The Endo Profiles….Sinead…

Getting a diagnosis as a teenager can help, getting the right treatment early can help, it won’t cure it or take it away but it will stop years of going around in circles and thinking the pain you are in is the norm.  For Sinead, her early diagnosis gave her an answer as to why she was suffering,  but she also  was told some very difficult things at a very young age.  It is important that that we educate ourselves, and in turn push for better treatment from our GPs, our gynaecologists and our surgeons.

It’s funny what you remember from school and the things that you forget, often there’s very good reason for forgetting them!  After the recent buzz on Facebook about the disease and the interviews with Anton Savage, one person got in touch with me to say things finally made sense to her, incidents from school.  One particular incident she reminded me about happened in secondary school in 5th year, when my periods were particularly difficult and bothersome to say the least.  For 2 or 3 days solid I had run to the bathroom between almost every class if possible. This day I was running late for a particular class, where let’s just say you didn’t want to be late as you would bring a hell-storm down on top of yourself that neither you nor the rest of the class wanted to experience.  That day the teacher was late herself, and in my desperate need to get to the bathroom I made a split second decision to make a run for it.  10 minutes later I was still in the bathroom, it felt like every time I stood up someone turned on a tap inside me.  I was afraid to go back into class and sit still for the next 40 minutes because I was even more afraid of what it would be like when I stood up again…. I didn’t think the sanitary protection I had could cope…. Long story short I was so long in the bathroom I couldn’t go back to class without getting crucified, in front of the class.  I had no good excuse or at least not one I was willing to say in front of them, or even to the teacher.  I hid out for the rest of the class and my friend brought my bag out to me afterwards.  There were some raised eyebrows so I just mumbled about being unwell and didn’t get into details.  Maybe I should have told her, maybe even had the courage to tell the teacher, I might have been surprised by their reaction or support….There are many more stories like that, every month brought a few days of stress as to how to deal with my period and all that came with it.  Many more girls are going through the same thing.  Dealing with your periods are hard enough as a teenager but add all the extra things that this wonderful disease brings, is a lot to handle for any young teenager.  It affects their ability to take part in activities and in daily life at school, and how many times do young girls go home early or not go in at all because of the pain they are in.  The standard answer is still given by some GPs, “Welcome to the next 40 years of your life…”   By sharing our stories maybe we can help one of them, maybe by us being confident enough now, and open enough, one of them won’t accept that standard answer.

Name: Sinead 

Age range: 36

Occupation: trainee accountant

Diagnosed with Endo at: 16

Most difficult thing about living with Endo: Having to take pain killers that make you feel out of it, so many days in bed due to pain and a lot of hospital appointments.

As I was so young it was the pain at first and nobody would believe me. I collapsed every month and after numerous hospital visits the general Hospital transferred me to a Maternity Hospital.  There the gynae did scans, blood tests and still said there was nothing wrong. I ended up in A&E with my Mam one night, who flatly refused to take me home.  She bravely left me there thinking she would shock them into doing something for me.  Eventually they decided to do a laparoscopy to find out what was going on.  The gynae came back to me the next day and said I had Endometriosis and would not be able to have children.  This is not what a 16 year old needs to hear, and it’s not something any 16 year old is equipped to deal with.  At 17 I was on Decapeptyl studying for my Leaving Cert and going through the change……….., it was a horrible, terrifying experience.

Worst/most regular symptom: Pain and fatigue

Previous surgeries: in total,7 surgeries including diagnostic laparoscopy and laser treatment of the endo.  The majority of the surgeries were to remove chocolate cysts.

Alternative treatments used: I’ve tried every medical treatment going but haven’t tried any alternative treatment as of yet

Helpful hints for others: be prepared: always have a change of underwear, heat pads, pain killers and sanitary towel in your bag

One positive thing to come from having Endo: it has made me a strong person, stronger than I thought.  I have also become more confident when talking to doctors, I no longer just take their word for it and I’ve learned to fight my own corner. 

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