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