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Being a dad to a teenage daughter with endometriosis

(Warning this script does contain some offensive language)

When my wife asked what it’s like to have a teenage daughter with endo my immediate reaction was – in a blink of an eye and without thinking –F****ed, F****ed and more F****ed.

When I thought of writing this I told my daughter I think I’ll title it “Being a dad with Endo” my daughter piped up and told me I couldn’t say that because it read wrong and says I’m a dad with endo and it is her disease….

Bloody teenagers!!!!

Being an endo dad is one of the most emotionally confronting things you will encounter within your family. We all have gone through and mostly survived, in some way shape or form, the baby years, toddler years and enjoy watching our kids grow up and if we played our cards right, they will still talk to us when they are entering their teenager years, as well as our wife or partners talking to us as well.

We, as dads, start to relish the idea that we can threaten our girls that any boys we see making an interest in them will be confronted on the porch with a shotgun. If they keep up the attitude we will send them to boarding school in Meekathara, all of the things we plan in our heads for our girls’ future – you know the normal stuff us boys think of when we are avoiding work or trying to plan a road map of our future lives. Then all of the chats, dreams, activities and fun things come to an abrupt end.

My wife and I are blessed in our marriage, in that our foundation is based on love, trust and communication. Part of that is we are always to be on the same page when it comes to the kids we have. My first scare with my daughter was about 5-6 years ago (when she was about 10) at a family function we all were at a restaurant when she had a bowl of vanilla ice cream – within minutes she turned ghost white and went into some type of anaphylaxis– she recovered but my wife and I knew something was up.

A month or so later the same thing occurred, from memory it was a melting moment cookie – again she went ghost white and put the fear of god into both of us. So, starts the new shopping regime of watching what she can eat – being a dad, we normally take a back-seat role in shopping and cooking so we are off the hook – but when we think of a good idea we speak up, suggest it and often are told by our wives – NO – she can’t have that or NO – we can’t go to that place because there is nothing for her to eat ------ needless to say, guy’s get use to it. Endo has a detrimental effect on the kids eating habits and we have to come to terms that we will not get what we want and we have to be the bigger person and not be a drop kick and crack the shits over it.

My wife and I started going down the road of finding out what was going on with our daughter, the constant stomach pains and cramping, knowing that it was not just diet based, we speak to the GP. They initially blow us off saying it is a mild ailment. Over time each month the symptoms are getting worse, six months go by before the GP states they think it could be uterine and refers you to a Gynaecologist. In our case, we got the referral when our daughter in the very early hours of the morning was on the toilet asking for a bucket and help – I raced her to the emergency department only to be told that there is nothing they could do except provide some pain relief.

As blokes, we were often brought up in a way that if there no blood and if it is not broken suck it up and get on with it. I work long hours and only really see my daughter for a couple of hours each night but every time we cast a glance in their direction, they are looking like shit, often like sloths – wondering if this is what we are told a typical teenager is, so we push them to move, tell them to go do something and get your mind off it. Often, we forget or just don’t realizing that our partners have been witnessing our kid 24/7 like this as they can’t go to school. We have to remember they have been at the coal face and we just often breeze in, drop our bundle at them then leave either for bed or go back to work, the tension in the family can become quite high.

Once we saw the gyno, they recommended our daughter go on the pill. My initial reaction was but she is only a little girl 13 years of age – she isn’t going to have sex yet and if it happens it will be over my dead body. The pill does a lot more now than just stopping the eggs having a party. The only issue is it will take another 6 months or so before our daughter may see a noticeable difference. Yep another 6 months of them lying in bed or on the couch.

In trying to understand more about endo, you have to do hours of your own research – I personally don’t do Facebook, so I receive more of the information from my wife, and it is scary as hell to discover what many of the girls are going through. I tried pushing the idea of pushing for surgery to fix it and got met with the thought of my girl having colostomy bag for the rest of her life is a hell of a risk, if the surgery f***s up, no way is she having a hysterectomy at the age of 14 and the idea of getting her pregnant? Don't get me started. All of these are suggestions to help assist in managing this disease but will not help a teenage girl.

Guys, in essence, this is what this is – it is a disease and not just a woman on her period and suffering PMS. Please talk to your daughters and wives/ partners, if you don’t you will build up resentment and it could fracture the family.

We have spent thousands of dollars on alternative treatments and therapies some seem to work for a while others not so much but over time and talking to people we have found solace in knowing that all we can do is just take it step by step – day by day.

It has been just short of 3 years now that my daughter had to leave cadets due to the fatigue of Endo and be unable to participate in any external activity. Last year we pushed her in a wheelchair to get around larger public events we wanted to attend, this year she has found extra strength and better pain management so family life is getting better.

Guys if you are ever asked to describe what is wrong with them – paint this picture:

Remember when you were hit hard in the balls and you dropped like a sack of  Sh** - wanting to throw up, curling up in the fetal position, eyes watering and can barely catch a breath – that is like a flare ( or an attack ), once that pain has subsided we have the uncomfortableness and short stabbing pains for a little while, this is what it is like for the girls every day 24/7.  

Please hold it together for your family. When you see your girl on the couch or in bed playing on the laptop, don’t rip into her – remember internally she is suffering, not just being a lazy typical teenager, the social isolation, possible depression and the black dog hanging around is immense, cut them some slack. Please support your wife/partner because as mentioned they are at the coalface – we need to be there when required. We as dads often have a back-seat role in what is going on day to day, though week to week, year to year we are steering the ship providing love, support and stability to a family which is going through one of the toughest periods a family can endure. Love your family, trust your girls and communicate with them. - Colin Chinnery July 6, 2018

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