On May 15th, 2001, I saw my new endo specialist. Once again I was very let down.

He didn’t treat me like an individual; he treated me like all of his other patients. I don’t believe that this is a fair way to be treated, as endo doesn’t effect each person in the same way. He said that he would do a laproscopy on August 22nd because there is still endo on my ureter, bladder, left ovary and possibly my bowel. The specialist prescribed a Macrobiotic diet for me to follow, which with my other health issues is too risky. He also told me to stop taking my birth control pill for 3 months so that the endo is more visible during the laproscopy. Of course, he neglected to tell me what would happen when I stopped taking the pill.
When it came time for me to start a new package of pills, I didn’t and since then have suffered from severe headaches, more pain than normal, and lactation. I expected the pain, my cycle to be messed up and heavy periods – but lactate for over 8 weeks?! This wasn’t something I expected.
I’ve had constant back pain that has made it almost impossible for me to sleep. The pain has travelled down my left leg, which makes it very difficult to walk, and I can’t wait for my surgery to happen.

Without my supportive boyfriend, and my wonderful friends at www.endo.org.uk, I would be lost. I would be going crazy from this disease and not trying to get by day by day. I’ve managed to work almost full, 35 hour weeks this summer, which for me has been a struggle. Even when I’m in pain, I’ve gone to work and done the best I could do. I have also started trying to find other women in my area who suffer from endo so that we can start a support group. I’ve written a letter to my MPP, which will be sent on August 11th, so hopefully that will help in raising awareness.

For now I am done with my story. I will update it as often as I can. As I said at the beginning, as long as I struggle with endo, my story will be told.

Arianna Chiasson

I saw my family doctor and right away she said she wasn’t sending me to see another doctor because two was enough and that I had to “grow up an deal with it” and “stop letting it rule my life”.

I didn’t go back and see her for well over a month.

The pain continually got worse. On March 12th, 2001, the pain was so bad it hurt to move. I felt like numerous knives were repeatedly stabbing me and that they were being twisted around. Every time I moved, it felt like my insides were being torn apart.

On March 14th, 2001, I went back to see ob/gyn #2 to see if he would do a lap on April 3rd. The pain was so bad that my left leg had begun to hurt as well. If I had had a lap on April 3rd, it would have messed things up with college, but it might have eased the pain. At that point I just wanted to stop hurting all the time.

The trip was pointless. The ob/gyn informed me that he wasn’t qualified to do a laproscopy and he didn’t know how to treat endo. He said all he could do for me was a hysterectomy. He gave me Tylenol III with codeine (pain killer number 7) to take along with the anaprox and said that he’d send a letter along with a referral to the endo specialist I had found in hopes that I’d get an appointment sooner.

I was so mad at my family doctor that it wasn’t funny. I kept thinking, “How could she send me to see someone who can’t even treat endo and knows nothing about it?” All I could do was hope that I got in to see the specialist soon.

When I returned from my appointment, I stayed home from afternoon lectures and took a Tylenol III, as ob/gyn #2 had told me to do. It didn’t do much of anything so I took one on top of an anaprox at supper time. By 7:30pm that night, I was seeing double. It did alleviate the pain a bit and I managed to get some sleep.

The next day I went to college with no pain killers and was in a lot of pain. I took a Tylenol III and an anaprox at supper and went to bed. I ended up feeling nausea, my head was hurting and I was seeing double. I slept for about 3 hours then was awake crying from the pain.

I called the endo specialist’s office on March 16th, 2001 and his secretary said that they hadn’t received anything from the ob/gyn but that she’d set aside May 15th for me and put me on the cancellation list. She also told me that no doctor would recommend taking the Tylenol III and anaprox at the same time and to go to emergency if things got worse.

I left a message with the ob/gyns office to send the stuff and they called later on to say it’d been sent. My mom called the specialists and made my appointment for May 15th at 10am. I was really worried about not being able to have kids and having to have organs removed if necessary.

Continued in Part 3

Before I begin telling my story, I wanted to say that this is going to be a continuing story. For as long as I continue my battle with this disease that so few know about and understand, I will keep writing about it.

I always remember having extreme pain when I had my periods. I was put on painkillers and the birth control pill and told it was normal for women to have pain during that time of the month. It was normal for me to get so weak from the amount of blood I lost and to be in so much pain I missed 2 days of school every month?! I trusted the doctors and accepted their diagnosis. That was in 1993. Since then I have been on 5 different painkillers and several different types of birth control pills.

On August 14, 2000, I was finally diagnosed, via laproscopy, with endometriosis. My mom had read an article in a Reader’s Digest about it and it gave a list of all the symptoms – I had nearly every single one so at my request my family doctor refereed me to an ob/gyn. When I saw the doctor for the follow up appointment, he told me that he couldn’t remove all of the endometriosis. In other words, he wasn’t skilled enough. He said that I had 2 options open to me – Lupron or Danazol and that I was to have my children before I was 30. When I asked him about the possible side effects, he said I’d only suffer from hot flashes. I didn’t trust him on that since I knew every drug had side effects so I spoke to my pharmacist and got a lot of information from her on both treatments.

I decided to try Lupron. My first shot was my last. I had more than just hot flashes. I had hot flashes, nausea, dizziness, anxiety, lactation, and insomnia. I’d cry at the drop of a hat. I was forgetful – I was going out of my mind. My family doctor took me off the treatment as well as told me to stop seeing the ob/gyn. She showed me a letter from him and it said that he told me that I could take Lupron, Danazol, or the birth control pill. Too bad I was already taking BCP and he had never mentioned it to me.

My family doctor then referred me to ob/gyn #2. I saw him for the first time in December. By this time I was searching the net for everything I could find on endo.

The ob/gyn told me that if the pain got worse he’d send me for a laproscopy at Women’s College. He put me on a new painkiller – Toradol, 4 times a day (10 mg each time). He wouldn’t answer any of my questions – just gave general answers.

I saw him a second time in January because I was in significantly more pain and the painkillers would only last for 3 hours, if I was lucky. He took me off the Toradol and put me back on Anaprox (550 mg, twice a day). I’d been on anaprox for over a year already and they no longer eased the pain. When I asked him about doing a laproscopy he said no point. He said I could have Lupron, Danazol, stay on the BCP and painkillers or have a hysterectomy. Talk about choices! When I asked about a hyst, he turned around and said that he wouldn’t recommend it at my age.

I had read in a book that a woman with endo has a greater chance of miscarriages and harder pregnancies and that it was also harder for them to conceive. When I asked what my chances of having children were, he said that endo made some women infertile but didn’t harm others. Once again only general answers were given. I left the appointment feeling frustrated, angry, upset and that I hadn’t received the help that I deserved.

Continued in Part 2.

This poem was written by Tracey Holliday and she has given me permission to post it on this website. She has a way with words and her poem has struck a chord in many of us who suffer. Thank you Tracey.

I’m Going to Shout & Scream, Until We Are Heard!

I want to shout out & scream.

I want everyone not only to hear but also to listen & understand.

I am sick of living in this shameful way,

And seeing so many others suffer the same.

But as much as I want to cry out & shout,

To let the injustice be heard,

There are still times when I hide & curl into my deep ball of shame.

I so want to be free of my slavery chains of pain,

Not to have to lie when someone asks how I’m feeling?

So often I just smile & say fine,

Putting on the mask,

Hiding in the lies,

Trying to convince myself & all that surround,

That all is well,

That I am fine.

Why? I hear you ask,

Because I want to be part of everyone’s life,

To take part in world around me,

The pain free world around me.

I fear that if all I tell is the truth

That friends will no longer want to know me,

Family will say she is never well, it must be in her head!

I mean I get so often told of those worse off,

And hey after all, I’m not dying!

There are those close to me though,

Who hear it in my voice or see it in my eyes,

They see through the lies,

Past the masks & still they are here,

Listening to my cries.

For them I am thankful,

For them I bless God,

They help me to carry on,

And seem to never tire.

Then there is my beloved,

The one who won my heart,

We stood there & said our vows,

In sickness & in health,

Both without knowledge of what were to come.

Within months of that day this nightmare took hold,

And slowly through the years ripped out parts from our hearts.

He still loves me & will always be there

But around with my pain I carry his despair.

I see it in his eyes

He is frightened to touch,

Frightened to hurt,

Afraid of rejection,

It’s not just killing me

But him as well

I just don’t always have the strength

To bear all this pain,

I want more for him,

I want better for us,

This wound goes so deeply

That I just can’t discuss.

I have to have hope,

Keep on with this world,

To reach out to sufferers,

To get us all heard!

It’s not in our heads,

We don’t make it up,

We live with much more

Than we ever will share.

Each carry our secrets,

Live with our lies,

You’ll just have to forgive us,

You’d not cope with our real cries.

All that I ask

Is that you’d just take a step back,

Not pre-judge

And to cut us some slack.

We all want to live,

Have fun in this world,

So give us a smile

And a comforting word.

Each one of us is special,

Have our own special gift,

Encourage us to share

And we will learn how to live.

We will grow in our confidence,

Break through some of our pain

And start to realize that we can live again.

We need to be hopeful,

To search for a cure

But each day keep living,

Feeling safe & secure.

With each rose come many thorns,

Try not to be frightened of mine.

Copyright 2001. Tracey Holliday

All rights reserved.