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.

Popping the contraceptive pill like smarties

Anyone who follows scientific research or health-related news will probably have noticed the recent media frenzy about a study, published in JAMA Psychiatry, that has demonstrated a link between hormonal contraception and depression. You can read the paper here.

The study was the largest of its kind, following over 1 million Danish women aged 15-34 over a period of 13 years, and investigating contraceptive use, diagnoses of depression, and prescription of antidepressant medications. They demonstrated that all hormonal methods of contraception studied, including the combined contraceptive pill, progestin-only pill, contraceptive patch, vaginal ring, and intrauterine system, were associated with an increased likelihood of a subsequent diagnosis of depression, and use of antidepressants. The risk was even greater in adolescents.

Although I take an interest in most health-related research, my eyes are always drawn to anything related to a) hormones and b) mental health, due to my own personal experiences. I was first prescribed the contraceptive pill when I was around 13 years old, due to acne, and my miriad of health problems began not long after. I was severely depressed for most of my adolescence and early adulthood, and I always wondered if my contraceptive pill usage was a factor. I first became depressed around the time that I started taking the contraceptive pill, and this recent research suggests that could have been one of the factors that led to my mental health problems.

I’ve also always been convinced that the contraceptive pill was a huge contributory factor to my physical health problems. My recurring viral symptoms first started when my GP switched my contraceptive pill when I was around 15 years old, and they used to happen every single month when I had the pill-free week. The symptoms then completely went away for a couple of years when the pill was changed again, and throughout my life the severity of illness has been very clearly linked to hormonal changes.

I don’t think it’s sensible to blame anyone or anything for a health condition. It would be easy to slate the GP who prescribed a strong oral contraceptive to a 13 year old. It would be easy to see the pill as the devil, the good-for-nothing evil tablet that may have led me to a lifetime of ill health. Maybe, while we’re at it, I should blame myself for taking them? But ultimately, everyone on this planet is just doing the best they can, and both me and my GP obviously thought, rightly or wrongly, that it was the best option at the time.

Nonetheless, I do have concerns about attitudes towards the contraceptive pill, certainly in the UK. GPs seem to be quite keen to prescribe it to anyone who has a vagina. I don’t remember having to beg for the pill at that tender age of 13. In fact, I’m certain it wasn’t even my suggestion – I wouldn’t have known to ask for such a thing, and certainly not for acne. I subsequently spent the next 12 years or so of my life on the contraceptive pill, absolutely no questions asked, despite the fact that I was very sick for much of that time, with a clear link to my menstrual cycle. These days, I’m much more conscious of what I put into my body, and I honestly wouldn’t dream of touching a contraceptive pill anymore.

But yet, when it comes to contraception, it still feels like there is an underlying assumption that it is the woman’s problem. If a couple want to have sex but don’t want a baby, then surely it is a shared responsibility to achieve that? From my own experiences in my early 20s, I remember thinking that the pill was really the only choice. If I wanted a sexual relationship then I basically had to be on the pill. No-one seems to much like using condoms, and no way in hell was I getting a metal device shuffed up my hoo-ha. So the pill it was, and to be honest, I was quite happy with that. I don’t recall anyone ever explaining to me exactly how the pill works, or the potential risks associated with taking it (including as the research now suggests, an increased risk of depression).

In fact, I remember only a couple of years ago, realising via a book I was reading, that the pill completely suppresses your own hormonal cycle. One of its mechanisms of action is to suppress ovulation. No ovulation, no baby. But ovulation is the primary mechanism by which women make sex hormones (oestrogen & progesterone). So no ovulation also means no hormones (or at least, very low levels of hormones). I couldn’t believe it. For all those years, I had effectively been producing next to no hormones of my own, and was taking synthetic ones instead. How is that ok? How is it acceptable that I was doing that for my entire adolescence, without even knowing it? Perhaps I was just naive and stupid for not doing more research, for not knowing that that was what the pill was doing to me. But I sure as hell don’t think I am the only one to have taken those pills without fully understanding its effects.

I really think this reflects a broader issue in healthcare: patient choice. In research we have informed consent. That is to say, anyone taking part in research must provide their consent to take part, after having been provided with all the information they need to make an informed decision. A patient would not be expected to take part in research without knowing exactly what is expected of them, and potential benefits and risks. Why on earth, then, is this principle not applied to everyday healthcare? Surely a patient, as the end-user of the service, has a right to make a choice about whether or not to take a medication? And surely, that decision, should be informed? I don’t expect that my GP, all those years ago, had any inkling whatsoever that the contraceptive pill could have the potential to affect my health so badly, in the way that I believe it has. But there are clear risks associated with the pill, and I should have been provided with all the information necessary to make an informed decision. That is not to say that I would have made a different decision. I had acne, and that made me miserable, and there’s a chance I would still have taken those pills if I had known the potential risks of doing so. But at least I would have been making my own decision based on all the information available. Maybe, then, I would be able to look back on that decision without the pang of regret that I feel now. It is about time that patient-doctor relationships are seen as a two-way process of communication. Not an expert dominating their authority over a naive layman. After all, the patient is the expert of their own body, and surely that is important too?

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.

 

Where I’m at now

Read My story Part 1 and My story Part 2

8 months after receiving a diagnosis, I am doing much better. I have many days where I feel well, I have energy, and I can spend time doing the things I love, with the people I love.

But I am nowhere near a level of health that I am happy with. I still have many days of sickness. The last month has been particularly bad, for reasons I’m not entirely sure of – stress I’m sure is a factor, having just moved house and having some emotional stresses recently too.

My latest bloodwork showed that my oestrogen levels are within the normal range, although still on the low side. All my other hormones are now normal, presumably thanks to the medications I am on and the lifestyle/diet changes I have made.

My attention recently has moved towards other factors besides hormones. Ultimately I have a burning desire to understand WHY this has happened to me. Sure, my hormones have been all over the place and I know that this makes me very sick. But WHY does it make me sick? There are millions of women all over the world with PCOS, but most of them don’t have CAEBV. I believe that something has gone fundamentally wrong with my immune system. I believe that being on the contraceptive pill at such a young age may have had something to do with that; the undeniable link between my symptoms and contraceptive pill use in my teenage years points me in that direction. But I’m not on the pill now, and my hormones are (relatively) normal. So why do I still get sick?

In creating the ‘About ebv’ page for this blog, I have found some new research about CAEBV. I have yet to read them in full (academic publications about the immune system don’t exactly make for light reading…), but I am hoping to get a better understanding of what scientists DO know about CAEBV, and what treatments are being investigated. I know that my chances of receiving any of those treatments anytime soon are very slim, since most of them are only in the experimental stages. But knowing that there are people out there trying to make sense of this illness, and trying to find novel treatments to improve the quality of life of people like me, fills me with so much hope. I am so unbelievably grateful that I have a diagnosis, that I have the ability to follow and understand the science, that there are people out there trying to find answers, and, most importantly, that I have wonderful loved ones who are on this journey with me.

My story Part 2

Read ‘My story Part 1’

So I was taking Zoladex, the menopause-inducing drug, for 6 months. And during that time, something amazing happened. My symptoms went into complete remission. I didn’t have a single day of feeling unwell. In fact, I discovered a new level of ‘well’. I had oodles of energy, I started a bunch of new hobbies and I experienced what it is like to not have to wake up and contemplate how sick you feel today, but to just get up and go, knowing that you’re NOT sick.

Zoladex was a blessing and a curse. GNRH analogues are licenced for use up to 6 months but no more, because of a long list of risks (the big one being osteoporosis). So after 6 months it was stopped, and my cycles were instead suppressed through a double-hit of progestins: the progesterone-only pill (AKA the mini-pill), and the Mirena coil. But a couple of months after my last zoladex injection, I got sick, and this time it was much, much worse. I was permanently sick. There were no periods, no cycles, and no let-up from the symptoms, just a constant existence of sore throats, fevers, swollen glands and fatigue.

It was at this point that I really started to take some control of my knowledge. Working in academia, I used the sources I had available to investigate the scientific literature, to try and understand what my symptoms could be and why they were happening. Since I had got so much worse on high doses of progesterone, my reading led me to some research on progesterone intolerance. Specifically, women with PMS are thought to be intolerant to  progesterone, and oestrogen therapy can be really helpful for them. It didn’t fit my symptoms – I’d never really experienced PMS – but it still seemed like it might be relevant. I asked for my Mirena coil to be removed and stopped taking the mini-pill. I didn’t know what was happening in my body, but I did know that all this progesterone was doing me more harm than good.

I felt at this stage that I had exhausted all the help available from the NHS, and decided to seek help privately. After many weeks of researching, I found a privately practicing doctor who specialises in both women’s hormones and medically unexplained symptoms. At the end of 2015 I had my first appointment with her and instantly felt reassured by her extensive knowledge and understanding. She felt that my symptoms were likely to be viral in nature, and she explained how the immune system is differentially activated and suppressed by different female hormones.

In December 2015, 11 years after first becoming sick, I had a diagnosis. The psychological impact was HUGE. A diagnosis means you can research, you can make sense, you can explain. Prior to that, I felt like I was lost in the middle of the desert, with no idea how to even begin getting myself out.

I had high levels of antibodies for the Epstein-Barr virus, and the combination of antibodies showed that I had been infected with it a long time ago, and that it was reactivating. My bloodwork also suggested that I had PCOS – Polycystic Ovarian Syndrome. My oestrogen levels were that of a post-menopausal woman and my testosterone was high. I was started on a drug called Metformin which is used for diabetes, but is also given to women with PCOS since evidence suggests they are insulin-resistant. In addition, I was given bioidentical oestrogen to try and get my oestrogen levels within the normal range for someone of my age. The hope was that by balancing my hormones, my immune system would be able to take control.

A ‘where I’m at now’ post to follow…

 

My story Part 1

My health problems started when I was about 16. I had been on the contraceptive pill Dianette for a couple of years for acne. My skin cleared, but I became severely depressed. I now know that Dianette has been linked to depression, so who knows, maybe that was the cause, or at least a factor.

Anyway, a couple of years after being on Dianette my GP switched me to a different pill called Yasmin. And it was then that my life as I know it now began. For those who aren’t familiar with how the pill works, you take it for 3 weeks and then have 1 week off, during which time you have a bleed, akin to a menstrual period, although biologically speaking it’s actually not a period at all. My first ‘period’ on Yasmin I was sick. Really, really sick. A couple of days before my period began, I got a sore throat, fever, the glands in my neck swelled up like golf balls and I had indescribable fatigue. This got worse over a few days until I was bed-bound. After 5 or 6 days, as I began the next 3 weeks of contraceptive pills, it slowly dissipated and I felt fine again. The next month, the same thing happened again, and the next month, and the next month. It took about 6 cycles before I acknowledged I had a problem, and I needed to speak to a doctor. My GP told me it was nothing to do with my menstrual cycle or the pill – that was impossible. So I continued. In fact, this continued for several years. Every couple of months I’d be at the doctor’s office begging for them to do something, trying to convince them that this was related to my cycle. Looking back, I believe that that doctor really failed me. Every single month on the exact same day, I would get the exact same symptoms, that would last the same length of time. I KNEW this was linked to my cycle, but the doctor said it wasn’t, so that was that. I lived a very difficult life for those few years, in my first full-time job I got multiple warnings for excessive sick-leave. One week out of every four, I was completely bed-bound.

One day I saw a locum GP who suggested we change my contraceptive pill. Overnight, my sickness stopped. I had a normal ‘period’ (those pill-induced periods that aren’t actually periods, but no-one ever tells you that) every month, I wasn’t sick, I had energy, I was well. I was at University at the time, and life was pretty good. I put my previous years of sickness down to some kind of bad reaction to Yasmin, and assumed that was that.

And then one day, a couple of years later, it started to come back. Not as clear-cut this time, not a straightforward one week out of every four. I would still get sick with my periods, but not always as severely, and I started getting sick at other times too.The symptoms were always the same: a sore throat as bad as my childhood bouts of tonsillitis, hugely swollen glands, fever, and fatigue. The word ‘fatigue’ doesn’t really feel like an appropriate description. I always feel frustrated for people who have a diagnosis of Chronic Fatigue Syndrome, because I can only imagine they hate the word fatigue as much as I do. Fatigue is where you’ve done a lot of exercise and feel a bit worn out. Fatigue is when you wake up not quite feeling refreshed. You say ‘fatigue’ and you don’t picture a person who no longer has the energy to speak, who needs to lie down for an hour after making a trip to the bathroom, who as a fully-grown adult requires their mum to be their carer. The fatigue was absolutely unbearable.

These symptoms went on for a few more years, ebbing and flowing in severity, but always there, hiding in the background waiting to pounce at any moment. And then one day at one of my many GP appointments, I was advised to go the NHS walk-in centre in my town which specialises in contraceptive services. I think that in my GP’s exasperation, sending me elsewhere was really just a way to get rid of me; a way of dealing with a complicated case who was just too much trouble to spend time thinking about. But at that walk-in centre, I met the first health professional in all those years who understood. I still remember it now so clearly. She was a nurse. Her name was Penny. When I cried she put her arm around me. She listened to my whole story and wrote down notes on the only piece of paper she had to hand; a sick bag. She got me referred to a specialist GP, who then referred me to the hospital. I wrote her a letter to say thank you afterwards, and she sent me a card back, which I still have now in my drawer of keepsakes.

I was referred to a consultant gynaecologist, who was a lovely man. Once again, I told my story. When I’d finished he looked at me and said “How on earth have you coped with this?” I said “I haven’t”. He was baffled by my symptoms. His plan of action was a stab in the dark, but at least he was trying to help me. He wanted to use progestins (the artificial form of progesterone) to suppress my own cycle, hoping that with no periods I would have no sickness. But in order to get me there without causing me lots of unpredictable bleeding, and therefore unpredictable sickness, he decided to use a severe hormonal treatment called Zoladex. Zoladex is one of many drugs called GNRH analogues, which effectively put your body into a chemically-induced menopause. It is used mainly for women with breast cancer, because it completely shuts down your own production of oestrogen, which feeds many breast cancers. I was put on this drug for 6 months. When I tell people this, I often get raised eyebrows. It sounds kind of severe. It was severe, and it wasn’t a decision I took lightly, but I was sick, and I was desperate.

Read ‘My story Part 2’