First thing first, I wanted to explain the images I’m using to start my more “serious” posts. They’re views (obviously) that I’ve taken whilst on holiday in some amazing places. During tough times, I look through them and they calm me down and make me think of some wonderful times. I hope they might be soothing for others too.
I realised today that I spent a lot of time in this post on Monday talking about the problems I’d been having this year and the personal struggles I’ve had with my health but paid no mention to what I finally concluded the cause to be after months and months of research and self-hypothesising. I’m still researching some far less intense ongoing symptoms but by and large the crux of what was wrong I now consider to be resolved.
I touched on the fact that, after I started having problems, I made it my mission to investigate all potential causes. So, so many times I thought I had it. I thought I’d found the reason for my peculiar and long list of symptoms. I’d make arrangements to get tested for whatever I’d diagnosed, seek advice from alternative practitioners about it or, preferably for me to save money and speed things along, take it upon myself to commence with a programme of treatments or alternative supplements that I’d researched online and had heard would make a significant difference to whatever the latest thing was that I thought I had. I realise at this point I sound like a hypochondriac. It must sound like all my problems could have been attributed to stress, anxiety and a paranoia stemming from my all consuming symptom-Googling and I’ll admit that it certainly didn’t help but it definitely, definitely wasn’t the root cause.
When I’m seeking to find answers to something I’m incessantly determined.
I hope that sentence doesn’t come across as arrogant. I’m not claiming my persistence to be a good quality. It makes me restless. I’m stubborn and determined and borderline obsessive. I’m incredibly impatient and, in particular when my health was poor, I couldn’t face the wait for medical investigations. I couldn’t cope with feeling how I did and so I took it upon myself to start treatments that I’d initiate myself. This of course had its pros and its cons.
In 2013 I ran the London Marathon. It had been a lifelong goal and was a truly wonderful experience.
As you can imagine, training was intense but I really got into the routine and loved the way that my fitness was improving. I also loved the weight that I lost and the tone that my body found. Once the Marathon was completed I carried on with the exercise regime and took it to another level, monitoring heavily what I ate and controlling my calorie intake. It wasn’t done healthily. I didn’t exactly eat the right things. I still ate the things I loved – crisps, chocolate, pizza, but I restricted my portions to meet a daily calorie goal that was probably not sufficient for my height.
Then at the beginning of 2015 my periods stopped (sorry to any male readers who may have stumbled across my blog!) The fact is, it didn’t bother me at first. I actually enjoyed not going through the hassle each month. If anything, I felt like I had more energy not going through the inconvenience of menstrual cramps. Plus, I felt great about myself given how slim I was and that I wasn’t getting the inevitable bloating that normally comes once a month. But a few months in and I started getting concerned about my fertility so I decided to get checked out.
This is where the very first of an ongoing stream of doctor’s appointments began. All the tests and scans came back fine, thank goodness, but by this point I was curious. I didn’t now like the concept of not menstruating particularly when there didn’t appear to be any sound reason for it. It was then that I reflected on the past few months of compulsive exercise and not eating properly.
I decided from there that I had to cut back on exercise (conversations with family, friends and exercise professionals all confirmed that I was probably doing too much) and that I also had to start eating better. The calorie counting went out the window and I upped my fruit and veg intake to a far more sensible level.
But from here something strange happened. Far from feeling a healthy glow from the improved way that I was now eating and drinking, I started to feel ill. I was often confused and disorientated, weak and tired and had consistent headaches and muscle cramps alongside a whole host of other symptoms like panic attacks, heart palpitations and hunger attacks. All I could think was that my body, having been deprived for so long must have gone into shock at the fact that I was now treating it properly once again.
I spent a long time looking back at the way I’d lived and wondered seriously if how I’d been behaving could, in fact, have been classed as some form of eating disorder. Sure, nothing as blatant or destructive as Anorexia or Bulimia but something a little more subtle. This is where I came across the term EDNOS (Eating Disorders Not Otherwise Specified).
This broad term seems to cover a range of disorders such as binge eating (which I’d also do in my own mild way – going crazy with food one evening, only to make up for it by barely eating at all the next day) and obsessively working out.
So why am I talking about this? I’m not claiming to have been as ill by any means as someone who was battling the hell of Anorexia or Bulimia. I’m not attention seeking and I am SO not wanting to big up what I went through to be a comparison to those who are truly struggling. I don’t want to put forward myself as a drama queen. But, when I was looking into over-exercising and binging, I learnt A LOT about what resources are out there, what motivates a disorder to manifest itself in the first place and ways to go about taking the first steps towards a self help strategy. I also stumbled across a number of blogs and writings from some incredibly inspirational individuals out there and at some point, when I talk more about how I looked into the possibility of me struggling with a minor eating disorder, I’ll discuss all of these things and hope that somehow in some small way, the information I uncovered might just help someone else out there in cyberspace.
Jumping forward a few (ok, a lot!) of other self-diagnoses, I came to the realisation through hours and hours of research and from reading literally hundreds of articles from women going through the same turmoil as myself that my copper coil could be to blame. For those of you who may not know a copper coil (or IUD) is a non-hormonal contraceptive device that gets implanted into the uterus (again, sorry gentleman!) and can successfully be left in place for up to 10 years. Mine was in for 6 and for the first 4 or so years I, like so many women, had no problems whatsoever with the device and I can’t stress this enough: for many, many women the copper and indeed the hormonal (Mirena) IUD is a fantastic and effective contraceptive option that poses them no problems at all.
(I’ve “borrowed” an image from a post that someone left in this online forum to illustrate exactly what an IU. I want to make sure I credit them to ensure I’m not stealing it – I hope they don’t mind!)
For me however, and seemingly for many others it can, eventually cause problems. I came across literally hundreds of other females who had posted in online forums looking for help regarding their coil and they were all discussing the exact same symptoms that I listed in Monday’s post. I felt like I could’ve written their stories myself. It was incredible to finally not feel alone but yet at the same time I felt so sad that we were all going through the same issues that really were truly debilitating. I know that must sound over-emotional and hyped up but honestly, at the time when you’re going through what I and so many others were, it is, in every way you can think of, soul destroying. You are a blank space, numb, and can barely register. A woman in one of the forums I discovered wrote;
“i Asked God to save me, cos many times, i did not think i would survive the day”
I think that, given the effect it has had on my life, the topic of contraceptive IUD’s is one that I will touch upon again and again in my blog. One of these days I will be sure to post a list of every single article and forum that I stumbled upon in my quest to find answers in the hopes that others will find support from them too.
When I was experiencing these peculiar symptoms I felt so indescribably alone. It’s impossible to explain how bad you feel on the worst days and doctors are entirely adamant that the copper coil alone simply cannot be the cause of the unexplained symptoms. I of course cannot say if this is right or wrong but having your theory so firmly dismissed by the whole of the medical industry when you truly feel in yourself that this unarguably must be the cause is massively draining. That feeling of being alone can never completely go away but having the support from the strangers in these forums and their stories helps take some of the ache away and certainly helped me in a way that the authors can never truly know. I will be forever grateful to them.
That’s a lot of text about one tiny contraceptive device but somehow I don’t feel it does justice to how I felt and what I went through. In an effort to capture some of the key things I learnt from the experience I’m going to summarise a few key points and hope that, somehow, even if just for one woman out there it may help her feel just the tiniest bit less alone.
Health takeaways based on what I learnt after researching copper IUD’s;
1)Whether or not there is any medical authority to it, there are literally hundreds of females out there struggling with similar symptoms ranging from spaced out mind “fogginess” to random abdominal pain and indigestion. They all have an IUD.
2)Some theories that have been put forward in an attempt to connect the IUD to the symptoms include;
Copper toxicity (most likely in individuals who are already copper heavy or estrogen dominant – there have been some studies published out there linking the two. The pre existing copper condition could even originate from diet or through drinking water found in copper pipes. I’m not trying to scaremonger here, I think copper toxity from food and water alone is very, very unlikely)
3)The positioning of the device being ever so slightly displaced can cause inflammation or general irritation. This in itself can lead to discomfort and the “foggy head”
4)Some suspect that the body can reject this “foreign device” after a certain amount of time subsequently affecting hormones and monthly cycles.
5)It is my belief that in my case, for some reason which I am yet to understand, I came to be more sensitive to copper after losing weight which then led to a string of horrible symptoms
6)Before “blaming” the IUD for the host of weird symptoms being experienced, it’s truly worth asking your doctor to test you thoroughly for other potential endocrine symptoms, nutritional deficiencies, allergies and infections – specifically Vitamin B12, Vitamin D, Thyroid function and Electrolyte levels as these could all be logical causes. I wouldn’t however rule out entirely the copper coil being in some way a catalyst to any of these conditions.
7)Doctors may not be very sympathetic to your symptoms if you attribute it solely to your IUD. You may be presented with a whole range of other diagnoses ranging from Chronic Fatigue Syndrome to Depression. If, like I did, you keep having to re-visit the doctor to discuss your symptoms again and again you may find it useful to write things down. I once sent a 2 page A4 document to a consultant prior to meeting with her and was actually pleasantly surprised to hear her say that she wished everyone would do that prior to their appointment!
8)Doctors are often reluctant to take the IUD out. Please don’t give up if you feel that it isn’t right for you. If you give it more time and then decide later that you still want it out or your symptoms have worsened you may find that you have a very long wait to get it taken out if your doctor is unable to straight away should your strings have curled or the device have moved as you’ll need to be referred elsewhere.
9)The thought of getting it removed is worse than the actual procedure itself. Take it from me, it took 3 attempts, a local anaesthetic and a whole range of gynacalogical tools but it was so worth it in the end with minimal pain in the days following the removal.
10)The symptoms that these women all appear to be experiencing also seem to mimic that of Coeliac disease. I’d love to see further research into the link between copper in the body and the development of this autoimmune disease, if there is one.
11)Once the device is out, the likelihood is you will immediately feel better but don’t rush your recovery. Also don’t panic in advance about whether or not you will feel better. I’m yet to read of a woman who didn’t feel better and the stress of worrying about this will only make you feel worse. Some women didn’t feel better straight after removal and for some it was a gradual process. You can still experience symptoms weeks or months afterwards like I did (still am) and the general concensus is that this is caused by what people refer to as a “copper detox”. This can be helped by occasional infra red sauna sessions (no more than 20 mins at a time) and some gentle exercise and fresh air.
12)UNDER NO CIRCUMSTANCES should you try to remove the device yourself no matter what you may read online. You risk dislodging it and making your symptoms worse or worse still doing yourself some serious damage!
13)Some people find that zinc supplements can help rid the body of excess copper but be careful as too much zinc can cause problems of its own. I took 2.5ml of this a day for a week prior to removal and for 3 days afterwards. You can get a 2 in 1 zinc supplement and deficiency test which is an easy way to judge if you’re zinc insufficient (supposedly this can happen when copper levels are high). You can purchase it from any good health store. I also used and continue to use sublingual Vitamin B12 and a Magnesium body spray. It seems to help.
14)When I first suspected problems with my coil, I used this to ascertain whether or not I could have a lot of copper in my body (I suspected it possible as always had a strong metallic smell “down there” but was amazed when the test confirmed my copper level as high). It is what prompted me to start researching the IUD further.
15)Once the coil is removed you can become pregnant instantly. If you’re going on the pill it is therefore advisable to commence with the tablets at least a week prior to it being taken out.
16)If you’re going through this, YOU ARE NOT GOING CRAZY. If it’s due to your IUD you do not have a life threatening condition, you WILL get better, you ARE strong enough to get through and most vitally important of all YOU ARE NOT ALONE.
Quick caveat here: please, please note I AM NOT A DOCTOR. None of the above comments are based on sound medical opinion they are just based on my own personal experience. I hope that they help and I hope anyone reading this who has any questions will get in touch for some support but my comments in no way replace the absolute necessity of getting fully checked out by a doctor and/or specialist.