Emma's Endometriosis Epic

I am Emma Latham, twenty-nine years old and this is my story, the story of my health anyway. If I included everything else it wouldn't just fill a page, it would fill a book. Maybe a book I’ll write one day! For as long as I can remember I've always been a sickly child; not sickly as in anything really serious, just colds, flu, the usual bugs kids catch. As I got older I developed problems with my ears from flying, then as a teenager asthma, bowel problems and slight anxiety issues and OCD - not the kind of OCD you would think though. I was obsessed with keeping busy, not stopping; this led to my mind and body giving way to exhaustion many, many times.

Then I met the man of my dreams. I fell pregnant and when my son was around 5 months old the pains started. My periods had always been painful and irregular, and I didn't think they could get any worse but they did. The doctors often suspected appendicitis, but I didn't have that. So I was just given medication to control my periods basically. I do find a lot of what happened before actually getting diagnosed a blur, so I may have missed out bits. That's what the pain does to you: it makes everything fuzzy and makes days blur together. What stands out the most though is the incompetence of a certain doctor at a certain hospital, starving me for a week to do tests, then sending me home stating "No point in doing any tests anyway because we are not going to find anything are we?" I was like “I don’t know” and was sobbing my heart out. I went home the next day and spent the next month in a worse state than the one which I’d attended the hospital in. I was scared to go to hospital and a bit anxious about attending the doctors’ surgery again.

So by then my son was five years old and I was exhausted all the time, in a lot of pain and being treated for tension headaches and depression; I say the word depression loosely because I didn’t feel I was depressed I was just not happy that I was in pain all the time, and found it hard to cope with that factor. And also I was suffering badly with my hands; I had the carpel tunnel operation and it didn't work, and I was too much of a wimp to go through the pain to have the operation on the other hand. I went to the doctors so many times to deal with pain and they just said “Period pains, new drugs blah blah blah”. For a long time I felt like it was all in my head the pain I was suffering and the way I was feeling. I just felt at a loss. For a long time I felt like it was all in my head, the pain I was suffering and the way I was feeling. I just felt at a loss. In between all this going off I tried to stay positive. I went back to university because I’ve always believed writing is a good therapeutic practice and I managed to complete a MA in Creative Writing. During the course though I had a miscarriage, and our son blamed himself. I felt sorrier for him than I did myself. I wrote this poem, and then didn’t really deal with it again.

Until We Meet Again

The magic stick reads:

Positive!

A million thoughts run through my head:

How can I afford another child?

We have no space!

What If I’m not ready?

I already have one child!

I need to figure out what I’m going to do

Abortion, no I couldn’t do it.

One week later sat at the computer

The baby is coming

Not to meet life, but to meet death

The gods decided his or her fate

And I had no say.

Today, I cope; I try not to think about it

He must have overheard me and his daddy talk

Thinking he is to blame for the loss of our baby

I begin to cry, hold him tight

The gods decided his or her fate

And we had no say.

Anyway I moved from several towns; my bowels got worse, the periods got worse, the headaches got worse, and yes the mystery pains I was having got worse, and my hormones were so out of control. One minute I'd be okay, the next minute I'd be screaming, and the next minute I'd be in tears. I just didn't know what to do; I didn't know where to turn. I mistrusted doctors and hospitals, but in the end I'd had enough so with persuasion, I went to see the nurse and the doctor. They suggested it may be Endometriosis; at that point I was like “Endo- what- e- what-o??” because I had never heard of it before. It was briefly described to me, but to be honest I was still puzzled.

On February 2011, I had a Laparoscopy; they discovered adhesion's had developed due to me having a C-section with my son, and Endometriosis in the abdominal area. I was lucky; as it was bad in that area but they managed to laser it away, I think! I then went on the Prostap injection not long after surgery. I hated the way it changed me. I know it’s meant to change your body into a menopausal state, but I was just “arghhhh!” How do I describe it, as I said before: the screaming, the crying, the shouting, but worse; my anxiety levels were through the roof. I was like dynamite ready to explode at any second, and I'd get so upset and angry about the littlest things. I had turned into a monster. 

My poor husband barely slept because I was pulling the cover off and on. I kept getting up during the night  because I was drinking so much fluid. I am surprised the whole house didn't catch pneumonia to be honest because of the amount of times I'd left the windows open; when the weather outside was freezing. My Doctor then suggested HRT to me, and I'd seen with my own two eyes what that can do. I did not want facial hair; I am not a man for Christ’s sake! I wanted to use HRT and deal with menopause when it’s the right time to be dealing with it, not before I am 30 thank you very much! I said good-bye to that idea, and hello to the idea of having another child. So the gynecologist sent me away all smiles all happy, with no reason why I couldn't get pregnant and wished us good luck.

My periods started being regular; I know regular I couldn’t believe it either. It took four months after stopping the Prostap -and it felt like I was waiting forever to stop using it. For some reason I thought “ok I’m Endometriosis free, now all I have to do is make love with my knight, have that perfect moment, a bit of magic and ping a little prince or princess will start growing”. But No! Because life isn’t a fairytale! Please understand that Endometriosis, isn’t something that just leaves you simply after one surgical dooh dah! I even went to the gynecologist again asking for more support in conceiving, and what could I do because I was in agony. I was told to choose right then and there to "go away and be in pain and try and conceive, or be treated." I felt awful being put on the spot like that. That health care personnel just seemed so incompetent as she suggested me to try the pill; even after I’d told her I couldn’t due to other health problems. At times I have been in so much pain I’d be screaming and crying “Just take it all out of me, just take it all out” meaning I want a hysterectomy, but I just got laughed at when it came to that remark.

Now this is where time and days blurred even more into one, because I finally convinced the doctors actually I need fertility treatment and what happens, soon as I sorted it out something else would go wrong with my health. My eyes start burning and I become sensitive to the light, I feel the urge to close the curtains and wear sunglasses even though there is no sun outside, it’s just daytime. I joked with the doctor, I think I am turning, turning into a vampire. Turns out I am not a vampire; sadly because that would have been kind of cool except the whole sucking blood thing; I’m practically a vegetarian. Anyway, I was seen by an Optician, who referred me back to the doctor, who refers me to a specialist at the hospital . . . At this point I start to get dizzy. Yes, I am blonde! But that’s not the reason. 

Well, the visit to hospital turned into nearly a three week stay. They found fluid in my brain causing pressure behind my eyes. I nearly went blind. It was scary; I pictured my son’s whole life in my mind, and the thought of not seeing him again was one of the worst experiences of my life. Various scans, x-rays and tests revealed that I have a birth defect: the tubes in my brain that take the fluids out are very narrow, and I also have chronic sinusitis. I was given more medication in the hospital, and the side effects at first were horrible. Some parts of this will make you laugh; some parts you’ll think how can she forget stuff like this? I forget what I am saying, or what I am doing, or where I am going, who I am, who my son is, who my husband is, I just didn’t recognize them. And I was aggressive and swearing and getting really agitated. My mum said I was like a stroppy teenager, she didn’t know how to deal with me because I’d never been like that even when I was a teenager. Just to add to the list of “Em’s Health Problems” I always get acid reflux, I’ve been in and out of hospital and the doctor’s surgery with that also.

When they say pain changes a girl, I totally agree. I have changed so much. I guess I have become more caring, understanding, and appreciative of the family and friends who have stuck by my side, even though I have cancelled on them numerous times. My attitude towards life has changed: I used to be so ambitious, and when I look back even though I wasn’t horrible and nasty I was kind of selfish, I have become selfless. I don’t care about having money or the best whatever material latest rubbish is out today. I don’t care about the big house, the fancy car, the big bank balance, a high end career - I once did though. All I care about is getting through each day the best I can, showing my family and friends and endo sisters that I love them, and helping and being there for them the best ways I’m able. I guess all I want is to make a difference; I just take it one step at a time. My story is not going to end here. I will make a difference because that is my purpose.

Article by Emma Latham