Tag: infertility

Because they care

Today I donned a blue dress. I’m not a fan of blue but it was a special occasion. 

A baby shower for my cousin. She is having a little boy. 

Hence the blue.  

The balloons were hung with care. The sandwich platters laid out just so. The sun even made an appearance. Do I like baby showers? Yes. Do I find them difficult? Also yes. 

It’s a reason to eat party food, which are just little bite sized morsels of foods of your own choosing, get together with loved ones and a chance to celebrate the future. Someone in your life is happy and therefore sharing that happiness is only natural. 

Today was no different. There was chatter and laughter. Quizzes and games. The games had us guessing the weight, name and arrival date of the baby boy. Even though when the event was announced I had been apprehensive about going, I didn’t feel anxious or upset by being there. By having time to prepare over the last few months, my feelings of insecurity around our own fertility was put on the backburner and I sat for hours with family enjoying the time together. 

As people slowly drifted out of the door to travel home, Mr W and I sat with my cousin’s wife and thier baby while the gazebos came down and the empty plates were tidied away. Baby Grace is 5 months old and so far I’ve managed to avoid the cuddles. It has to be said she is the smiliest baby with the most adorable chubby cheeks and so my trepidation about cuddles has nothing to do with her. I’m just very aware of being around baby’s and how it can affect my mental health. Nothing like a baby being in your arms to remind you that you don’t have one of your own. And then, she was in my arms. I didn’t crumble but by now my poker face is my real face. I’m getting pretty good at it. 

After everyone but us had left we stayed behind to chat. My Aunt got upset and said she wondered how on earth I had coped. Despite my insistence that I was fine she got really upset on behalf and it took a while to calm her down. In all honesty I hadn’t really felt sad until that moment. Like I said before, the time to mentally prepare for the day had helped a great amount. I was not however prepared to help someone who was sad for me. 

It is a difficult path to tread when struggling with fertility. If you keep it close to your chest you end up feeling alone. There is also the odd occasion when and if someone asks what the situation is that you’ll both feel awkward for needing to discuss it. Alternatively if you do tell those around you what’s going on, you open up the can of proverbial worms which can wriggle around at any moment. They should feel comfortable to ask how things are going whenever they want to. Unfortunately it can catch you at a time when you are quite happy ignoring the situation. It then brings the whole issue to the forefront out of the blue. 

So what’s the happy medium? How do we tell people so they are in the know and yet not have to talk about it when it’s the right time for them? There is now how. You can’t control it. You can perhaps ask to talk about it another time. But what if it’s a reaction like I had today, the sadness of tears. It almost feels strange to sit there consoling someone who is sad for yourself. I’ve thought about it a lot. Would I rather no one know? No, been there done that. Would I rather talk about it all the time? No. I need space from this reality from time to time. 

So what is the answer?    

Ultimately I don’t think there is one. I think as honest as we have been about our struggle is just how honest we have to be about our feelings when approached to talk about it. If today was a day I needed to ignore my feelings then so be it. If someone else gets upset I need to understand that too. If I need to scream I will. If we aren’t in the place to talk it is okay to say so. It all comes back to being honest and open. It’s the only way to be kind to ourselves. We told others to share a part of ourselves that is hurting. They ask because they care. 

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

Pcos, fertility and me

It’s easier to write this part of my journey down, because it’s more fact and time based. I warn you now, this is a long post. Because it’s been going for a long long time! That doesn’t mean that time has made it easy. The longer it goes on the harder it gets. In fact it’s been so hard I’ve considered giving in. Both Mr W and I have considered letting the other one go so they can go have their babies and be happy. But I’m afraid he is stuck with me. I want HIS children. He’s the reason I want children. I see him with children and it makes my heart swell. I know he feels the same way about having children and I think it’s why we are destined to be together. To be parents. I know we would love our child to the ends of the earth. A part of each of us. The most perfect finish to our family. 

So here’s the full medical side of my journey. It’s hard to write. And for those living with PCOS it may be hard to read. I don’t want you to see it as all the doom and gloom it’ll inevitably portray because everyone’s story is different. And I seem to have found the rabbit filled with rabbit poop. For a long time it didn’t seem to be going anywhere. But let’s just dive right in shall we?

As I mentioned in my blog ‘Pcos and Me’, I got my first period at age 13, and then nothing for over 6 years. I plucked up the courage to go to the Doctors at 19 when I noticed other symptoms of the condition ‘Polycystic Ovarian Syndrome’ I had read about. I’d only ever been to the doctors about chest infections before. I remember feeling so embarrassed and ashamed of the condition. I thought back then it was my fault. That my weight was the cause. I sat in the Doctor’s office. Hands shaking. And briefly told her what I thought was going on. As I explained why I thought I had the condition, tears fell down my face. I’d been bullied over my appearance all my life and now all the added symptoms were making me feel like a freak.

“WHY ARE YOU CRYING!” She said abruptly, a look of disdain on her face. It’s funny, even after all this time, I can see her before me, her face painted with this ugly expression.

I honestly don’t know what I said. It certainly wouldn’t have been anything to defend myself. I was not a fighter back then, I’m hardly one now, although I’ve learned to bite back a lot more. I was prescribed the pill and sent for a scan. The scan itself was intrusive and I’d never felt so violated. I was extremely inexperienced back then and I wish I had known what I know now. To be diagnosed with Pcos they can do a blood test, the cysts on your ovaries (if you have them) are a symptom, not a cause. I may have been bold enough back then to say no. 

For 8/9 years I was on the pill, the only precaution I was told to take was with my legs. The pill itself could cause blood clots in the legs and if I felt ‘odd’ I should go back to my GP for a follow up. I suffered with headaches, was moved to another pill and that was the story for all those years. False periods, brought on by a pill. That was their answer. Hindsight is a wonderful thing.

Fast forward to February 2016 when I had one of the worst ear infections the walk-in centre physician had ever seen. I was prescribed strong pain medication and antibiotics. It wasn’t until my mum mentioned the need for Mr W and me being careful as antibiotics would cancel out the pill. So I stopped taking the pill during that time. A month later, my period was late. We were really happy. It wasn’t on the agenda with moving house on the horizon, but the possibility was exciting nonetheless. Two weeks passed, and my period returned. It’s funny how much you never knew you wanted something until it’s taken away.

We both decided I would stay off the pill. Just to see what happened. Naturally. It took a year for my periods to come back naturally. But as I hadn’t had one in 6 years before the pill I was astounded. From early 2017 to our wedding in late 2018, we wondered, but nothing happened. After the wedding, I started my research into Pcos and fertility. I had been using Ovulation pee sticks to track my cycle. But after 3 months of expensive tests, nothing was showing that I had ovulated. I started tracking my basal body temperature. I was woken up at exactly the same time every morning, by Mr W when he left for work, with a thermometer shoved in my…mouth (haha) and track my temperature. It helps people with Pcos track ovulation much better than the OPK sticks. The sticks detect the luteinizing hormones in urine, and when this is particularly high it means an egg has been released. This gives you a clear indication on when to do the baby dance. Checking your temperature is more accurate when you have Pcos, because the shift in your hormones often renders the sticks useless. So we started temping. And yet no baby.

By September 2019, I wanted help. I was scared. Doctors left a sour taste in my mouth. I registered at my local GP’s as a new patient. We had lived here for over 3 years and I’d avoided them for long enough. I was told by the nurse who took my registration that the surgery was getting all new doctors, fresh from medical school, that they’d be fresh, raring to go and wanting to do good. I must admit, I was drawn in by her excitement. Before my appointment I took the time to write down my entire history. All the results I had from the temping, the lengths of my cycles for the past two years and our desire to have children.

She was lovely, she listened when I talked about my research and held my hand as I cried. Unfortunately my emotions, whatever they are, leak from my eyeballs. It’s seen as a weakness by a lot of people. When I’m upset I see it as a release. When I’m angry, I see it as the much needed vent my body needs instead of screaming at someone. Anyway!

She ordered blood tests, and told me exactly what they would be looking for. Most of which I had researched so I was really pleased. Another external and internal scan. And we’d rearrange a date for the results. Blood tests are easy. The scan went okay, but the woman couldn’t find one of my ovaries and said she “wasn’t at liberty to tell me what she saw”. Hey, thanks lady. It’s only my body. No I didn’t say that. I wish I had. 

The next appointment at the GP, armed with my notepad, results were discussed. No cysts on ovaries. But my blood tests results as well as my other symptoms confirmed Pcos. I finally had a diagnosis. 12 years after asking for help. I had a path I could follow. She referred me to the hospital under the Gynaecological department. It took 4 months to see someone. In March 2020, a week before the country went into lockdown, I saw a consultant. They weighed me. Measured my height. And he ordered a blood test and internal scan before even looking at my notes. When he said what he had done, I told him that I had already had them. His response “Oh, well, you can do them again.” Oh wow, thanks, I just love being probed! And no I didn’t say that either. By this point, I thought it was what was needed. After all, I was under the hospital now. The rest of the appointment was solely based on my weight. It didn’t matter that weight is a symptom of this condition. That despite dieting and/or exercising, nothing much made a difference. He was working to an NHS criteria that bound him to rules and to treat me like a number. I asked what the next step would be, and he said they could try me on an ovulation drug to induce ovulation, but I had to lose weight. So for now there wasn’t anything they could or would do. I mentioned Metformin. My research had taken me down the route of the insulin drug that was given to diabetics. Now, I’m not diabetic, it’s been tested when I’ve had blood tests. But it’s had a success rate in helping women with Pcos fall pregnant. I remember the look on his face as I was talking. But he gave me the prescription anyway. I felt a small victory but remember having to sit down inside the corridor once I had left to cry. Mr W tried to console me. But I felt I’d hit a wall. Why was this criteria so harsh? 

I was able to get my prescription before the world lost its mind. My next appointment letter was sent for October 2020. Six months! I had the blood test and scan, this time the nurse (different lady) spoke to me through it and was so lovely, she must have known how hard I found this. I doubt anyone feels any differently. The next appointment came round, and due to covid, or so I thought, was conducted over the phone. It wasn’t the consultant this time, but a lady. Nothing was mentioned about my tests and all questions were based on my weight. They told me they’d arrange another appointment for 6 months and another blood test. Initially this was cancelled due to covid and in May 2021 I had my phone call. Another phone call. Another different person. He said my latest blood test results showed great changes and it was all pointing to good news. Then he said “Can I ask, do you want children?”. I remember being so shocked I laughed. I said that of course I did, that’s why I was going through all of this. He said that he would refer me then to the infertility clinic. The appointment would take approximately 3 months to come through the post. 

I remember, afterwards, I hadn’t asked for my blood test results. I was curious to see what had changed. I had written them all down from the first test, so I wanted to be able to compare them. I called the hospital and after getting through the absolute maze of the switchboard and endless answering machines I got through to my consultant’s secretary. She said she wasn’t allowed to give me my results. And that was that. I believed her. Afterall, she knows what the NHS are allowed to do and not do. Right?

A few weeks later, I received an appointment for another scan. I was so confused. I had asked the man if I needed any more tests and he said no. The scan appointment was in less than two weeks, I didn’t know what to do. I sat on the couch and decided I needed to know why I had to have another scan. For the better part of 7 hours, I sat on my phone, going between the switchboard, answering phones, the endless ringing of the reception and getting nowhere. In the end, I called the maternity department, just so I could talk to someone. By then, I was spitting feathers. I spoke to a woman, who I now feel so sorry for, and explained the situation. She said she would send an internal email to my consultants secretary and they would call me. Low and behold, she called. I explained what had happened and she said that I had been sent the scan appointment in error, she had no idea how it had been sent to me, but she was sorry. It turns out the woman it was meant for, had a different name, date of birth and was in severe abdominal pain, and needed the scan. I often wonder what on earth they would have said if I had had the scan and what would have happened to the other woman. While on that phone call, I asked the woman again for my blood test results, she said, and I quote, “Well, I’ll send them to you this time, as we kind of owe you.” Gee, thanks! I also mentioned that I hadn’t had my referral yet, she confirmed that it had been sent electronically to my GP and to check with them. She gave me the time stamp down the to second I was sent. 

My doctors said they hadn’t received anything, August came around, and I still hadn’t had my referral come through, so I called the hospital again, geared up for another long wait. They said they would send it again electronically. I checked with my GP. Not received. This to and fro-ing had become a real issue. Another call saw me ask the hospital to send it via the post to me, and I would personally walk it (on a velvet cushion) up to the GP’s office. I was told once again, they couldn’t do that. But they would send it via the post to the GP. I leave it a few weeks, and yet the doctors don’t receive it. You can imagine by this point, I’m losing my mind. The very real feeling of paranoia has set in. Another phone call the hospital  to check what’s going on. Yes, they posted it. And yes they have the right address. They’ll send another one. By November, I felt like a yo-yo between the two offices and I was not getting anywhere.

23rd December, my 6 monthly phone call with the hospital. Another different lady. No results to read out. Only the same question about my weight. I broke down. And she listened. She was so kind. I let it all out. How I felt left out in the cold. That my weight was the only focus for this department. How hard I had tried for years. That I was being left behind. My mental health in tatters. When I told her about the referral and the troubles I had had. She said “What if I print the letter off and you give it to your GP?” I was sitting on the bed at the time, and I felt my body crumble. I explained that I had suggested that months ago, and was told it wasn’t an option. She said she didn’t know why and that as it was 3:30pm I’d have to go and get it right now, as they closed at 4pm. I interrupted Mr W’s Christmas cooking in the kitchen and we raced to get it. Bless her, she gave me all my letters and updates in printed form. By now my faith was all but gone and I said I wanted copies of the letters before ever letting anyone else get their hands on them. 

I enjoyed Christmas after the 2020 debacle and by January I had my copies. I took them to the GP and explained EXACTLY what needed doing. That they were for a referral and it needed actioning. I even left with copies. I knew the referral could take three months. So thought by the end of April I would have answers. 

I celebrated my birthday in March for the first time in three years and after a discussion with family earlier that month decided to contact the GP for an update afterwards. I had a lovely birthday and upon my return prepared myself for another phone call. At this point I am so geared up for bad news and being ‘fobbed off’ I’m not sure what else could possibly happen. Up until this point shock has hit me at each and every turn and I have believed everything I’ve been told. This is key to remember. 

The call to the GP is awful. I explain why I’m calling, I would like an update on the referral that was requested in January. I know that it has only been two months, but an update would be appreciated. That’s when the bomb is dropped. The referral has NOT been sent on to the hospital. I lost my shit. I said how could this happen when I basically, no not basically, literally told the receptionist what she had to do. The lady on the phone said she had no idea but she would call me back. She did in ten minutes. She had spoken to my GP personally who had requested the referral now marked as ‘urgent’ and I would have an appointment within a month. I could even go that night for the confirmation of a referral which would give me passwords and such to call the appointment line for an update. 

I applaud you for reaching this far. It’s quite the story isn’t it?

Four weeks later, no letter, I call the appointment line for an update, they say it can take up to 18 weeks as this is a routine referral. I say no it was put through as an ‘urgent’. No, they say, I’m afraid it wasn’t and only your GP can make the adjustment. Now I’m a calm person. I assure you. But now it is 11 months since the referral was first mentioned. I’ve been on and off the phone chasing people from pillar to post. I was a human yo-yo. I called the GP and got the same lady I spoke to in March. She remembers me. Fancy that!

I explain the situation, and ask to speak to the practice manager. She is shocked. But I am finally done screwing around. He called me back within half an hour. I literally leave no detail out. I tell him everything. He says I am to go through him from now on and he will change the referral to urgent. And will personally email the appointment line to detail what has happened. He also says he will see if he can hurry along any of the tests they may need.

As of the 27th April, I have an appointment. WE have an appointment. For August. At the time I was quite upset and called the proactive manager to see if it could be brought forward. He said he would try but he was personally surprised how close the appointment was. Even at 3.5 months away. 

My dear Mr W has had to deal with the psycho that has erupted out of me on numerous occasions. The fighter in me is exhausted. The scariest part is I believed everybody every step of the way. Am I stupid for doing so? Does it honestly take blowing your lid to get stuff done? That ultimately is so very sad. 

We’ve come to terms with the date of the appointment and have planned to get as healthy as possible. If I have to walk into that appointment and have them point out my weight, it may honestly just break me. I am not my weight. This condition is not my weight! Something has changed in the last few days in my mind. Even if we weren’t trying to conceive. My weight is also a cause for concern with health matters. According to blood pressure and cholesterol checks, I’m healthy. Really. But weight does affect other things and I want to be around for a long time. I have a lot of living to do. With Mr W. With everyone who makes my life what it is. There’s also a whole world to see. 

Since I’ve got the appointment letter it has been moved to the beginning of July. I’ve had a day to process it. I’m not scared to admit that I was absolutely shocked. It’s 7 weeks closer than the other appointment which means seven weeks less time to lose weight. But it may just be 7 weeks closer to a baby. 

The fear of Doctors is not going to go away anytime soon. I believe the other day I said I was petrified and to be honest my hands shake, I feel sick and my eyes leak again. Just at the thought of being in that office. The trust you place in them is enormous. I wish my story was different. I wish the lady who saw me when I was 19 was empathetic. She didn’t need to be sympathetic. I didn’t need a shoulder to cry on. I just needed to feel like I wasn’t alone. That I wasn’t a freak. I’ll talk about how I’ve tried to combat that very feeling in one of my next Pcos blogs. 

The fact it’s taken me a year to get this far is an extortionate amount of wasted time. Especially when you consider the longest amount of time to get an appointment was initially 12 weeks. I’m really trying to be positive. It’s hard considering the anxiety I deal with on a daily basis. The downfalls of the last year and the fight to get this far have left me unsure of who or what to trust going forward. However, something like this must make someone stronger. Surely that’s how it works. 

Maybe the doctors will start fearing me!

Photo by Dave Watson 

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

Little Excerpts. A Day in the life of.

Just a few glances at how living with Pcos and my mental health changes day to day:

25-2-22

As I’m doing the crap job of putting washing away (although it does help quell me on anxious days by being organised etc) I’m listening to a podcast on being plus size called Go Love Yourself. 

I’m not a podcast listener, but thought why not. And tbh they’re very upbeat, and it’s way out of my comfort zone to even think about being as confident as they are. However it has brought to the front of my memory block how many times I’ve been called out for my weight. 

I’ve found photos from nights out where someone in my friendship group has zoomed in on my stomach because it didn’t look flattering in a certain outfit or at a great angle. 

I’ve had someone draw me as a head on top of a circle when drawing a ‘stick’ person. 

I’ve even been flirted with on a night out and then had the guy go back to their mates laughing because they got the number of the big girl. 

This was all over a decade ago. Which seems so long ago and like yesterday all at the same time. And I was smaller then than I am now. And yet still wasn’t seen as normal or worthy of being treated like everyone else. 

So I’ll continue with the podcast, until it makes me cry, or rage, but it’s not been easy having those memories flood back. 

I’m not my weight. Nor my dress size. 

I’m a girl who has PCOS which 

– causes my weight to fluctuate whether I eat a salad or a burger

– makes my body cells stress out and alter the hormones in my system,whether I’m sitting down or running 5k

– go from laughing until tears are streaming down my face and then switch to actual heart wrenching sobs because my emotional well-being is shot to shit

– causes a vast number of fertility issues which can’t be solved by getting drunk and just ‘going for it’ with the husband or relaxing and let motherfucking nature take its course. 

– so many other issues that I tackle every single day

And yet PCOS is not my personality. I’m caring. I’m kind. I’m sarcastic as fuck. I love entirely and unconditionally. I’m awkward when I first meet people so I’m really really loud! I’m actually really shy. I’m quiet. I like to be quiet. I’m intelligent. I’m artsy. I’m creative. I have a filthy sense of humour. And a proper cackle. I say sorry way too much. I’ll help pretty much anyone just so they never feel bad about themselves or their day. 

I’m me. Not my weight. Not my dress size.

9-3-22

So for the last three days I’ve been in Birmingham. A trip I latched onto for a free hotel stay with Mr W while he worked here. I’ve been left to my own devices in a new city for 13+ hours a day. And if you’d have said to me as little as 3 years ago this would have been an issue for me I’d not really have thought about it. But I have been a nervous wreck! And I truly believe this is down to covid and lockdowns and losing that sense of independence.

So I’ve wandered aimlessly around shops, toured the old town, gone up to a rooftop garden and today I’m going to the cinema alone! Originally I planned to stay in the hotel room, sleep, veg and pamper. But my inner explorer could not be quietened. It’s that voice that helps me more than I know!

It feels so stupid to say I’m proud of myself because to be honest this is just an every day activity in the mundanity of life. If I hadn’t had such a breakdown when we got up here I’d not have realised what a big deal this was.

I have to remember to be kind to myself. But also remind myself that life has changed so dramatically and yet brave I’m still here. Deep down.

18-3-22

I look at this picture and feel sad. (the picture if you can imagine is me in jeans, a wrap top, posing in the mirror, I must have been going somewhere.)

Sad that this body turns 34 next week and hasn’t achieved what I want. Upset that it has let me down.

I try to be positive all the time, tending to my mental health daily and forgetting my body needs me too.

My body has let me down, it’s true, but more often than not I’ve just given in to it. Let it do its own thing. I’m kinda feeling the need to fight against it more and more. Which is hard because my mental health doesn’t let me fight much these days.

How can I control so much about my life to feel safe and secure,  without taking control of my physical health?

In a way, my body letting me down has led to me letting my body down too. I need to fight back. And I’m starting to believe I actually can. 

Today

So there we are, my biggest outbursts of the year. And it’s only May! We have an appointment looming with the NHS in August. I know they’ll mention my weight. And as I’ll discuss in the next Pcos blog, it’s been a rough ride just getting this far, and because of this, I’m angry. I don’t like being angry, it’s self- harming to the max and does nothing but add fuel to a fire. Except no one else is tending this fire. The NHS disappears and comes back at their own will. God love them for what they do for us Brits but it has been hell! My actual mental health plunges at every single mention of Doctors and hospitals. I’m yet to have a reasonable experience. I have to play a particular game of 2 steps forward 4 steps back with them and where I used to get depressed and shrink away, I can feel the sense of rage fuel actual determination. For the very first time, I’m sitting and thinking ‘Oh, so you won’t help me until XYZ is done? Well, let’s just do that then eh? Let’s get you to do your bloody job! Because I DESERVE THIS. Mr W deserves this!’

Deep breath! Breathe out the anger. Breathe in the determination. 

I’m off for a run now, pray for my back, knee and shins. Ta-ra! 

Pcos and Me

This is a highly personal piece today. It’s a part of my life every single day. There is no ‘cure’, but there are ways of handling it to make it easier. The amount of information out there is absolutely overwhelming so if you suspect or have PCOS please don’t think I’m the oracle or that my research is all there is to know. There will also be opinions that have been built upon emotionally because of years of discrimination and sheer lack of help and awareness. I’m here to discuss my relationship with this condition and try and try to work through some of my issues of embarrassment I have when talking about it and  hopefully, also giving you the absolute promise that you are not alone.

My pcos symptoms started in my mid teens. I had my first period at age 13 and then nada. Nothing. It didn’t happen again for over 6 years. To be fair at that point, I didn’t know about the condition and I wasn’t educated enough to think there was a problem. I simply thought that periods took a while to get going. In school, our sex education lessons saw us separated into groups of boys and girls and taught the ‘important’ things about our changing bodies. The boys were led to a different classroom, where undoubtedly condoms were thrown at them and they were told to be safe. I’d like to point out here that my disdain for the ‘lesson’, yes you’ll notice the disdain with the amount of apostrophes I’m using, comes with my learnings over the years about my condition. In the girls class, we were given a magazine about what it meant to be a teenager and it came with a tampax. How about that! And that was it, nothing about being safe during sex, and absolutely no information about irregular periods. I appreciate that talking about fertility at such a young age may be inappropriate but it is an education I feel needs some major attention. Because where these conditions can cause infertility, they also come with a vast range of physical and mental health implications too. It’s also important to point out that life is not a fairytale, getting pregnant is not always easy, marrying the prince, living in the dream castle and getting pregnant on your wedding night isn’t always the case. If you’re anything like me, you’ll marry your prince after living together for four years and fall asleep on your wedding night. Romantic! As important it is to tell children the lesson of being safe during sex, because you may catch something or indeed fall pregnant, it’s so damn important to tell them that there is another range of stories. The couple that struggle with infertility. The couple that sadly had a miscarriage. The couple who had children young. And the couple who did not want children! There is not just one narrative. So this needs to be taught or at the very least discussed. 

It’s been twenty or so years since that enlightening experience, and where then I would have wondered why endometriosis or Polycystic Ovarian Syndrome, among other fertility and debilitating conditions, was important to learn about, I’m now a 34 year old woman teaching myself about it all. I suppose moving forward after this piece it would be prudent to ask some teens about the sex education they are receiving, or better yet, the teachers who have to give it. I dare say they are working from a guideline set out by some high seated council that knows best! Anger unfortunately will spill out from time to time. This is your warning. 

Daily symptoms of this condition are so surprising that at first most of them seem like a joke. However after countless medical texts, research pieces and noticing the patterns within groups of likewise women, the actual list of symptoms is enormous! When it comes to myself, I have all of them bar one or two. It’s only through my self education that I’ve found symptoms I wouldn’t have thought were out of the norm for everybody to be honest. But hey, ho, they are all part and parcel of this condition. Which in a way, makes me more accepting of the symptom as a whole. One of these for example is anxiety.

Ah the ‘A’ word. It has been brought into the glaring spotlight for the past 3-4 years and it’s creating awareness where once there was none. In my eyes, there are two forms of anxiety. There is the dread of going to a party and wondering what to wear/eat/drink, the feeling of shyness you know will creep onto your being as you are presented with a room full of people and there’s definitely nervousness such as when you read a piece of news. Covid-19 has reached the UK for instance. This type of anxiety comes and goes with the occasions that are making us anxious. It’s something everyone can feel at any time. And in most cases you live without it more than living with it.

And then there’s the other type. The complete saturation of anxiety into your whole being. The utter lack of sleep when analysing something minor. Maybe text that hasn’t been returned from a friend. Last year I had a full on meltdown because a friend hadn’t replied to my messages and I thought I had done something wrong! The heart racing and yet immobilising fear of new situations; answering the door to a stranger, talking on the phone, starting a new job. There have unfortunately been times when I’ve let the doorbell ring, or the phone go unanswered because I’m panicking on the other side. And quite surprisingly, I have avoided job interviews too. When you live with anxiety, you develop around it so fully that you don’t initially recognise it as anything, you fully believe it’s just how everyone is. Everyone at some point in their lives has surely travelled for 90minutes on the train to university only to turn around at the lecture room door because people will turn to look at you when you walk in, right? It seems when looking back, I’ve been struggling with anxiety for a long, long time. At the time it just felt like I was a nervous girl. 

Anxiety is a big symptom in the world of Pcos, how it affects people mentally is absolutely draining. Pile on the other symptoms which will make your anxiety worse and you’ve got a condition that needs more attention from the government and healthcare institutions. Some of the biggest symptoms I deal with are:

Weight gain – I’ve always been the bigger girl. At age 14 I was a size 14/16 and was very aware of it. Now I’m bigger and yes I’m still aware. In the beginning I was conscious of the fact that I had pcos because I was bigger. And in the most recent of years I have discovered that it is simply not the case. Weight gain is a symptom of PCOS not the cause. I’ve started owning the fact that my weight is partially not my fault. I’m not going to sit here and tell you I eat a lettuce leaf smoothie everyday, because I don’t. But what I do know is that exercise and the things I eat aren’t as simple as ‘get up and move, whilst digesting a tiny salad’. My body is in a constant state of fat storage behaviour because of my insulin resistant cells. My body’s cells are at war with my brain. It’s a difficult feeling to process when someone glances at your stomach and must think you are a lazy cow, when you aren’t choosing to be this way. 

Inflammation – so my body is also in a hyper alert inflamed state. So I’m more likely to suffer from IBS and stress. Apart from the physical side effects, the stress is on my cells which doesn’t help them when they’re already not functioning the way they need to be. Fun! Which is why, when I’m told to ‘relax’ I find it hard not to implode there and then. 

Hirsutism – that means hairy. I have hair growing everywhere on my body. Everyone does. But mine is thicker, darker and not bloody wanted. It makes me feel unattractive, self-conscious and it’s the hardest outward effect of this condition that I deal with. At times it stops me being loving with my husband. I feel like a man and it’s very difficult to live with. I often try to turn a situation around when you say ‘you suffer’ because more often than not, if you can find a way to come to terms with something, you can say you ‘live’ with something and in a way it stops controlling you and your quality of life. But for me, living in this hairy body is disgusting and I suffer its physical and mental effects everyday. It’s a physical reminder that I’m different. There have been a lot of times where I’m talking to someone and they’ll notice my face is different, and it’s unfortunate that I see their eyes move from my eyes to my chin. It’s not their fault, 

Infertility- I’m going to do another blog shortly on what PCOS has meant for me and my fertility journey (see journey, not struggle) because it’s just huge. Look out for it soon. But let’s just say, it’s fucking hard! Capital F!

Ance – I had horrific spots at school, I was bullied badly over this, even by ‘friends’ and at the time it was believed to be part of puberty. But I believe that as my puberty never really began properly because of the jumble of hormones my body was coping with vs the normal puberty struggles, I had spots competing in the hormone olympics. I’ll have the occasional pimple now and again, but nothing like back then. 

Hair loss – oh yes,how can I lose hair on my head if it’s everywhere else on my body. Don’t even start! My cousin first noticed some of the hair at the back of my head was shorter than the rest back in 2011. We blamed the amount of times I had bleached my hair and as it was at the back it didn’t bother me. A few years ago I started reading about hair loss and PCOS. It causes bald spots and thinning of the hair. Now my hair was so thick and curly when I was young that it regularly became knotty and matted. Nowadays, I estimate I’ve lost 50% of my hair due to thinning and the short bit at the back is still there. As a girl who suffers with her weight and facial appearance, my hair is my security blanket. Another physical reminder, that not all is as it should or indeed could be. 

Insomnia – well this one shocked me, it goes hand in hand with the theory of people living with PCOS having no energy. I’ve had insomnia since I started at secondary school. I would regularly not sleep or manage a few hours a night. Ultimately this came down to the stress I was experiencing at school but it also turns out to be a major symptom of the condition. It is said to go hand in hand with anxiety. It wasn’t until Mr W and I bought this house that I found myself sleeping better and permitting myself the time to nap if I needed it. I started listening to my body when it needed sleep. Before that I would muddle on through and had learned that being tired was just a natural thing that everyone felt. WRONG! PCOS also drains your energy from your body, so no matter if you’ve had no sleep, 3/5/10/14 hours sleep, you will, or at least I do, feel tired. The last couple of years have been better, and it’s only when I’ve had a severe anxiety attack, that I find I can’t sleep. But as I become more accustomed to what’s going on and recognising the signs, I can calmly go about my day knowing it won’t last forever. 

So there you have it, a day in the life of me! A lot of how I feel about the above is determined by my mental state. It’s my anxiety levels that will control my mental health. And a lot of the symptoms will cause me to feel anxious and my anxiousness will cause my internal symptoms to flare up and back to the beginning we go. So yes, I’m living within a vicious circle BUT somehow knowing there isn’t a cure but it can be managed makes me realise that there’s only so much I can do. 

Over the next two or three blogs I’ll be detailing my struggles with fertility, the NHS help I’ve gotten so far and the steps I’m taking to make my condition more manageable and in turn make my life just that bit better. 

I want to say now, that I have an amazing husband, beautiful friends and family, most of whom have not made me feel like a freak in any way nor stopped me talking when I’ve discovered new things about this condition. The wonderful power of research and owning your condition means you can take control and I believe that’s the first step on a very difficult and winding road. You are not alone.