When I was 19 and it was first hinted that I had PCOS I knew nothing of the condition. Being put on the pill by a doctor made me think it was going to help. I trusted it was for the best.

It was when we got married that we didn’t want to wait any longer for nature to take its course. Meaning we were off the pill, trying, and taking every bit of advice possible. After a year, still no baby. It was time to go back to the doctor. A new one this time. I collated my history as I knew it, what measures we had taken so far and research I had done myself. Maybe being 10 years older meant I was less naive. Maybe because I wasn’t trying to conceive at 19 I didn’t ask if PCOS would hurt my fertility chances. But I can’t look back and wonder what if. I have to deal with the present.

Help on social media is in abundance. There are several groups I’m a part of on Facebook and Instagram. There is SO much advice, that at times your brain can vibrate with information. It can be really overwhelming. There’s a particular group I had to ‘snooze’ because there was too much conflicting information and it became really difficult to deal with mentally. There are also groups that discuss all types of fertility issues and I found the abundance of problems and discussions hard to sift through. I spent a lot of time reading the stories of women trying to conceive and rather than making me feel seen, it made me feel incredibly sad, would it ever happen for us?

For a big chunk of time, I came away from the group’s, my brain needed the time off and my emotions too. Amongst the search for advice and empathy, there were also pregnancy announcements and it became too hard to see. I’ll come back to this particular difficulty later.

The most wonderful thing about the groups was being amongst people who not only understood but empathised. I stopped feeling like a freak. There were other people like me in the world. Feeling how I felt, feeling failed by their gps and hating their bodies. I felt seen.

One of the beautiful things about the group’s online is the power of anonymity. You can tell people about the symptoms you have without the fear of seeing the ‘look’ of ‘omg’ cross people’s faces. It’s only natural, I’m sure there are lots of things my expressions get me in trouble for without me meaning it to. But online I’m just my profile picture and the words I write. It was lovely.

Since returning to social media for help I have been careful to pick groups that work for me. I’m part of a PCOS only fertility struggle group and I’m also now part of a love yourself group. It’s not based on fertility, but focuses on self love no matter your size. I have a long way to go when loving how I look but it has made me realise that the least important thing about me is my appearance. I’m not my dress size. I’m my dirty cackle. I am my wit. My kindness. My caring nature. My ability to love unconditionally.

The hardest part of my self love journey is accepting that even though my size doesn’t matter when it comes to who I am it does factor in when fitting into the NHS criteria and help with fertility. There are women out in the world who are my size and fall pregnant. They have no issues and go on to have a healthy baby. My PCOS causes my weight gain. And yet when it comes to the NHS that’s the only thing they see. Lose weight and come back. It almost feels like blackmail. I have questioned it in the past. At first I asked them about how they can suggest my weight causes my PCOS when my size 6 friend also has PCOS. They’ve acknowledged the PCOS being the cause of my weight but not altering the fertility criteria to fit in with this view. I could wax lyrical in the ways this affects my opinions, mental and emotional state but I’m sure if you’ve read along so far and on my other PCOS blogs you’ll be fairly tuned in to all of that!

This blog is about how other people approach my PCOS and the medical world is only one frustrating chapter of the story.

When I discuss my worries about my future with fertility I’m often told success stories. One of the more popular stories I’m told, as a ‘miracles happen’ scenario, is the one with the husband and wife who had been trying for years, taking potions, going vegan, avoiding carbs and doing away with caffeine, legs up, tracking on a calendar and having sex at the full moon, until one day they just stopped trying. They felt more relaxed by stopping all the fertility measures and hey presto, pregnant. It’s amazing. Truly. So… ‘just relax’ oh is that all? Oh boy. That’s amazing. But what if my body is in a constant state of inflammation? And what if my mental state is also determined by my body? By stopping all of the fertility measures, or lifestyle changes, this does not help me relax. I have to take more procedures just to relax my body. I wish it were as simple as relaxing. But my body and I know no other way than this.

I’ve also heard the ‘why don’t you get stonkingly drunk and just go for it?’. Well, other than this being hysterical, I’m almost wondering, have Mr W and I been doing ‘it’ wrong? I mean his thingy… well… goes… in… yeah? Am I right? Maybe I need sex manual for dummies. Or a ‘special’ movie night. With a notepad by my side just in case. Or maybe I’m being too timid? Ohhhh I need to vamp it up. Sluts are us!

I have to laugh. I do. And I also have to remember that people just want to help. I’ve noticed the same stories and advice being given as I’ve stopped hiding away. In August 2021, we got some news in the family that a baby was on the way. Usually I’d have my little wobble at home and a few sleepless nights and be okay. This time it was different, it was harder to contain my emotions when asked if I was okay and I just let it all out. How alone I felt, how sickened I was by myself and how few people understood. It was mentioned there were family members around me that didn’t know what to say to me. Unapologetically I said that saying anything was better than saying nothing. Saying nothing gave me the impression they didn’t care or did think I was a freak. Or even worse, that I had brought it on myself. On my head be it! This was where it was brought to my attention that they didn’t ask because they didn’t want to upset me. I understand that. I do. But what’s so wrong with being upset? This is important. Being a mother. A father. A parent. Is life changing. It. Is. Important. So me crying, screaming, shouting, losing it for a minute only proves that point. I’m not dead. My emotions are there for a valid reason. Being upset is valid.

Since then I have been overly open on our journey with our fertility. And I’m starting to feel seen once again. There are still wobbles, I don’t think that will change, especially when my outward appearance is like a billboard for the internal hormone imbalance. I’ll never look like other girls. I’ll never feel pretty like them. It’s a battle everyday. It’s not a battle to win. But live with. Tweak the conditions here and there. And live with it. As I’ve said before, just by altering my outlook and saying I live with this, rather than suffer with this, I’m taking just a small piece of control back.

One thing I touched on earlier is pregnancy announcements.

Seeing them online when you’ve joined an online group for help is hard. The positive pregnancy test pictures and the congratulations. It’s everything I want. I’m now on a new group that asks people not to post pregnancy news because it is triggering for so many people. And I’m glad to be part of it.

It sounds absolutely disgusting, I know. It’s one of the hardest parts of this condition. To live in such hope and fear and despair and be surrounded by pregnancies and come across like I’m not happy for them. I have a large family with a big network of friends. In this year alone there has been one arrival and four announcements, all arriving this year too. When I say that I am overjoyed for these women and families, I wholeheartedly mean it. Who would I be to say they don’t deserve it? Why should I be the only one on the planet that matters? Because I don’t. Everyone has their struggles, their journey and their own stories. But, and it’s an awful but, I’m jealous. I’m so jealous it makes me sick. The news comes in and I share in their delight and then I’m screaming inside. WHY IS IT NOT ME? WHY IS IT NOT US? I WANT MY BABY!

And do you know what happens then? I chastise myself harshly. How dare you feel jealous. They deserve their baby. They are happy. How dare you. Oh hello guilt.

The truth is I am happy for you. I’m so happy you get this amazing gift. That you are happy. That you don’t feel this pain. That your dream is growing and will soon be in your arms. That your baby will have the best mummy and daddy. Because I am a bloody nice person. And I have to remind myself of that fact. I am not a bad person.

Beneath the smile I’m crying. I’m crying because I want our baby in my arms. I want my dream. Our happy ending. Our announcement. Our congratulations. Our happiness. I don’t want to be jealous. It is the worst feeling in the world. Teamed up with guilt it battles you back inside yourself. Back into the silence and the shame of this condition.

Something that has happened since I’ve been opening up recently is how the announcements have changed. The most recent two have approached me first to tell me privately, which has made all the difference. I could crumble in privacy and that has been a beautiful consideration. I wish things were different and I didn’t have to crumble. That this condition wasn’t such a huge part of my life. A huge part of me. I wish people could just tell me and not have to consider my feelings. That I could be told in the same way as everyone else. I wish I were like everyone else. It’s almost another indicator of what is going on. It’s another example of how I am different from other people. Again, I know it’s the very best way of tackling the mess of emotions it draws out, I just wish it wasn’t this way. But I am incredibly grateful to be treated with care and compassion. The hard place in this situation is living with PCOS and feeling hidden away, the rock is people knowing and treating you with compassion, being between the two leaves you with no ignorance. Your condition is never left behind.

And that’s the realisation, living WITH this. It will always be here. So rather than embrace it, I’m learning, adjusting, talking A LOT and taking each day as it comes. Being kind to myself is the new condition I’m introducing. Whether that means telling more and more people about what’s really going on, accepting me for me or just letting the sad days be just what they are. The sadness just means what we are struggling for really really matters.

Photo by Dave Watson

Please check out his work on https://www.instagram.com/davewatson_uk/ or at https://davewatson1980.picfair.com