“But you don’t look sick” – Natalie’s Story

Name:

I’m Natalie, 29 and the owner of this blog page.

Your Invisible illness(es):

My invisible illnesses are Endometriosis (Endo), Fibromyalgia, Hypermobility & IBS

(This blog will focus predominantly on Endo)

Explain about your journey and how long a diagnosis took:

Like a lot of people with Endo, my diagnosis was not easy to come by – in fact, it took me over a decade and thousands of pounds to actually ever get a name, for the things my body was experiencing.

For as long as I can remember every pain I ever experienced was medically defined as normal, every blood test, ultrasound, and internal scan all deemed me to be medically fit with a fully functioning set of organs. On paper I was fit as a fiddle, but in reality, that is never how I felt. Before my teenage years hit, I suffered from horrendous lower stomach pains and even though once a month they would worsen as I didn’t actually start my period until I was 16 – my real journey never actually began until then.

I’ve always suffered from heavy periods, my mum did too and so for us that was “normal” – but when I began bleeding through clothes, screaming when I coughed and having pains that wouldn’t shift with paracetamol, I visited my GP. I’ll be the first to admit, a lot of this journey in the early years was done alone, behind closed doors. I was put on a contraceptive pill shortly after getting my first period, I was deemed unable to cope with period pains and told this would help. Over my late teens and early twenties, I was put on a whole variety of different contraceptive pills all in hope of easing the pains experienced, and to reduce the heavy bleeding – but sadly, nothing ever worked. I was subjected to embarrsement and shaming every time I tried to tell a doctor about my pains, they often repeatedly tested me for sexually transmitted diseases – consistently putting strain on the one faithful relationship I was in at the time. Other times I’d sit alone in the doctors and be told they thought I was experiencing ectopic pregnancies, and if the pregnancy test came back positive an ambulance would be called and I’d be rushed to hospital. Each time I sat alone with tears held back, praying that if there was a little being inside me that it was okay – every test came back negative and I’d be patted on the back and sent without pain relief home, like it was an accomplishment to not have an ectopic pregnancy and therefore I should just be getting on with it. At least, that’s how I felt.

A gynaecologist wasn’t mentioned until I was around 18/19 and after a set of scans, I was booked in for my first surgery aged 20. Again I was deemed fit and well and had the Mirena coil put in. Long story short, the Mirena coil was not my friend and after an awful 8 months with it, I gained three stone in weight and was depressed as anything. So, it was removed and I kind of gave up on my health, the Mirena Coil had been promised as my saviour and last resort.

I resigned myself to believe it had to be all in my head, every doctor and medical professional had either heavily suggested or outright said as much. Life in these days was controlled by anxiety, every day I’d be violently ill, all the weight I’d put on previously, I lost and then some without even trying. My periods would literally be like something in a horror film, but I thought that this was what every woman experienced; and I just go on with it. Fast forward five years, I was hiding the pain because I could cope with it, I’d mentally normalised my extreme periods – but they became further and further apart, I’d still have one each month but they’d tend to arrive a week or two later each month. Fertility then came to mind, what if something really wasn’t right? So back to the GP I went, this time with my now husband by my side and supporting every step of the way. Nearly everything I’ve experienced over recent years has initially been blamed on stress, my mum was terminally ill with cancer, I was planning a wedding in only 16 weeks … The GP rationalised that this was impacting my body. But even after the wedding, things didn’t settle down and I began taking more note of the pains, and how they existed outside of my period and only worsened throughout my cycle. I started doing my research, a lot of research, reading up and sure enough I found something called Endometriosis (my auntie had it, but I didn’t know what it was) – I ticked nearly every symptomatic box associated with Endometriosis and I knew in my heart of hearts this was the name of what I was experiencing.  My push for answers grew stronger, I pushed and I pushed and I pushed for answers, and after six – eight scans and internal examinations  (one month something would show up, the next it wouldn’t) I was declined any further scans under the NHS because “everything was normal”. I had no choice other than to go private.

When I met the private gynaecologist, I introduced myself and told him I had Endometriosis – he told me that was impossible for me to know… but I knew. After his own scans were conducted, he confirmed there was mass amounts of old blood surrounding my left ovary, surgery was needed, and I consented to the removal of my left ovary. When the surgery day arrived, I’d lost my mum only six days before and had her funeral to attend 48 hours after surgery – on reflection, it was quite possibly the worst occurrence of my life. I thought paying to go private meant I’d be treated better, but I was put out and come around in a full-blown panic attack. My husband was brought into theatre as nothing would calm me down, the surgeon then told me I had Endometriosis; he’d found it widespread in a lot of places and my bowel was attached to my womb, but he’d corrected this … and it was okay he’d gotten “rid of it all” (and did I want the mirena coil put back in – I hysterically screamed at him until he left the room). That was the first lie I faced, and on my follow up appointment I was hit by a whole host of factually incorrect information … but ultimately I was told to 1) have a hysterectomy, 2) Be induced into medical menopause, 3) have a baby or 4) repeat surgery every few years to “clean you up”. My fertility had never been tested, on the one hand he’d suggested children and on the other he’d suggested to tear out the very organs associated. At this point I was armed with facts, statistics and a whole host of passion – I fought to be heard, to challenge why I had pain in my diaphragm, what any of his options would actually mean for a woman in her twenties and that I wanted a referral to an endometriosis specialist. I was told endo on the diaphragm was impossible, and that the only specialist he’d refer me to was a menopause specialist … Despite me not going and refusing to be put into menopause.

Three days later, paying privately again, I was sat with an endometriosis specialist that I had found on Nancy’s Nook. As soon as the specialist looked at my surgery notes, he explained that the endometriosis had been burnt away, so if you imagine a mole on the skin, if you only burn away the top layer… the root remains under the skin. I was told that within 6 months of that surgery it was likely a huge percentage of the endo burned away would have grown back, another surgery was needed ASAP. I held back a little and then almost six months after my second surgery, I was back for round three. Things were different this time, the specialist actually listened to me, heard my concerns and addressed them via surgery. My third laparoscopy had shown wide spread, deep infiltrating endometriosis (DIE) that was all excised other than from my left ovary where again it was burnt away, however, this was in hope of letting me conceive naturally given the surgery had found hopes for fertility – I could live with that and I cried happy tears, but then moments later I was diagnosed with Diaphragmatic Endometriosis and I cried a whole different kind of tears – yes! I have a diagnosis and my gut instinct …was right, but blooming heck Endo on the diaphragm!

So that was February 2019, and now I’m literally days away from my fourth laparoscopy surgery for Endometriosis. This will be my biggest surgery I’ve had to date; and I have everything crossed it will successfully remove the endometriosis from my diaphragm by excising/ cutting it away. My left ovary currenty has a huge question mark surrounding it, believe me when I say there is nothing  more I want in this world than to be a mum and whilst egg freezing isn’t a subject even brushed upon, if my left ovary is that bad I would much rather it be removed than for me to live in constant, debilitating pain caused by it … to only have to have it removed in a matter of years any way. I guess that’s the sad reality of Endometriosis, especially in your twenties, the potential to say goodbye to organs in hope of a better quality of life (despite the impact on your dreams).

What are your symptoms?

Please remember that Endometriosis impacts everyone differently, my main symptoms are:

Nausea & Vomiting, severe bloating (Endo Belly), fatigue, exhaustion, brain fog, nerve pain, painful periods, heavy periods, painful sex, painful bowel movements, frequent bowel movements, stabbing pains, ovary pain 24-7, pain when exercising, pain when stretching, headaches, PMS, intolerances to a lot of food. Pain in diaphragm, shortness of breath, unable to catch breath, pain when taking deep breaths, pain wearing a bra including soft bras and sports bra, pain in chest, tightness in chest, pain up to and under right breast, pain in shoulder joint, shoulder blade 85% of the time in agony.

Add Hypermobility & Fibromyalgia into the mix and my pain levels in 2020 have been the worst I’ve ever experienced. 

What does invisible illness mean to you?

Invisible illness is heavily connoted by its name, an illness or set of illnesses that cannot be (easily) seen- and includes both physical and mental illnesses.

It has meant that I have had to become an advocate for my illnesses and for myself, because when “you don’t look sick” the general consensus is that you are fine. It has meant having to say “no” to a lot of things and then explain and re-explain how my illness impacts me. It means having random people come up to me when I’m out with mobility aid and ask “what’s wrong with your legs?”, its having professionals say “but you need to appreciate, with your hair done and your makeup on – no one would ever even guess there was anything wrong with you”. 

It’s getting up early just to have the energy and extra time to apply a fully face of make up and heavy concealer, to make myself look the way everyone is used to me looking, and to make me feel better about myself. But it’s living inside 24-7 when you’re not obliged to be somewhere else, exhausted and in pain with your hair on top of your head and PJs on.

Invisible illness is knowing your own body, trusting your gut and knowing that not everything has to be seen to exist.

Invisible illness means that when I try to make an effort I instantly face “but you don’t look sick” despite it taking all my energy to even show up.

Has your understanding of an Invisible illness changed over time?

I’m generally a lot more aware now than I’ve ever been before, and I guess until you get something you don’t necessarily get it. I used to take my mum out every weekend, and for years she never looked ill, there was no outward suggestion that she had a terminal illness at times. She always filled me with such awe and taught me not to judge a book by its cover and that most of the strongest people you will ever meet, are strong for a reason … life made them that way. So, I guess I’ve always been a little more insightful, I experienced her prejudgement when she outwardly looked “fine” and again when she was wheelchair bound. 

We never know what others are facing, even when everything on the outside looks so put together.

The worst part of having an invisible illness:

A side from having multiple chronic illnesses, there are a few things that I’d describe as the worst

  1. My body not being able to do the things that I want to, I’m chronically exhausted and so I have little energy at the moment.
  2. The impact that my illness has on others, predominantly my husband and dad, who have to pick up the things that I simply can’t do or aid me in doing them. There’s a sense of guilt that I can’t get rid of and I know they love me, but again there’s so much I want to do for myself.
  3. Loosing friends – I stopped drinking alcohol and partying in my early twenties, I was married by my mid-twenties and by my late twenties I’m now predominantly housebound. I’ve lost a lot of people on my journey, and I’ll be frank as to why, they don’t get it- they don’t want to get it and I’m seen as a massive inconvenience who cancels plans at the last minute. It is what it is, and right now I really don’t need anyone in my life who doesn’t want to be there, doesn’t want to even try and understand what life has thrown my way.
  4. A lack of understanding around Endo & Fighting to be heard – In short, I shouldn’t be the person educating medical professionals and battling to actually be listened to. 
  5. Chronic pain – living in a perpetual state of pain, little sleep, little rest and repeat every day.

The best part of having an invisible illness:

Undoubtedly invisible illness has taught me to be resilient, strong and true to myself, and I think they’re amazing qualities I may not have had without the journey I have to date. In all seriousness, losing my mum and being diagnosed with Endometriosis in the space of a week, is hands down the most difficult thing I have ever, ever experienced – and to be back in surgery again within six months of losing my mum was raw, real and hard. My mind always goes back to that time, and I have to step back and see everything that I’ve been through, everything I’ve survived and I am always reminded that things couldn’t ever be harder than that time in my life; so if I could get through that, I can get through anything this crazy life wants to throw at me.

I’m a very different person since getting my diagnosis and simultaneously losing my mum, the balance in my life changed – I was forced to focus on my own health properly for the first time in my life. I’ve become so much more empathetic to others and am always on hand to listen and let others talk. And yes, some of the best things about invisible illness is I’ve achieved everything I’ve ever done all in spite of my illnesses. I love the community and support that invisible illness has introduced me to, filled with amazing individuals (some who’s stories will be shared soon).

What do you feel is the biggest misconception?

Endometriosis comes with an onslaught of misconceptions, outside of the misconception that any gynaecologist can operate on Endometriosis (please find an Endometrioses specialist via Nancy’s Nook), here are just a few of the other misconceptions I hear all of the time.

“it’s just a bad period” – Well how come 365 days of the year I’m in pain?

“A baby/ hysterectomy /menopause will cure Endometriosis” – Wrong. There is no cure for Endometriosis and fertility is a very delicate subject.

“Endometriosis can’t grow on your diaphragm or lungs” – Extra pelvic Endometriosis has been found everywhere with the exception of the spleen.

“You’ll be better soon” – Endometriosis is an incurable chronic illness; it will be with me for life. I may have some better days, but even on those days my pain will still be at a solid 8 (even after my next surgery, I will not be magically cured).

Your hopes for the future:

On a personal note, I’m having my fourth surgery in a matter of days – my hopes are that this surgery is able to excise all of the endometriosis detected and in doing so remove two of the constant sources of pain I experience. In doing that, my body will be fighting less Endometriosis and less chronic pain, I hope this aids my current fatigue and gives me a better quality of life. I hope that in having this surgery I can help others who have or suspect Endometriosis on the diaphragm, I really don’t believe it is as rare as others thinks – I just don’t believe enough surgeons check.

On a wider note, I obviously wish for a cure and to help get there my biggest hope for Endometriosis is on an educational level – break the stigma and taboo by providing people with factual information from a young age, so that girls don’t have to spend decades believing heavy bleeding and pain is “normal” and educate boys early on too. To spread the word that this illness impacts 1 in 10 women, trans men and those who identify as non-binary, so it’s hugely possible it impacts at least one person in your life. I want Endometriosis to have traction in parliament, for awareness, research and funding to be injected into a space that it is so desperately needed in. I want Endometriosis to be brought into the 21stcentury, for more information to be given in medical schools and for patients to not have to be their own advocates every second of every day.

I have a lot of hopes that are all driven by the life I’ve experienced; for example that this blog helps reduce the diagnosis time for anyone who thinks they may have Endo.

Invisible illness looks different on everyone.

Thank you for taking the time to read, the next blog post will be from my amazing husband.

To follow my surgery journey closer follow me on instagram @Scousespoonie.

Natalie xox

chronic illness endometriosis health health and wellness Invisible illness

5 Comments Leave a comment

  1. Hi hun,
    Very brave of you to share your blog so candidly and openly. I’m so sorry to hear what you have been through and continue to go through and can very much relate to you. We are warriors 💪💖👊 who fight daily to keep going against this debilitating condition. Your mum would be so proud of you I’m sure. Here if you ever need to message or talk. Vix 💕 xx

    Like

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