more fertile than your average woman! There’s really no need to worry!

Me: Yes OK, but you’ve literally just rammed a probe up my vagina to see why I’m not pregnant so I’m not really sure what to do with that information?

Only I didn’t actually say the last bit, instead I opted for the more polite “Oh! Weird!……”.

It’s 2015, finally I have an explanation as to why I had appeared to have doubled in size since coming off the pill. It also shed a bit of light on why I’m such a god damn hairy lady with excess hair on my arms, face and lower back. A source of much embarrassment growing up and a common symptom of PCOS.

Nobody wants to be diagnosed with a fertility impairing condition but there was a degree of relief in finally receiving a diagnosis as it marked the beginning of being able to combat it. I imagined the next steps would involve a follow up appointment with my GP to discuss the condition and what steps to take next, only this never happened. I received no further information or guidance; I was simply added to a mystery waiting list with no further discussion about what the process would involve.

But I did receive a phone call about a year later to arrange an appointment with an IVF specialist…..Yes, really!

By the end of 2016 I was very depressed and my marriage had ended. I’d watched most of my friends fall pregnant and my Facebook feed was full of new born babies, meanwhile my life was “Right Up The Shit” as one of my friends eloquently put it at the time.

The breakdown of my marriage had forced me to open up a little more but by this point there wasn’t really much comfort in it. Where are all the 29 year old infertile, divorcees when you need them?

Now, I have a great family and wonderful friends and have received so much support over the years; I really do consider myself to be incredibly lucky. But when you’re in the depths of depression the kindness of others can only really help so much. Nobody could fix me, not even my GP apparently and nobody really wants to be the barren lady crying out for help, so I just sort of……. stewed on it quietly.

The decision to keep trying for a baby at this stage was taken out of my hands, I was living the single life (woop for me).  I’d entered an unfamiliar and unexpected new phase of my life. Navigating the dating world as a fertility crazed 29 year old was a challenge, dating had changed significantly since I was last single at the age of….. 16!*

*The year was 2004, we went to the cinema to see the disaster movie “The Day After Tomorrow” and my date made a complaint to the usher about the size of the screen, apparently size does matter! He was wearing a knitted gilet – the one who got away eh……

With each date I’d remind myself, no divorce talk, no fertility chatter. I get it, it’s not really first date material! But the fact was I found it near on impossible not to go there, it had dominated the past few years of my life so how was I supposed to leave that part out?

I was also acutely aware of my biological clock tick, tick, ticking away; the media likes to remind us of this every five minutes just in case we hadn’t realised that we each have a best before date. It turns out dating as a 30 year old woman is not as glam as the American sitcoms make it appear, who knew?

My desire to have a child hadn’t changed and I’d become so in tune with my body and monthly cycles that each passing month simply represented another failed opportunity to be pregnant, exacerbated by my PCOS symptoms such as bloating and severe breast pain, which ironically almost seems to mimic pregnancy.

For a long time I felt like I was going mad, I didn’t feel that anyone could relate to my circumstances so continued to keep most of my thoughts to myself, which just caused further isolation.

I tried joining infertility groups, PCOS support groups and fertility forums but found them filled with women sharing Basal Body Temperature charts, discussing the quality of their vaginal mucus and sprinkling god damn “Baby Dust” left, right and center ….

Helpful to some but at that point in time, not me; it simply further reinforced the idea that everyone else was falling pregnant and I was on my own. Looking for direction I turned to my GP, keen to make a change I thought a renewed focus on my health could be a productive way to focus myself and make some positive changes to my lifestyle.

First step was to work on my mental health. Discovering that depression and anxiety were both common side effects of PCOS was a bit of a lightbulb moment; personal circumstances aside, it transpired I was actually more susceptible to suffering from poor mental health. I couldn’t help but wonder if an exploration of PCOS treatments might lead to improvements in my mood. Feeling enlightened and hopeful I visited my GP to see what options were available to me.

Drum role please….

Dr: Well, I can give you Anti depressants orrrrrrrrrrrrr you could go back on the pill……

Me: OK, but what about something that actually treats the PCOS, maybe that would help?

Nix, Nada, Nope, Not possible.

I’d tried antidepressants before, they made me unwell so I was keen to avoid this route in the first instance. And The Pill, well it caused most of the problems in the first place. The contraceptive pill didn’t cause my PCOS but what it did do is mask all symptoms throughout my early 20’s and disrupted my menstrual cycle so I had no idea what was normal for my body.

Secondly, given the fact I was hopeful that someday I might have another shot at the whole mum thing, you can perhaps understand my reluctance in returning to hormone altering contraception. Essentially, I was offered two sticking plasters, neither of which dealt with the root cause of my problems. Eventually I was handed a pamphlet, a self-referral form for counselling.

OK, OK it won’t tackle the physical implications of PCOS but the opportunity to talk to somebody can only be positive, right?

So how did you get on with the counselling Vic?

Well, I was placed on a waiting list for 9months, eventually offered a 4PM slot in Bognor Regis a 1hr 30 min drive from work and I couldn’t make the appointment, so I was taken off their waiting list! Pretty much back to square one then? Yup.

I had read about counselling services for couples undergoing fertility treatment, for miscarriage, still birth and infant loss, but nothing seemed suitable for me. I had so much hurt inside but nowhere to dump it. I was chronically depressed but was so conscious of those who had experienced physical loss , comparatively what did I have to complain about? I’d become someone I really didn’t like; I was happy for my friends whose lives continued to move forward, but I was devastated for myself and had no language to express it.

After months of hopelessly clawing my way through the dark, I found myself returning to the internet for support. By now I knew that Web MD and Mumsnet were probably areas to avoid but there had to be something out there that would help me. I’m acutely aware of the bad rep Twitter has gained in recent years but for the purposes of reaching out and finding help, I found it to be invaluable.

In quite a short period of time I began stumbling across helpful articles, which led me to another and another and another until I realised I’d finally found exactly what I was after,  a community of survivors, medical professionals and mental health experts all working together to raise awareness and offer to support to those with infertility.

Exploring the medical side of PCOS helped me finally understand the condition, there is no cure and unfortunately as with most other causes of infertility and uniquely female ailments, there is very little understanding across the medical profession. On  average it takes a whacking 7-8 years to receive a diagnosis for Endometriosis!

However, with a little basic knowledge there are steps you can take to improve your symptoms such as improving your diet, gentle exercises and understanding any vitamin deficiencies that you may have.  I’ll include further information about health in a separate post but thought it worth stressing: Understanding your body can be crucial in managing a wealth of ailments often dismissed as part of womanhood.

This applies to ALL of us, not just those concerned with fertility. Ladies, it turns out chronic period pain IS NOT SUPPOSED TO HAPPEN!

Spotting in between periods? NOT SUPPOSED TO HAPPEN!

Blood clots, stagnated brown blood at the start or end of your period, headaches, bloating, breast pain, PMS? All NOT SUPPOSED TO HAPPEN! 

We might be used to these things, we might have been told it’s completely normal, but the fact is, it could be a symptom of something easily addressed if you’d only known what it was.

And if period chatter makes you squirm, sorry but not sorry! As with everything, more discussion leads to better understanding for us all and in turn, better health – PERIOD!

The more I read about infertility, the more I realised there were other people like me, who had experienced the same challenges and much, much worse. Quite quickly I picked up on common language being used amongst mental health professionals, infertility campaigners and support groups; words such as Trauma, Disenfranchised Grief and PTSD.

It had never occurred to me that I had suffered trauma and certainly not grief – what was I even grieving? I associated the word with death, no one had died!

Bare with…Frantic Google search ensues……

Grief-noun: Keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret. A cause or occasion of keen distress or sorrow.

Oh, so nothing to do with death then? Ha, who knew. Well I guess that’s validation then. Approaching 7 years of grief…….. Sexy, huh?!

It turned out that all I needed was a bit of validation, empathy and understanding to set me on a brighter path and all it really took was the discovery of other people talking about their own experiences alongside a basic understanding of female biology.

So, there it is. I’m not fixed, still no baby, still infertile but I’m on the up and life got better.

My intention in speaking so candidly about the most awful time of my life is that it may help somebody else find their brighter path a little bit quicker than I was able to find mine.

Over the next few days I plan to share some of the information and resources that have helped me. As it reflects my personal experience of infertility and PCOS it’s probably lacking in diversity, but it’s a start a least. If anybody has a resource they think would be informative or helpful please let me know!

For those of you pondering this…..An infertility diagnoses does NOT mean you can’t ever have a child, it’s a medical term used for anyone who are unable to get pregnant after a year of trying to conceive. Weird huh?

To follow Vicky’s blog and get in touch head to Our Cervix Says.