HOW I FOUND OUT I HAD ENDOMETRIOSIS
I remember it so clearly. I had just been asked what seemed like hundreds of questions about my health from when I was born to the present: the pains I had, when they were, how often, where, what other symptoms from physical to emotional I had been going through. It was the first time anyone had asked my full health history. With each answer, the consultant and nurse kept nodding their heads and kept looking at each other, as if they knew something. After what seemed like an age, the consultant finally told me that he thought I had Endometriosis (aka ‘Endo’).
He said, “I am 99% sure and I would eat my hat if you don’t have it from what you have told me”.
In addition, he said he believed I’d had Endo since I started my period at the age of 13 years old from the sounds of the symptoms.
SO WHY WAS I RELIEVED?
As soon as he told me, I cried, and I couldn’t stop. I was shaking. The thing was, it wasn’t from fear, self-pity or any other predictable emotion when you are told you have a condition or disease. It was sheer relief that someone finally believed me.
“I hadn’t been going mad”.
There really was something wrong with me. It wasn’t all in my head, as I sometimes wondered. Years of emotional trauma from my intermittent every changing ill health finally came pouring out.
I remember sitting in my car afterwards, wishing that I had brought Pete, my husband, with me, as I so badly wanted him there to hold me. I hadn’t as I had thought what was the point. I’m rather independent and the amount of appointments I’d had recently with regards to my fertility, it didn’t seem like it was worth wasting his time – as they seemed endlessly like they wouldn’t get to the bottom of the problem. I remember feeling a lot of shame and fear that my body wasn’t working as it should, and suddenly understanding why we were struggling to get pregnant – that it was all my fault.
I hear you ask “why were you relieved at having been diagnosed with such an unpredictable and poorly understood disease?” Well, it’s a long story, so I suggest you get a cup of tea and sit comfortably.
MORE PEOPLE NEED TO KNOW ABOUT ENDOMETRIOSIS
I’m telling my story for a number of reasons, mainly because I want more awareness about this disease, so that more women are diagnosed with it far sooner. The other, is because it has completely turned my life around, as I come onto explain here and in Part II of this blog article. I am now thankful for what has happened. I am now in tune with my body as it has reignited my intuition and that ‘gut feeling’ to listen to my body.
I have learnt to “listen to my body’s whispers and not wait for it to scream”.
Over the past two years I have come to understand so much more about Endo:
- what it is / could be (as it is not fully understood in medical circles);
- the medical approach to Endo by using the hormone pill to manage pain or surgery to remove growths; and
- a more holistic approach through nourishing and cleansing your body in a variety of ways to reduce the symptoms – which is not very well known by sufferers.
So, through a holistic approach to healing, I have been able to feel and function like I have never done before! I am so passionate about it I felt the need to completely change my career to help other women so they don’t have to suffer and wait as long as I did. Which I have now done!
BE YOUR OWN DOCTOR
I can now see all the symptoms that I have experienced over time, from tonsillitis to pelvic pain to depression, were not individual issues but signs that my body was in a place of ‘dis-ease’. My immune system was compromised, the chronic stress I was putting myself under at work stopped me from sleeping and caused chronic fatigue, which now I understand was adrenal fatigue and is often a symptom of Endo.
There are so many little horror stories. For example, I remember when I went to a doctor when living in Oman to ask why I was bleeding for 2 months straight and then nothing for 2 months, then repeat – this went on for a year. All the ‘conventional tests’ said I was fine, except my cortisol was through the roof on several occasions – the sad thing was – she didn’t say I needed to do something about my stress levels or explain that my sex hormones are directly linked. Or that my period was my “report card” and I was being told – “you’re doing badly at the moment – slow down!”
“My body was screaming for me to listen – I just didn’t know I needed to listen. I just kept pushing myself to the limits”
The numerous doctors I have visited never had the time to really ask questions – and I always felt rushed. This is the way unfortunately GP’s in the NHS have to deal with here in the UK – limited to 5 minute appointments and no time to listen to patients – let alone the time to take a health history. This is why you need to be your own doctor – understand your own body, believe in it, listen and keep a health diary, then you can connect the dots with your doctor as you have kept notes. They will appreciate and more likely to believe you if you have a diary of your symptoms.
MY ENDO HEALTH HISTORY
My period started at 13. They were excruciatingly painful and seriously heavy – so much so I would faint and even be sick from the pain and had to miss school. My mother took me to the doctor and by 14 I was on the contraceptive pill. The doctors didn’t know what was causing it and regulating my period artificially was their answer. Unfortunately, this is still largely the case now 25 years on – though changes are happening fortunately – though very slowly.
I’ll be writing another blog post about the contraceptive pill and its misuse soon enough!
By 20 years old and in my second year at university, I started to have signs that my body wasn’t too well, but I didn’t listen. I was getting very nasty bouts of tonsillitis once a month for two weeks and being put on antibiotics each time – this went on for a year. No wonder I have had gut issues! In the end it was decided I should have my tonsils out – no one questioned why? In addition, I had terrible Irritable Bowel Syndrome (IBS) – some mornings I would wake up and look 7 months pregnant – weirdly it always happened after I had been working late and eating lots of toast and drinking lots of coffee!
My hard work paid off, despite playing pretty hard too. I finished my Marine Biology degree with a 1st, and then went to New Zealand to do work experience in some amazing places. Whilst I was there, a number of things happened to me that I found emotionally very difficult, particularly as I tend to bottle things up. I had a complicated unresolved relationship, a serious car crash and then my dear Granny passed away rather suddenly. In addition, I found I wasn’t very good at handling alcohol. It was if I had an allergic reaction to it – there were times I would be sick for 12-48 hours after only 1 glass / beer. Now I look back, I understand my body was overwhelmed both physically and emotionally and wasn’t functioning very well. One of the other things that started about this time, was my overreaction to stings and bites. Whenever I had a mosquito bite, my whole arm or leg would swell up and be painful and stay like that for up to a week. I didn’t really notice this at the time. It took another 15 years before I learnt I was having anaphylactic reactions – as I ended up in hospital after a bee sting in Canada – these are all signs that my immune system was not working properly – and are symptoms of Endo.
Soon after I returned from New Zealand, I was due to start a Masters. After a month back at university I found I was increasingly not well.
I had no energy, I was tired, could hardly get out of bed some days, couldn’t sleep, my muscles hurt, my head was fuzzy, I had no spatial awareness, I couldn’t speak articulately and I had severe memory loss.
I went to the doctors and was finally told after many tests (that I didn’t have other things), that I must have Chronic Fatigue Syndrome (CFS) or M.E. – they couldn’t work out what else it could be. This time coincided with me coming off the pill as I had heard that longer than 10 years would increase my chance of cancer. The painful periods came back – I was a bit stronger to be able to deal with them but they were still awful.
So, for the next 10-15 years at least, I battled with the knowledge I had CFS / M.E. After a year of having incredible cranial sacral therapy and lymphatic drainage massage – thanks to my amazing dedicated mother driving me across the country to see a unique M.E. specialist – I felt 90% better and went on to do a PhD in Marine Ecology. During this time, I had several fatigue flare ups typically around 3-4 months at a time and couldn’t work or study. I tried so many different alternative therapies from acupuncture to colonics when I could, dabbled in healthy eating though not consistently, and found yoga was my saviour. I did accept though that I had to be careful in not overdoing things.
During this time, after a few years of being off the contraceptive pill, I decided to give the non-hormonal coil a go. It was a disaster from the start to finish. It was excruciating being put in – I literally couldn’t move for a week afterwards – it should have been a red flag. Then after 2 years of pain (worse than previously) and a check-up, I was told it was lost inside me!! After a scan, they found it in one of my fallopian tubes and it would need to be surgically removed. I don’t much remember all the details of the operation, but I do remember what the gynaecologist told me after the surgery:
“on inspection of the inside and outside of your womb you had scar tissue all over the back of your womb and you must have either had a Sexually Transmitted Disease previously or Pelvic Inflammatory Disease but you are ok now as I have removed it”
I remember being shocked at her causal way of telling me. On reflection, it was obviously Endo scar tissue, but she was not an expert in Endo, as not all gynaecologists are – this is important for you to note. To make things worse, this information was on my medical records, and is what stopped the doctors from questioning if I had Endometriosis!
If you think you might have Endo, go to someone who knows their stuff and has a good reputation – not everybody can help you.
As I write this, I think how long-winded I am being in telling my story but all the signs were there. The chronic fatigue, which is a big one for Endo sufferers. Especially, as I didn’t have the typical CFS symptoms. Later in my 30’s, I found that I suffered from chronic stress and overworking myself (for two years I sustained a regular 80 hour week). Looking back it was painfully obvious I was suffering from Adrenal Fatigue. I had serious burn out by time I was 35. I was signed off work with depression and anxiety for 3 months the year I got engaged – so absolutely no reason to. It was my body that was just finally falling apart. I battled on, having found ways to heal from the depression and anxiety naturally – mainly due to rest, meditation, gardening and yoga. Another spring came, the same happened again – this time it was the first year of our marriage – again no reason to be mentally low. Then it happened a third summer in a row. It was then that I started to really listen – I knew that there was something seriously wrong – I just didn’t know what or who to ask.
And the doctors weren’t making the connection.
Since getting married we had been trying to get pregnant but it wasn’t working, so we were referred to the fertility clinic to find out why. I tried to tell them my history of symptoms and ask them if they were all linked but no one listened. I even asked if it could be Endometriosis and I was told categorically no by a nurse who wouldn’t even let me see the fertility doctor in person. My fertility journey is another story and I have had to make it Part II of my story – as you will need another cup of tea!
Looking back, I had all the symptoms, these were: painful periods, heavy bleeding, poor quality periods, intermittent times of painful sex, painful bowel movements, sharp stabbing pains in my bowels, chronic fatigue, depression, anxiety, chronic IBS and bloating, leg pains and cramps, brain fog, allergic reactions, inflammation and joint pain. The list goes on.
In the end, it was because my mother had heard an interview on Woman’s Hour about Endo during Endometriosis Awareness Week that she said I think you might have this – I think you should go see a specialist. It took a lot of pushing to get referred – even though it was a request for a private referral. Fortunately, I had private health insurance through work, as without, I would likely have had to wait a year or two due to waiting lists on the NHS. I had an endoscopy and excision surgery and the surgeon found I did have Endometriosis. It just shows – if you don’t push, no one else will.
So, if my story resonates with you in any way, go to the doctor, don’t wait.
I would love to hear from you in the comments below. Has this happened to you? The more we are open and talk, the more aware people will be of this disease, and won’t have to wait as long for a diagnosis. If it weren’t for the Radio 4 programme I might have never have requested a referral.
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