For a week or so prior to my surgery I had been suffering severe pain in my stomach area and had gas.

August 20th – Left home around 7:30am to get to my 10:30am appointment with the anaesthesiologist. I got there and had to wait in a waiting room for quite some time before a nurse came and took me to a room where she asked me lots of questions weighed me and took my blood. She informed me that I was to be on a strict clear liquid only diet for the bowel prep. Saw the anaesthesiologist and he asked me a few questions about my health and what not.

Saw Dr. Lie in the afternoon, I managed to move my appointment up from1:45pm to 12:45pm. He was quite friendly and in a much better mood. Michael was with me and asked him a few questions. I got the information on the bowel prep so from Monday noon until Friday evening I had nothing but clear liquids.

August 22nd – Left home at 5am to be at the hospital for 8am. Was really nervous and didn’t want to have the surgery. Michael stayed with me right up until they took me in. Met a different anaesthesiologist and his assistant and they took me into the operating room. Dr. Lie told my parents and Michael that he removed a lot more endo than he was expecting and that is why I was under for so long. He said that he removed everything that he saw and that if I followed my diet and exercised I’d be fine for quite a few years. I took a long time to wake up from the anaesthetic and didn’t wake up until about 3pm. The nurse tried to get me up to go pee but when I sat up I felt nauseous so they gave me another bag of gravol in my IV. Finally woke up from that around 5pm and spent from 5pm to after 8pm trying to go pee. Finally the nurses had to put a catheter in which I didn’t want but had done. They put it in and pulled it right out. Nothing happened while they had it in so they concluded I was very dehydrated and that I was to stay at the hospital all night. I told the nurses that I had to pee and the nice one told me that it’s just because my bladder and such had been irritated but she let me sit on the toilet anyway. I managed to go pee so they finally let me go home.

I wasn’t feeling too bad that night, just suffering a lot from the gas from the surgery.
About 12 hours after we got home and I had a little bit of sleep, I was out of bed and moving around and doing stuff (I shouldn’t have been but I was bored of staying in bed). On the Friday I tried to vacuum my sister’s bedroom but Michael wouldn’t let me.

Since the surgery I have never felt better. I have no pain, except from the incisions and the surgery itself and I have actually slept all night long. I am hoping that things stay how they are so that I can enjoy a normal life for at least a year or two.

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