Regaining fertility: reflections one year on

This time last year, I peed on a stick for what felt like the millionth time in my life. My 30th birthday had recently passed, and I felt immense pressure from the ticking time bomb that was my ovaries. I had been taking ovulation tests on a regular basis for several years, after over a decade of hormone dysfunction and severe issues with my menstrual cycle. I say “regular basis” rather than “monthly basis”, because my cycles were so utterly f*cked that if by some miracle my fertility returned, there would be no way of knowing when I might ovulate.

For most women, ovulation happens around day 14 of their cycle. But having had severe hormone issues for most of my adult life, I did not have even remotely regular periods. So every now and then I would pee on a stick on the off-chance it might show that I had ovulated. Sometimes I would get a bit full-on and test every day for a few weeks; other times I would give up altogether for a while.

There was a very big part of me that thought I would probably never regain fertility. I say “regain”, because I was fairly sure I had once been fertile. Of course when I was a teenager I wasn’t exactly worried about ovulation (I’m not sure I even knew what ovulation was back then), so I didn’t make a habit of peeing on sticks. But I had normal periods for several years before all hell broke loose, so I assumed that I was once fertile.

But those days were a long, long time ago, and my body had been through so much since then. Hormone tests (which I had to pay for via a private endocrinologist because the NHS would not explore it…. that’s a whole other rant for a different day) showed that, at the age of 26, I had the oestrogen levels of a post-menopausal woman. I was effectively in the menopause in my 20s and no-one knew why, nor was anyone willing to help me find out why. Of course my hormone issues were not occuring in isolation; I had tons of other health issues that were “unexplained” and I can’t help but wonder if I were an otherwise healthy woman, maybe the NHS would have been more willing to help me get to the bottom of it. But it was very clear by the behaviour of most of the medical professionals I saw that I had long been labelled as a “difficult case”, and that my hormone issues were just another thing to be added to the long list of “weird stuff that you say is happening but we’re not sure if we believe you so we’ll just ignore you and hope you go away”.

Then there were the million ovulation sticks that all gave me a big fat “no”, again and again and again. It was a weird, paradoxical cycle of being convinced that I was always going to be infertile – followed by random glimmers of hope that I might be wrong (after all, no-one had any idea why I was infertile) – taking the test – the crushing disappointment as I yet again saw one, not two lines – followed by hopelessness and feeling convinced that this would be my life forever. Every time I peed on one of those sticks it felt like I was self-electing to torture myself, because obviously it’s going to be negative and how foolish I would be to believe otherwise. And yet, underneath that self-protective voice in my head there was the ever-present nagging hope that this time, it might be different. If no-one knows why you are infertile, and therefore by default no-one can tell you whether your fertility is ever likely to return, then there is no closure. And so I continued to test.

So this time one year ago, I was peeing on the stick with the usual feelings of simultaneous hopefulness and hopelessness. I had no reason to believe it would be positive, but as always, there was the possibility that it could be positive. And this time, it was. This time, there were two lines. I read the instructions just to be sure. After all, it had been years since I had read the instructions. All the information I had ever needed to know (one line = no) was forever etched into my brain. So maybe two lines didn’t actually mean yes. I did not want to even contemplate the possibility that this was really positive without double- and triple-checking. Then I thought that I should really take a second test. Because how crushing it would be if it were a mistake and after all these years of negatives this was in fact a false positive. So I took the second test. There were two lines.

I took a photo of it, which sounds a bit weird. On reflection, I think the reason I took a photo was because I still couldn’t let myself completely believe that it was true, and in the case that I later discovered I hadn’t actually ovulated, I wanted proof that I hadn’t gone mad and imagined those two lines. I think that goes some way to highlighting the extent to which years of unexplained infertility (and maltreatment from various medical professionals) had messed with my head.

That day marked the beginning of a very different life. I have ovulated every single month in the last year, confirmed by the at-home ovulation sticks, blood tests, and tracking of my basal body temperature (a metric that can be used for natural fertility awareness and clearly shows if and when you have ovulated). So I guess that means I am no longer infertile, at least from an ovulation perspective. That is pretty exciting, but the experience has also been a bit anti-climactic.

Firstly, it felt like no-one else appreciated the magnitude of what was happening. I had ovulated for the first time in 16 years. No-one had any idea why I wasn’t ovulating, what was wrong with my hormone function, or if it would ever self-regulate. So to me, the fact that it had switched back on after all these years was nothing short of a miracle. If this didn’t deserve fanfares and party poppers, then I don’t know what would. But alas, life goes on and I guess the fact that I had always just “got on with it” and not really spoken about the huge psychological burden of years of unexplained infertility meant that I couldn’t expect anyone to realise what a big deal this was.

Secondly, it is all a bit depressing because I am still experiencing substantial health issues. So while technically, physiologically, there is every reason to believe that my partner and I could have children if we wanted, in reality, we still can’t. Life is still an enormous struggle. I struggle to work; he struggles to balance work while also caring for me on the really bad days; we struggle financially because of the costs of chronic illness; we struggle to keep up with the jobs around the house because we have so few days when I am well enough to do them; we struggle emotionally. If we added a child to the mix life would be very, very difficult and I do not want to raise a child in those circumstances. I sure do hope that one day I regain full health so that we can have a family of our own. The experiences we have been through together have made us incredibly strong as a couple. We each have moments when we fall apart, and moments when we have the strength of steel. We prop each other up and that, I believe, would make us fantastic parents. Nonetheless, for now, I am no longer infertile, but I still cannot have children.

On the plus side, even if we cannot have children, regaining fertility is still something that I celebrate often. Sometimes when I sit and reflect on where I have come from, it is actually quite overwhelming. All those years of unexplained infertility that nobody could help me with, which I always somehow just accepted as a part of my life and never really spoke about. I used to feel that my body was failing at its fundamental job of being a woman. That was a huge burden to have carried for all of those years, and now, that burden has lifted. I still take those ovulation tests every month, because ovulating is something so, so precious to me that feels almost sacred. Every month when I see those two lines I feel like a child at Christmas; it never gets boring. Every time, I run to my partner with excitement that look, I have ovulated again! Every time I feel so much gratitude and am deeply in awe of my body. And that is something to celebrate.

Relationships, love and infertility

This feels like an oddly personal topic to be writing about on a public blog, especially for me; a private, reserved, keep-myself-to-myself kind of person. But as I’m getting older, infertility is creeping up my list of things I need to be worried about. For me, fertility is a multi-faceted source of conern.

A little under a year ago I was diagnosed with Polycystic Ovarian Syndrome, or PCOS. Women with PCOS either don’t ovulate at all, or ovulate irregularly and infrequently. Without ovulation, there can be no conception. And so a common symptom of PCOS is infertility. In fact, many women aren’t diagnosed with PCOS until they attempt to conceive and find that they can’t. Luckily for most women with PCOS, there is a drug called Clomid or clomiphene, which can be used to stimulate ovulation and has a pretty good success rate. When Clomid is unsuccessful, IVF is usually the next option.

For me, however, those options are pretty much void. Because my EBV symptoms are so closely tied to my hormones, I currently take bioidentical oestrogen. My own oestrogen levels are excessively low due to PCOS, and when my oestrogen levels are lower, I get sicker. So I supplement with oestrogen and I feel somewhat better. I’m still trying to get my head around this relationship. It seems like friggin’ sod’s law that I would have chronic EBV which is activated when my oestrogen is low, AND PCOS which means my oestrogen is chronically low. I often think about this. I believe that a healthy body is a healthy body, and an unhealthy body is an unhealthy body. I just don’t think that diseases can be independent of each other, and I wonder if my hormones and therefore my PCOS, would improve or even resolve if my body could effectively deal with the EBV. Whether or not I will ever find out the answer to that question, I don’t know.

The catch-22 is that fertility drugs, including Clomid and those used for IVF, would require me to stop taking oestrogen. And that would mean being horrendously sick. It would mean giving up work, giving up my social life and hobbies, and spending the vast majority of my time in bed, horribly sick. This isn’t just a glass half-empty moment; I’ve been there before, with my own super-low levels of oestrogen and the EBV in pretty much a permanent state of activation, and it wasn’t pretty.

So, if at some point in the future I wish to have children, there’s a good chance I’d need to stop the oestrogen in order to do so, and I have to seriously question whether I want children that much or not. The other factor of course, is that raising children whilst chronically sick would be quite a challenge. I already struggle to keep up with the demands of life. A full-time job is extremely difficult at times, and if it weren’t for my current employer’s flexibility with working patterns and allowing me to work from home, I probably wouldn’t have a job at all. Household chores are also difficult at times, and I’m lucky to have a boyfriend who shows me endless amounts of patience, understanding that sometimes I can do more, and sometimes less. But add looking after children to that mix, and I honestly don’t think  I would manage.

So ultimately, I think my ability to have children rests entirely on finding some answers to EBV, and finding a way to improve my quality of life. I gave up on any realistic chances of finding a complete cure some time ago, but I do hope that I may be able to achieve a level of health that will allow me to conceive and raise children.

I’m 28 years old and, for the first time in my life, I have a man by my side who I think I’d quite like to be the father of my children. That is a wonderful thing, but it brings with it many emotions. Sadness and grief that I may never be able to fulfil that dream, disappointment that it might never be the happily ever after I dreamed of as a child, and worst of all, guilt that not only may I not be able to realise my own dreams, but that I may kill someone else’s dreams too.

For now, I am trying to live by the rules I always made for myself. Live for today, not tomorrow. Focus on what you can do, not on what you can’t do. And think about what you have got, not on what you haven’t.