I have always known that I have fertility issues. Being told at 17 that I would, more than likely, struggle to conceive, felt weird to me at the time. I never paused for thought when I was told. I was offered further investigations to confirm but at 17 I had spent enough time having tests and procedures done in the previous 6 months that led to this moment that I just wanted to get on with living my teenage life.
At 17 I was diagnosed with PCOS (polycystic ovarian syndrome), the diagnosis meant nothing to me at that point, it was simply the thing I could blame for missing too many of my sixth form school days, nights out missed, or being drove home because I could not leave the toilet. I never realised it would also be the beginning of years and years of illness, pain, exploratory procedures and surgeries.
Dreaming of settling down and having babies was not how I spent my formative years, and I can honestly say during my twenties I was too busy having fun. Yet, the thought that I would likely not be able to conceive was always there in the back of my mind, stealing any thoughts that I would dare to think that I may want children, niggling at that start of any new relationship, and giving me a nonchalant devil may care attitude towards having children, at least outwardly.
Just as food for thought………I truly believe that sex education within schools needs a complete overhaul. We should all be taught about our bodies and the changes they go through at puberty, in all its guts and glory not watered down. Periods need to be spoken about openly and in detail. Fertility needs to be discussed so that girls and boys can be educated, and make informed choices about their lives. There will be girls suffering from alarmingly young ages that will not be able to advocate for themselves, simply because they do not have the information, or the people around them to help.
Throughout all the years the overriding word, thought or feeling that would never leave was family. Family is hugely important to me, and whilst I was sure being part of my own family would be in my future, I really had no idea what form this would take.
2014, I met Mr P. Quickly we knew we were in this for the long haul. In the early days I had explained my fertility, and as he does with everything in life, Mr P took it in his stride. I knew I had hit the jackpot with Mr P, he really did make me a better version of myself, and if it was at all possible, he made me calmer. Suddenly what our family may look like became important to me. When you meet a good person, you want to share everything with them, and I knew Mr P would make such a good Dad.
By 2016 we decided to try for a baby. We had no idea how this would go, because I had never had specific fertility tests we were going in blind. Throughout the years I had further exploratory procedures and each time they had come to the same conclusion, so we were presuming that it wasn’t going to happen but hopeful as truly we didn’t really know. My health overall had been better, which for me was no major flare ups that had left me incapacitated but still meant years of period issues, stomach problems and ongoing issues from polycystic ovaries.
After 6 months of negative pregnancy tests and sporadic cycles we decided to go to the GP to seek a referral to a fertility clinic – it was advised due to my age and history not to wait longer than 6 months before seeking a referral. At this point I was 35.
It was perhaps a strange coincidence but between gaining the referral and our first appointment at the fertility clinic my health had started to decline; my periods were becoming worse than ever, incredibly heavy but short, excruciatingly painful and were beginning to mean that I was taking time away from work and life.
I entered our fertility journey and attending our fertility clinic naively. I wanted answers, to know what was wrong, why was everything getting worse, and I wanted a solution. We were both coming round to the idea that conceiving might not happen, and we both just wanted me to be well, it was beginning to affect every area of our life. I realise now that I was looking for answers in the wrong place. Fertility clinics, or certainly the one I visited, have one end goal, getting you pregnant; because let’s face it, that’s what everybody is there for. I found it frustrating that when I was asking for answers and solutions to those answers, the only one that was being offered to me was getting pregnant. I couldn’t understand why I couldn’t make my health and body a priority first.
We began with the usual series of tests, bloods, scans, which must be said are mainly for the female to be poked and prodded, but Mr P did get to make a visit to the lovely sample room. All of these came back good, I had a great egg reserve which can often be the case with Polycystic ovaries as we do not ovulate regularly. There were no answers for why we could not get pregnant, the fertility clinic was also not fully convinced that my ovaries were Polycystic. This was the only place that ever scanned me and not confirmed Polycystic ovaries. I was confused, dejected and was running out of hope. We were prescribed clomid for 3 months, in the first cycle I would be scanned around the 14th day of my cycle to confirm ovulation had taken place. When the 14th day came around and I had a further visit with wanda (if you know you know), the scan confirmed that I had indeed ovulated. We were now in official unexplained infertility territory.
After this point no further tests were to be done, none of my other symptoms were considered, painful periods, erratic and painful bowel habits, pain around ovaries at different times throughout the month. The clinic would have progressed with offering us IVF on the NHS if it wasn’t for my BMI, which just over 30 was out of criteria for our CCG at that time. I was advised that spinning classes might help.
Let me just take a moment, I am not disagreeing that exercise is crucial to a healthy balanced lifestyle but if you know anything about PCOS losing weight is incredibly difficult, sufferers are often insulin resistant, and a whole lifestyle needs to be looked at to hope for any of success. When it comes to exercise low impact low stress exercise is the most successful, like walking, swimming, yoga and Pilates. I can’t even begin here to talk about the flawed system that is the NHS BMI system, how it is unfair and inaccurate on so many levels, leaving many people, not just in the fertility sector, mistreated and mismanaged. If you would like to know more I found this government report released last year very interesting https://committees.parliament.uk/committee/328/women-and-equalities-committee/news/153711/government-approach-to-negative-body-image-dangerous/
Now my BMI was the reason we may not be starting fertility treatment, and maybe the reason we would not be able to start a family. We stepped away from fertility treatment. When they were deeming me unfit for fertility treatment on the NHS, why would paying for it be any better? Although I will add that they would have happily provided us with private treatment. I was devastated, I couldn’t see any solutions and my health was not getting any better.
We didn’t stop trying for a baby. We concentrated on our health, tracked ovulation, I gave up everything at one point or another, alcohol, gluten, sugar and dairy. I took supplements specific to PCOS including inositol to try and get my hormones and insulin under control and hopefully lose weight. By 2019 we still had not conceived and again my health was deteriorating.
I have been dealing with GP’s and consultants for over 24 years and it never gets any easier. No matter how informed I feel, how clear I am about my body and what is happening, it remains difficult to advocate for yourself and be assertive without screaming in their face. Yet another opportunity to be labelled an unreasonable female. Even with my medical history being what it was, the time, the male GP was more than happy to refer me to a gynaecologist, and get me out of his office, but the referral stated ‘painful periods’. There is nothing more demeaning or shaming than a man making a woman’s problems small or lesser than. We must continue to push, to ask the questions and get the help we need.
I had my referral and quickly I had my appointment through, 2 months from the GP appointment, I was pleased and ready to go again. Then I had the worst period to date, I couldn’t stand, the sweat was pouring from me, I was in the toilets of my work, taking my clothes off, not able to leave the toilet but also throwing up. This time it culminated in a visit to A&E, a long night and scans that confirmed I had a chocolate cyst – (an ovarian cyst that has filled with blood) on my right ovary. After a discussion with the A&E consultant it was decided I would wait to see the gynaecologist I had been referred to before a treatment plan was put in place, the appointment was less than a month away and there was no immediate threat to health.
The day came where I had my appointment, little did I know that this appointment was about to change everything. When I met the consultant, I can’t say I was hit by her warmth, she was direct, to the point, matter of fact and she was my gynaecological angel. During the appointment I was listened to, nothing I said was dismissed and when I was interrupted it was to say, ‘let’s just get you booked in for a laparoscopy, it will be the only way for us to truly know what’s going on’. My shoulders, that had been around my ears before going into the appointment, dropped and I took some deep breaths, I had been heard. She suspected that my ovaries were polycystic and would like to complete ovarian drilling if this was the case, there was also the suspicion that there would be evidence of endometriosis and if so, if she could, she would remove it there and then.
It sounds peculiar to say that I was excited for an operation, even though there was a natural fear that I was going to be having surgery under general anaesthetic, my anxiety was in overdrive about all the things that could go wrong, the overriding feeling was of excitement and hope. I had never lost hope over the years, with each new consultant, with each new exploration, that answers may be found and therefore we may find solutions. Yet never had I felt listened to, and dare I say believed, my hope was at an all-time high.
The day of the surgery passed in a blur of surgical stockings, anaesthetic and painkillers. The outcome was I had stage 3 endometriosis, one decent sized endometrioma (the chocolate cyst) and my ovaries were still showing the thick outer layer synonymous with PCOS. The endometrial adhesions were removed, as was the endometrioma and my ovaries were drilled to remove the outer layer and hopefully get me ovulating regularly. I had a check-up with the consultant a week after my surgery, wound sites were recovering well, she was delighted with how the surgery went and told me to go away and make babies. She fully expected us to be pregnant within six months. I laughed a little at hearing this, not believing a word. I had the surgery in January 2020. As this point we were not thinking about babies or getting pregnant, all our thoughts were consumed by health and getting back to life.
After the surgery I was relieved, there was answers and solutions. They may not be solutions that would last forever, the likelihood with endometriosis is that it will return but for now something had been done. I had no idea how I was going to feel the next day, the next month or year, but that hope became realisation that I may feel well for some time.
After the initial recovery time, I had been feeling good. My first post-surgery period came at the beginning of March, and it passed without significance which is the most significant thing that it could have done. Could I hope for more months like this?
Then mid-March something happened to all of us, a pandemic was spreading across the world and the UK was put into lockdown. With the worries about our health as a nation, our livelihoods and life as we had known it, the beginning of the year paled in comparison. Once the shock of what was happening, started turning into a new reality; this was going to be our way of living for some time, we threw ourselves into making the most of the time, as much as we could. We were both lucky enough that our jobs were going to continue working from home, we were not working the same hours that we had been working for far too many years so the one upside to this lockdown for us was time.
There was time for us to go on lovely daily walks (just the one allowed mind you), we were cooking delicious food every day at home, we were getting some of those niggly jobs done at home, we watched too many boxsets, we zoom quizzed and we enjoyed the beautiful weather that Mother Nature had blessed us with (I truly believe this was a thank you from the world for stopping for a wee bit). I know that lockdown was incredibly hard for a lot of people, and ours wasn’t all light but we were fortunate enough that a little joy and being thankful for what we did have was part of our lockdown experience.
Life, as it did for so many others, carried on, on repeat. That was until a sunny Wednesday in June. I had been feeling off for a few days, my mum had seen me at an outdoor dropping of presents for my niece and had told me that I looked wabbit (an old Scottish term for looking exhausted and unhealthy). My period was due, so the fear was growing that I was on the slippery slope of becoming unwell again. On that Wednesday I just could not shake the feeling of illness; the tiredness and nausea was all consuming. Mr P wasn’t home, he had been called to work. I sat in the garden for half an hour, trying to take in deep breaths of fresh air, sipping on water, willing myself to feel better. Sitting there trying to listen to my body I realised that my boobs were feeling achy and tender which was a new symptom for me at this time of the month.
I had one pregnancy test left upstairs. I have had a stash of pregnancy tests for years, firstly, because we had been trying for baby for nearly four years by this point, secondly every time I had a flare up, I would do a pregnancy test to confirm to the doctors that I was not pregnant. I have never taken a pregnancy test thinking or hoping that it would be positive. Like I had done so many times before I decided to pop upstairs and do the test.
If the appointment with the consultant was the day that changed everything, the next 3 minutes were the minutes that turned our world upside down. I took the test, placed it on the side of the bath as I had done so many times before. I was so used to taking these tests and expecting a negative result there was no impatient waiting, holding my breath or counting down the minutes. I washed and dried and my hands, turned around to pick up the stick, and there was the word on the digital screen…………PREGNANT. The world stopped moving around me, I put the toilet lid down and sat down, staring at the test, at that word. My eyes could not believe it, I couldn’t catch a breath and the panic levels started to set in. Panic about what, I wasn’t sure at this point, but it was there. And then the tears came.
I am sure I didn’t stop crying for an hour, I did move away from the toilet though. I moved onto the sofa in the library (the spare room where we keep all my books) where I sat staring out of the window, crying, looking at the test, which then made me cry more.
It dawned on me that I had no idea what to do next. Who do I tell? (It was at this point I should have told Mr P but I didn’t) When do they confirm that I am actually pregnant? A further dawning reminded me that we were in the middle of a pandemic; I had been hearing and watching on the news all the problems that maternity services were having, women not being seen for appointments, having to go to appointments alone, being told good or bad news whilst their partners waited on the car park. Panic was becoming the dominant feeling.
Being a practical and logical person, when something happens, I need to be doing, so I got on with doing. I called my GP surgery, but rather than state that I was pregnant, and I need to know the first steps, I blurted out ‘I have had a positive pregnancy test’. ‘Congratulations’ the receptionist smiled down the phone. The silence she received then prompted, ‘oh, it’s not congratulations? Are you ok?’ I quickly had to apologise, smile down the phone back at her and explain that I thought that I was in shock. It turns out you don’t see your GP for any pee in a pot pregnancy confirmation you go straight to phoning the midwifes. I asked the receptionist why nobody needed to check at this point to which she asked if I had done a test, well yes, and was it positive, well yes, well that’s it you’re pregnant.
I had no idea, and still don’t, if phoning the midwives was normal protocol or if this was due to the pandemic, but I have been given my orders so phoning the midwives it was. Again, I went with the I have had a positive pregnancy test rather then I am pregnant, the belief that this was happening had yet to set in. A quick conversation, mainly me asking if they did a check at this point, which the midwife went through the have you done a pregnancy test rigmarole again. That was it, I was recorded as pregnant and was now under maternity care. Important to note here that there was now two people in the world who knew that I was pregnant and neither of them was Mr P.
I can’t fully explain why Mr P was not my first phone call, all I have is this. I did not want to tell him over the phone, he was in a meeting that I did not want to interrupt. I phoned the GP and midwife first because the pandemic stories had spooked me, I had no idea what you did when you find out you are pregnant and if there was going to be any delay it was not going to be because I didn’t make a phone call. If this pregnancy was happening (which it was) I was going to do everything in my power to have the knowledge and tools to keep me and the baby healthy. I did message him to tell him to come straight as soon as he was able, he was due to do our weekly supermarket shop after the meeting. He knew I had been feeling unwell, so I made sure not to spook him too much but that just needed him home sooner rather than later.
I always dreamt that if we were lucky enough to get pregnant that I would try and tell Mr P in some lovely way, write a card, get a wee surprise with Daddy on it. Turns out you would need to have the ability to keep it secret for at least few days and that I am not that person. He walked in the door, I cried and threw the pregnancy test at him. He on the other hand was his wonderful, calm and collected self; after staring at the test for what felt like, to me, forever, I think he was trying to figure out what it was, he asked if it was true and then he held me, told me it was great, and everything was going to be wonderful.
And just like that, our lives were changed forever, our gynaecological angel was right, we were having a baby.
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