Defying pain or Denying it?

Living with persistent,chronic pain is never an elective lifestyle choice, nobody decides to welcome pain into their lives like you would welcome a old friend, instead pain is that relation nobody likes (or talks about) from a far off baron land who promises to visit just for a weekend but no matter how much you hint or try, once they arrive they never leave again.

                                          Fig 1 - The Visitor Big

Pain has always been a visitor in my life, having Endometriosis, I look back and realise that every month when my period came (even as a teenager) I had severe cramps and felt awful. I was however put on the contraceptive pill and stayed on it for about 12 years which masked the symptoms of my illness and kept pain at a manageable and what I thought 'normal' level.

Endometriosis effects 1 in 10 women in the UK, its the second most common female Gynaecological problem and can be confused with other conditions simply due to lack of awareness which ultimately means diagnosis times have been historically shockingly slow at an average 7 years.

The disease, for it is a disease (I have taken some years to be able to admit to myself that I am living with a disease), means that the Endometrium Cells that are found normally within the uterus walls migrate for some reason (that is not yet officially known to medical science) and implant within the pelvic cavity and/or other parts of the body. There is some discussion as to just how these renegade cells march their way to foreign soil , maybe they didn't leave when they were meant to (during a period) and did a runner up the Fallopian tubes , or maybe they are already laying dormant awaiting the hormones needed to grow and causes general havoc upon their unsuspecting host.

Whatever the cause, however helpful it would be to understand, it matters nothing to the 'here and now' of living with the symptoms of Endometriosis. 

I was lucky, in my journey, as I have had children without Endometriosis effecting my fertility, yet for 1 in 4 couples this is a very real symptom. Unfortunately the presence of Endometriosis can have a direct effect on fertility due to the scaring and damage caused by these mutant cells. I say I was lucky but that's probably debatable given the difficult time I had trying to build a brood. I sadly lost my first child late into pregnancy, and the first  kiss I gave my son was also his last as he fell into the longest of sleeps; I thought my heart would stop beating and my lungs would no longer know how to breath as the pain was so deep but I kept on going and over the next two years I was able to carry (with the help of surgeons, doctors and a needle and thread) two more children into this world.

It was post children, coming off the pill, and enduring some very stressful personal times that I started to succumb to my symptoms, pain came to town and he was not alone for just like Bonnie and Clyde there was another gun toting character, called by the name of 'fatigue' (feared by some , loved my none)

That was in 2007, the year of my diagnosis and first diagnostic surgery (a golden standard that has not changed as women are still diagnosed by Laparoscopy) and now in 2015 pain has outstayed its welcome by 8 years to a point where I'm so institutionalised by its presence that I'm not sure what its like to live without it; except of course it's all that I wish for.

In these 8 years I have endured multiple surgeries and waved a long farewell to my right ovary, I have shown my dignity the door (as its a guest that leaves a lot easier than pain does!) whilst displaying my 'ladyness' to dozens of doctors and consultants in the hope that somehow, someone could possible exchange my dignity for the an answer and ultimately a cure to the hell that I endure every day.

In these eight fine years I have raised my two children alone whilst managing the demands of a tricky divorce and subsequent volatile relations, I have loved and learned the hard way in that life can throw punches literally, I have cared for loved ones whilst they have passed on, I have worked hard and found myself running my own business, I have graduated from art college with a Masters in Arts Degree, I have run an Endometriosis Support Group raising thousands of pounds for Endometriosis UK whilst also helping lots of women find their way in this medical jungle; I have had a fruitful existence it cant be ignored; I have defied my pain.

Or have I?

In all these years it is until only recently that I have realised (with the help of some very potent Psychology sessions) that I have been denying my pain, denying my illness as a coping strategy to enable me to move forward despite my suffering,

Every day I wake up, often crippled with pain, as I now also have Fibromyalgia as well as Endometriosis; like two jealous sisters competing with each other for mothers attention (I'm Mother!). Well I can hear them both and that is exactly my point. I have 'got through' these years highly functioning, like someone pulled out the throttle and forgot to put it back, cranking up the volume to drown out the squabbling sisters hoping that maybe if I ignored them they would eventually get bored and leave me alone; alas they have not.

I have come to realise that although outwardly it appears I am defying the pain, my diagnosis, that I am achieving and getting ahead I know without a doubt that my pain is still winning the day as I have allowed it to stay, I have become accustomed to my daily pain management rituals involving enough narcotics to knock the hulk into submission, wheat bags stuffed down my elastic waistbands that follow me to work in the morning red hot enough to burn the skin and ice-cold and no-use to anyone on the way home; electronic tens machines in all their sticky glory that seem to cause much amusement to anyone not using them for pain management; and the list goes on. 

The insidious guest has weaved its way into my home and I have allowed every aspect of my life to be held to ransom. I work self employed so I cant sack myself, I don't go out and when I do I am 'that friend who only drinks water' , I no longer take care in my appearance, not like I used to, and I have grown weary in both mind and body alike. I am a tired in all aspects of being me, tired of being in pain and tired of being tired.

This may sound defeatist, but I am being honest and open about how I feel and within this truth you find defiance.

I can no longer drive myself on full throttle; I see that all this ever did was make things worse and the louder I turned up the music to drown out the noise, the louder the jealous sisters bickered. It became a cycle that I could not sustain. Instead I have turned my music down and I am listening intently to Mademoiselle Endo and her moody sister Fibro for they may just hold the key; not to a cure but to understanding and a better quality of life.

If I wake up in pain then I acknowledge the pain, I allow myself to feel emotions about it and I hold no shame at all in de-tasking my day in order to facilitate whatever rest and 'pacing' I can. I have stopped trying to frantically push pain out the front door and have reverted to having civil conversations with it (based loosely around setting a departure date).

I have begun accepting the word Disease, I have begun making peace with the grief of loosing all that I hoped to be and I am learning to remind myself that some mountains are just too big to climb at the moment and in all honestly the only person expecting me to climb any mountains is me!

I feel that now, still immersed up to my eyeballs in pain medication and paraphernalia, as raw as I could ever feel, with no end in sight (unless my next spine-injection does what its supposed to do and miraculously blocks the pain to my uterus), that I am now defying my pain because unlike before I realise acceptance and living in the now, pain and all, brings me a sense of mental control. Learning to listen and accommodate the unwelcome visitor with a new sense of mindful knowing.

See, I have another long-distance relative called Mindfulness and its packed its suitcase and is coming to stay too; Its possible that inviting Mindfulness into my life, rather like hiring my own pain specialist 'Mary Poppins', might just be what's needed to loosen the grip pain has on my life, to encourage it to quietly take a seat in another room along with the bickering sisters of doom whilst me and 'Mindful Poppins' have a carefree cuppa  (caffeine free of course!) in the kitchen.

Fig1 Image taken from https://angiesdiary.com/wp-content/uploads/2010/09/TheVisitor_big2.jpg

For more information about Endometriosis visit www.endometriosis-org.uk

A blog by
Michelle Middleton
Support Group Leader - www.endometriosissupportgroup.co.uk

The Endometriosis Primrose Ball 2015

On the evening of Saturday the 7th Match 2015 we held the very first ever Primrose Ball for Endometriosis Awareness, to celebrate both Endometriosis Awareness Week and also International Women's Day with all money raised to benefit Endometriosis UK.

If our event had an Aura, it would emanate a bright yellow glow like the sunshine of a brand new day and a glittery haze only felt in the most hopeful of dreams; that is how beautiful our evening was.

We had sold out a few weeks before the big day, and we knew that our guests would be a mix of Endometriosis patients, friends, families, medical practitioners and therapists , with a representative of Endometriosis UK too... bringing everyone together who understands and supports women with Endometriosis. United under one roof for an event like never before!

Drinks were served in the foyer and guests were personally shown towards suitable seating, upon themed tables full of goody bags and surprises! Our tables represented 'Self-Management' and each table was  themed on (Nutrition) 'Eat me', 'Exercise Me', 'Sleep Me', 'De-Stress Me', 'Heat Me', 'Aromatherapy Me', 'Love Me', 'Meditate Me', 'Tea Me' and 'Beautiful Me'.

                                          Our tables filled with goody bags and surprises

It was a very special moment, looking across the room and seeing so many people dressed in evening wear, making such a fine effort for our event, so much glitter and sparkles that a magpie would have died and gone to heaven!

"It gives me great pleasure to welcome you all to The Endometriosis Primrose Ball 2015" are words I will never forget saying, filled with pride and expectation, the culmination of months of detailed planning and the moment when a dream became a reality.

Guests were instantly dropped into our Endometriosis themed extravaganza by the means of a Myth-busting Quiz. Each table formed two teams, answering 10 questions about Endometriosis such as "pregnancy will cure" or "can men have Endometriosis?" ... these true or false questions gave us a useful insight into the general understanding of Endometriosis , and ultimately gave the winning table (only 1 table scored a full house) a giant chocolate tree to munch upon all evening.

The prizes did not end there ! to get everyone in the spirit we had secretly hidden a 'winning' envelope under each table , the person sat next to the envelope won a prize! It was wonderful to see people raising there hands and clapping with joy at being the lucky winner and they were invited up to receive their specially themed prize! (which included Beauty Vouchers, Yoga Vouchers, Carolyn Lovett Book and much much more)

                                          Alison receiving her prize from Rosalind

Then it was time for our starter which was a simple and tasty tomato soup, full of flavour rather like our event I hope! and settled us all ready for our first speaker of the evening Mr Anthony Rutherford.

                                           Mr Rutherford making his speech about Endometriosis

Mr Rutherford, a leading Endometriosis and Fertility specialist based here in Leeds, shared his words about Endometriosis.  The room fell silent as Mr Rutherford talked about the effects of Endometriosis on sufferers and their families, how in his experience Endometriosis can be so very difficult to manage without some invasive treatment (be it hormonal or surgical) and that ultimately a surgical approach may be the only realistic, long-term, solution for a better quality of life; free from pain (or more in control).

I personally felt privileged and grateful to have the support of Mr Rutherford at our event, it was so very important to bring every aspect of Endometriosis care and management under one roof ; to educate and increase understanding from a variety of viewpoints and perspectives.

With a large round of applause for Mr Rutherford we then sat down to enjoy our main meal which was beautifully prepared (Chicken with thyme potatoes or Mushroom Risotto) by the Leeds Park Plaza; although without time to spare we took opportunity to begin selling our Primrose Prise draw Tickets ... and how they sold!

Once everyone had eaten it was time to introduce our second guest speaker, Claire Robson, one of our Support Group Members and an active part of the sub-culture of on-line Endometriosis support groups (within Facebook for example).

                                          Claire Robson, our second guest speaker

Claire gave a touchingly honest and at times emotional speech, sharing her Endometriosis story with its highs and lows, allowing us to gain an insight into the often heartbreaking story of symptoms, diagnosis, treatments and surgeries... the realities of being an Endometriosis patient.

After this event, many guests approached me and told me how emotional they had found Claire's speech, that somehow her honesty had mirrored their own journey and it had enabled them to acknowledge their own thoughts; and also allowed their partners to hear words that they have longed to say themselves because they have found it hard.

Following on from Claire we had our third and final guest speaker, Alice Smith, the young (Ambassador and) Trustee from Endometriosis UK. Full of life and vibrancy, Alice gave an animated speech talking of her own battles from a very young age with Endometriosis.

                                           Alice Smith, our final guest, addressing the audience

Alice not only embodies the notion that Endometriosis effects young women and girls too, but she also advocates for awareness of this. This is something The Primrose Ball has recognised within its own manifesto of change, and seeing Alice talk so openly about her own experiences was indeed an education because its very unusual to see a young woman talk so openly about Endometriosis and with the aim to educate and empower others. Endometriosis UK provide support for women and their families and they continually strive to raise awareness and change things, for women with Endometriosis, for the better. They advocate us in a very big fish pond and I was absolutely thrilled that Alice could come join us at our event as they are a critical link in our chain.

Alice also took a moment to present me with a beautiful basket of flowers, as you can see I was taken by surprise and overwhelmed by this gesture,

                                                       Michelle being surprised!

With a very large round of applause that was the end of our Guest speeches and time to promote our text donating ! This enabled anyone with a phone to make a donation towards our event, which will all add to our total! We can confirm that text donations came to £206 and will be gifted directly to Endometriosis UK through Just Giving.

                                     Our Just Giving page is active until December 2015

During our desert (which was THE BEST EVER chocolate brownie) we had a very generous anonymous donation of £1000; this was a real highlight of the evening for us as this donation not only secures any future events but also will enable us to take some of our practical idea's and turn them into realities that will support women with Endometriosis in the north, young and old. 

Next it was time for our very special Primrose Awards 2015. We had many nominations in several categories and with careful consideration we were thrilled to announce the following winners.

Each winner was selected from a large list of nominations, and represent what it is to care and show understanding and ultimately make a real difference to lives of women with Endometriosis.

• Complementary Therapist - Mike Duffield (not present but a thank you was read out on his behalf) Mike Duffield was nominated for his particular support of one of our group members and Mike was thrilled to receive this award.

• Family Member - Donna Thompson won this award for just being there, in every way for her sister, and providing care and understanding throughout. Well done Donna.

                                          Donna proudly displaying her award at her table

• Friend - Mel Flyn (not present but was collected on her behalf) This award was given because of friendship, of being there and making a real difference to somebody else because of it.

• Medical Practitioner - Mr Trehan gave a very honest and emotional speech, highlighting how much this award meant to him but also how personally he takes every case of Endometriosis. I found, once again, there was a silence that fell in the room when Mr Trehan compared Endometriosis to a Cancer, that although Cancer kills and Endometriosis does not, Endometriosis does take your spirit and your soul. Hearing somebody, like Mr Trehan, talk at our event is a privilege and an honour and we are thrilled to present Mr Trehan with his award.

                                          Mr Trehan accepting his Primrose Award

• Advocate of the Year Award - Mr Rutherford was awarded our final award because of his commitment to care and level of understanding he has shown his patients; and the Endometriosis community, We were thrilled to have Mr Rutherford to come and speak for us and even more thrilled to hand him his Advocate of the Year Award 2015.

                                          Mr Rutherford accepting his Primrose Award

Now, there was actually another award which was a total surprise to me! As a support group leader (I have been for some years) I am touched beyond words to accept a Primrose Lifetime Achievement Award. I certainly did not expect to be ambushed with a gorgeous bouquet but I think the words that were spoken and genuine intention of the gesture makes it impossible to not feel thrilled that somebody would feel like I deserved such an award. Thank you to everyone involved with this, its lovely to be appreciated.

                                          Julie and Rosalind presenting Michelle with her Primrose Award

It was then onto our Primrose Prize Draw, we had some amazing prizes all donated by some amazing people. We had some TalkTalk X-Factor Live Tickets, Super-Dry Designer Jacket, Jewellery, Art Work, Vouchers and much much more. It was very exciting handing out the prizes and congratulating all our winners, such a fantastic atmosphere !

                                          Michelle presenting Emily with her TalkTalk X-Factor Tickets

We were also peddling our wares during the evening ! Our Primrose Ball Hooded Sweater was available to buy on the evening (and beyond) and we also had 1 up for grabs in the Raffle! Love and soft and I'm cherishing mine!

                                          The Primrose Ball Hooded Sweater is available!

Our last event of the evening was the Primbola, with lots (about 170) items up for grabs we made sure everyone had a chance to win something ! Our event was about giving and I truly hope everyone felt like they were being spoiled! Staying true to form, I bought 10 tickets and won 2 of my own items back!

                                          So many prizes!

We ended the evening with a good dance. and it was fantastic to sit back and enjoy watching everyone have such good fun. Even our mascot 'Prim Bear' took the opportunity to sit back (in my shoes) and take in the atmosphere!

                                         Prim Bear having a rest!


Endometriosis is a disease that can slowly take away your quality of life, your joy, and to see all our guests full of smiles was truly a powerful vision. 

Women with Endometriosis standing together in solidarity at the Primrose Ball 2015

The Primrose Ball raised, in total, £2810. 

This money will benefit so many women with Endometriosis , both nationally and here in the North, I am very proud to have raised so much money but ultimately success is in the awareness and understanding that we shared which is priceless.

So here's to the 2016 Primrose Ball ! 

See you there !

Fatigue - So tired it hurts

Fatigue is by definition a word to describe extreme tiredness or weakness through exertion or continued stress, which pretty much sums up one of the main symptoms of Endometriosis.

Tired of being tired? I know I am.

But its not just feeling tired, we are not simply a little bit sleepy, so as far as I am concerned the word 'tired' is far off the mark when it comes to describing that feeling when your whole body is in a total state of exhausted disarray.

So tired it hurts , not even sure where it hurts unless 'everywhere' is a place... and although sleepy (a side effect of some pain medications too) its not always easy to actually fall asleep no matter how much you would like to.

Fatigue is waking up and feeling like a herd of Buffalo used your bed like a dance floor, often there is nothing refreshing about 8 hours sleep , just literally a rude awakening. Somehow the blackness of a dreamless sleep is the only escape our conscience mind can find because once awake its the same old feelings of pain and fatigue.

Or maybe, its waking up feeling energised but as the day unfolds you feel like your being weighed down by a an enormous blanket, each step feeling heavier and more exhausting than the next.

Sometimes this symptom is most prominent just before, during or just after menstruation however fatigue can be a constant , day in and day out. Unmanageable and invisible.

Many women talk about having the occasional diamond day, where for no known reason pain and fatigue have taken a trip to the shops and their absence is deafening. Energy and optimism fills your body and your mind and you do do do; making hay while the sun shines. This is what is called a 'boom' of energy, and activity, that reminds you of what you used to feel like and what you wish you felt like again. However, with every 'boom' there is a 'bust' and over the following days the fatigue can come back harder and stronger like a jealous partner, furious at your momentary liberty and fighting to regain control.

The problem is not only the physical and emotional distress fatigue causes but also the lack of awareness surrounding fatigue as a symptom of Endometriosis and a total lack of support from a diagnostic and treatment perspective.

I can say this with confidence, based not only on my own intrepid experiences but also from the numerous encounters with women who have no idea that their Endometriosis is somehow linked with them feeling like their very life-force is being drained away.

Fighting illness, surgery (anaesthetic) , healing and medication including hormone manipulating treatments can put an enormous strain on the bodies resources, leading to fatigue.

Life does not slow down for those that fall ill and trying to keep up can exasperate pain and fatigue, pushing ourselves past our natural limits; mostly because we don't know where our new 'Endometriosis' natural limits are.

So what can we do? how can we manage fatigue medically or otherwise?

Firstly its important to let your GP know about fatigue, as there can be several other underlying health conditions which could cause this symptom, we often forget to consider that there could be more than one culprit post-diagnosis and linking in with medical practitioners will build a history and allow for further explorations. It could be worth discussing secondary conditions such as CFS/ME and Fibromyalgia which in my experience often follow on from long-term chronic pain conditions, especially those in women aged 30+.

Its important to look at lifestyle and consider both mental and physical changes, as our bodies may need a more sympathetic and endo-friendly approach.

Pacing ourselves, thinking about limits and not over-doing things especially during times where symptoms are worse will give your body the best chance of avoiding big flare ups.

Ensuring hydration, optimum nutrition and gentle regular exercise are fatigue-fighting actions, not cures necessarily, but certainly good practice choices to shelter ourselves from the oncoming storm.

Acceptance is key, taking time to acknowledge the now, to not take blame ourselves for how we feel but instead listening to what our bodies are saying and live a more mindful life.  This is a process, not something you can do over night, but a journey that can be painful as you let go of some things you really don't want to and accept the 'new' way of living.

I think of it a bit like a filter, the 'Endo-filter', which I now remind myself to apply to my plans.. things may seem achievable and realistic on paper but when that filter is applied I can often see that I'm doing too much and have given myself little chance at managing my symptoms. I might say yes but my filter says no no NO!

Fatigue is real, its debilitating and it can take the sparkle away from the shiniest of diamond days and it is my belief that a more proactive approach needs to be taken upon diagnosis by asking the question  "and do you suffer from fatigue?" 

This is why support groups are so valuable because without meeting others you often do not realise that the way you feel is not uncommon for women with Endometriosis. Many women have arrived at meetings totally unaware that there was a 'name' for how they felt and that it was a key symptom of Endometriosis, they left the meetings feeling like their world made more sense and ultimately more bearable.

Stealing a quote used recently by a renowned Endometriosis Specialist, "Endometriosis may not kill you, but it can destroy your soul" Powerful words that many will unfortunately relate to.

Thank you for reading my Endometriosis Blog, here is a poem to leave you with called 'Dear Body' that I wrote only a few weeks ago when I woke up one morning and felt overwhelmed by the pain and aching of my body.

Michelle

Dear Body

Why do you turn against me?

Was it something I said?

You betray me when I need you,

people thinking it’s all in my head.

I don’t want to keep on fighting you,

I remember a time when we were free,

but it seems the more I try to,

the less there is left of me.

Please body can we try resolve this,

Can’t you ease a little pain?

Can we get back to the beginning?

Or will things never be the same?

You know I've tried everything,

But it makes no difference to our ends,

All I want is us to be in harmony,

Though I fear your will, it never bends.

Dear Body,

It must be something I failed to do?

I have carried the blame for far too long,

Or a curse handed down from distant hand,

Or a past life that went terribly wrong!

My mind can’t make any sense of why,

I am in pain every single day,

Why my strength is leaving my once supple hands,

I never wanted things to be this way.

So body, please just talk to me,

tell me what I can do,

white flag is raised high into the air,

I surrender in my war with you.

Michelle Middleton

Endometriosis Support Group Leader

www.endometriosissupportgroup.co.uk

Endometriosis Support Groups and the 'Language of Endometriosis'

The Language of Endometriosis isn't a complicated notion; it is in fact a very tangible feature of living with Endometriosis and is at the heart of running an Endometriosis Support Group.

Endometriosis, Laparoscopy', Gynaecologist , Zoladex, Mefenamic Acid, Tens Machine, Hysterectomy, HRT, Mindfulness and Infertility are only a few of the myriad of words that populate the 'Endo-Language' that we, as patients, are surrounded with. 

What makes a support group so potent is that we all speak this language!

For a newly diagnosed patient, so much of this 'speak' is brand new and with this newness comes fear and apprehension; what does it all mean? how does it effect me? who else understands?

For a long-term Endometriosis warrior (because that is what we are) this language becomes familiar as we clock up dozens of appointments, surgeries, medications and have had the time to allow discovery through on-line research and social media groups.

Anyone reading this is most likely falling into the bracket of 'on-line researcher' and will understand what I mean when I say Endometriosis related words pop out from the search engine results like frogs on a hotplate and it is these familiar words that form the basis of our own understanding of this disease and how it relates to our own health footprint.

The trouble is what happens next with all this information we access and process; who can we talk to that not only understands this information but can bring it to life through personal understanding and contextualisation? 

Family members can support emotionally, and can often be very much involved, but this is not a given and many women are unable to have a straight conversation about Endometriosis with either family or friend. "Endo what???" is often the first stumbling block! 

The word 'En-doh-me-tree-osis' appears that hard to pronounce (bit of a tongue twister apparently), and in my experience, most people begin to shut down their listening at that very first introduction; and if that hasn't begun the alienation of Endometriosis language then the explanation when faced with "and what exactly is enderrmetrsis?" certainly hammers some nails into our 'lets talk about it' coffin!

"Well its when the cells in the lining of my womb are found in other parts of my body" is not only awkward for a sufferer to have to talk about what is, quite frankly, gynaecology; and its often uncomfortable for the listener to suddenly be faced with someone bravely tackling the great battle of an extremely rebellious uterus,  sorry ovaries that have been banished to lands afar and not forgetting extremely aggressive bowels.

Personally, as a seasoned 'endo-talker', I have no trouble broaching the conversation surrounding what Endometriosis is and I have my much versed patter that enables me to confidently introduce Endometriosis to the listener ; only last week did I explain my illness to an elderly gentleman. He asked and I went for it, and he listened ... paused ... and then told me all about his prostate. We bonded amongst the wastelands of gynaecology and urology!

It is however, anecdotes apart, very hard indeed to feel wholly comfortable explaining and sharing ones gynaecology; if one had a gender unspecific and more 'well known' (familiar) disease then no explanation would be required as people would already know the answer to their questions. This does however highlight the need for talking, sharing and breaking down the walls of taboo as we ultimately aim for a society that 'knows' Endometriosis; all relative to its prolific place within women's healthcare.

Taboo features heavily within the root psychology of Endometriosis and society, placing this disease in a position that does not sit well within a normative male society, compounding the difficulty of having a female gynaecological disease and taking it appropriately serious compared to other less destructive diseases. This is a deep conversation best left for another blog, but in regards to language of Endometriosis one must consider that taboo does directly effect how Endometriosis is received by the listener (and society as a whole)

The sooner we get talking the better, like most languages it is better to learn young and be aptly fluent when the need is required; there should be more awareness during school based health education. Prevention is better than cure, but how can we do this when so many young women are unaware of Endometriosis; unaware of the startling statistic that 1 in 10 women are affected by Endometriosis. How can women be watchful of the disease when no-one cares to warn them about the symptoms in the first place, 

This is why support groups are a revelation, it is a face-to-face forum where we all speak the same language, we all speak Endometriosis, We don't have to apologise, we don't have to explain at all; in fact we can sit, watch and listen (listening is the biggest part of communication) and feel the isolation of illness melt away like rain clouds leaving a darkened sky. It can be a place to say out loud, in safety, the things that have been left unsaid through fear or hesitation, its a place to learn and gather experiences alike your own, its a place to be inspired by the strength and fortitude of others and its a place to offer an ear and hand to others also in need of support.. 

Words are powerful, and there is no doubt that finally (or momentarily) being understood brings renewed determination to continue ones own health journey with courage, however the greatest strength in words is that of support and encouragement; it takes only a moment to show compassion and understanding (and costs nothing but a little time) but the ramifications can truly be felt a lifetime.