Endo-belly ... the cruellest irony?

I may as well kick any self-preserving dignity out the window, (of which after the amount of gynae appointments I've had there is very little left anyway), and be absolutely honest about something which I find incredibly embarrassing.

I would like to dedicate this blog to my wayward belly; or rather to the enigma that is the "Endo-Belly" as it's fondly known within the many online Endometriosis communities.

                                    Definition courtesy of Google

Bloating is a very real symptom associated with Endometriosis, a controlled study in 2009 by the NCBI* concluded that, 

"Painful abdominal bloating appears to be common in women with Endometriosis and causes considerable symptomatic distress ... as 96% of the women studied suffered with measured bloating that was both painful and emotionally distressing" 

As a support group leader, this is a symptom that gets all the ladies nodding in sisterly agreement, bonding over distended waistlines, sharing stories of discomfort, and embarrassment, with a gratefulness at finding 'others' who know how it feels (after no doubt spending years feeling that they were the 'only one').

I have taken to photographing my belly; even though I find it hard, as a way of proving to my GP that 'it happens', I feel that using the word 'bloated' is not enough, I am MORE than bloated ... I am uncomfortable to the point of agony as my belly grows itself towards a neighbouring postcode, I am miserable, and I am looking for a reason, and ultimately for an end to this embarrassing symptom.

There is as standard, the GP's obligatory finger-point towards IBS, (something I have had for many years too), which often precedes an Endometriosis diagnosis. However, IBS is symptomatically similar only in part, yet many women struggle to break out from their initial IBS diagnosis, which adds to the average, (and unforgivable) diagnosis time of seven years for women living with Endometriosis.

I don't go swimming, or wear fitted clothes, and a looming sense of horror fills me as summer approaches as it's the season of unforgiving, skimpy clothes, and the echoes of that dreaded "Congratulations...." start ringing in my ears.

                                                                       My Endo-Belly

My mountainous Endo-belly has resulted in numerous exclamations of, "when's the baby due?, asked by embarrassed well-wishers, who naively and thoughtlessly congratulated me on my bloated tummy. I have been congratulated so enthusiastically that I actually felt guilty for spoiling the fun; I have been guilty of deepening the horror further by pointing out that the only living thing inside me is possibly a tape worm! (Which may burst out at any-time like a scene out of Alien).

I am used to those discreet side glances in the playground as the wind catches my tent like top, and I have become best of friends with my jeggings, pulled so high that even Simon Cowell would blush! My bloat friendly wardrobe consists of clothes ranging from my 'normal' size 12, to a forgiving size 18; all because my belly has a life of its own. Hard and round; demanding to be seen, first thing in the morning, or last thing at night; there is no reasoning to my mysterious yo-yo belly.

Having to apologise for NOT being pregnant is both heart wrenching and embarrassing, and it demonstrates how living with Endometriosis has many side effects and psychological implications, which effect both personal well-being, and self-confidence.

If I know one thing, it's that it is never OK to congratulate a woman on being pregnant unless you know for certain that she is in bloom. However, being offered, a seat on a packed train simply on the grounds of serious belly-bloating is a bitter-sweet silver lining to what is an uncomfortable cloud.

This has a massive effect on the way I feel about my body, how I dress, how confident I feel in my own skin as a woman, especially when heavens forbid I have to get naked and be sexy. I can't even remember what sexy feels like. For me these moments are like taking a fumble in the dark with a beech-ball in the middle; the sensualities of my tum were long abandoned the moment I could use my belly as a shelf for carrying things.

Then comes the cruellest irony. Many women battle with infertility as a result of how endometriosis has ravaged their reproductive anatomy. They are also tormented by the way their bodies bloat and contort in such a way that people mistake them to be pregnant. In the past I have even bought a pregnancy test because when looking at my own reflection in the mirror I could not be sure that I wasn't expecting, I was seduced by the temptation, if only momentarily, to look at my body in the mirror, to caress my bump and to fantasise about "what if I was"?

Daydreams like these are often left unspoken, incredibly private moments, that inevitably lead to the realities of, "if only I was".

Endometriosis has a lot to answer for, it hits us hard not only physically, but it also impacts our lives detrimentally with the emotional and psychological burden which it carries with it. We are however, fighting back as we are connecting and finding awareness, comfort and support via online support groups. For so long I have hidden my 'Endo-belly' away, but recently I tentatively shared it online within the 'Yorkshire Endometriosis Chat' Facebook group , hoping to find others who understood ... To my surprise others began posting their belly pictures too; it seems that I am not alone and that brings me untold comfort,  I am normal, I am understood, and that is why I have dedicated this blog to my belly, so that others might also find comfort in knowing that they are not alone. The belly might be winning a few battles, but if we stick together and support each other, I know that we will win this war!

Written by Michelle Middleton

Endometriosis Support Group Leader

Co-Founder of the Endometriosis Primrose Ball

For more information about the support group 

www.endometriosissupportgroup.co.uk/

For more information about the main UK charity 

www.endometriosis-uk.org

* Study can be found http://www.ncbi.nlm.nih.gov/pubmed/"20085682"
Abdominal bloating: an under-recognized endometriosis symptom"