02 August 2009

Lets start at the very beginning

Maria said that the beginning was the "very best place to start" so here goes............................... As a teenager I always had a very difficult time with my period every month (or when it actually decided to arrive). At 16 I developed pains that the doctors thought was my appendix. Well once I was admitted into the hospital and on the table the doctors discovered that I had a cyst the size of a grapefruit on one of my ovaries. From that day onwards my trouble only increased.

When I was 19 I the I developed increased pain and cramps and also break through bleeds even though the doctors had put me on the pill to try and control my periods and all that came with them. This continued on for about a year before I decided that my GP didn’t have a clue how to help me and I went to a Gynaecologist. He had me in the hospital within a week and had diagnosed severe Endo. I was out of the hospital the day after I had the Laparoscopy and a D&C.

I was taken back to the emergency room the next day with severe uncontrollable pain. After a week in the hospital on antibiotics, for an infection that they couldn’t really define. I was discharged and ok for about 2 weeks when I was taken back to the hospital again in severe pain. During this two week period I celebrated my 21st birthday.

After going back to the specialist, he told me that he was not able to explain the pain that I was in as he had removed all of the visible Endo. He suggested that I obtain a second opinion.

At this suggestion I sought out another doctor for this opinion. The new specialist proceeded to do another laparoscopy to diagnose the earlier said endo. After this second surgery I had two episodes in the following 3 months where I had to be admitted into the hospital in severe pain. This new specialist told my mother that I was a 21 your old girl who was looking for drugs and attention. Needless to say I never went back to him.

Through my work I found out about the Endometriosis Association here in Australia. Through this group I was able to see one of the foremost doctors in Melbourne.

When I went to visit him for the first time he sent me for a scan that was conducted at a specialist woman’s ultrasound clinic.

After the scan we went back to his rooms to get the results from him.

The first words out of his mouth were, "I have good news and bad news".

Well the good news was that there really was something physically wrong with me. It was not all in my head. The bad news was that it was not treatable. Adenomyosis. This was th term used. What it is, is a type of growth that the grows within the muscle of the uterus. It takes on its own blood supply and grows. The only sure fire cure is a hysterectomy.
At 21 I wasn’t ready to make that decision.
I opted to try a number of hormone therapies with disastrous effects.
Excessive weight gain was possibly the worst. Bad bleeds, excruitiating pain and swelling. I opted for a Laperotomy. I was told that this would give me 3 weeks to 3 years before I might need more surgery, but the doctor could not give me a certain.
When the doctor went in he was very surprised at the amount of disease. Both endo and adenomyosis. After over 3 hours of surgery I was done.

At 4 weeks post surgery I was back in the doctors rooms in more pain than before the surgery.
After another scan, we found that the disease had grown back. It was now my call as to when I would have further surgery.
After 2 months I called the doctor and booked the hysterectomy in for 6 weeks time. The decision became an easy one once I started thinking about taking my own life. Such was the physical and emotional pain that I was enduring.

When the doctor had finished the surgery and came out to speak to my parents he said that he could not believe how far the disease had progressed in just 5 moths since he was last in there.
Unfortunatly when I woke up from the surgery I aspirated into my lung and ended up in ICU for 4 days. I had last approx 80% of my lung function.

Just another hiccup on the road to recovery.

I am now 34 and 12 years post hysterectomy.

I am please to let you all know that I am married now for 3 years and very happy. My husband is a very understanding man. I think that you would have to be to take me along with all of my baggage.

We are now looking at starting a family and surrogacy seems to be a logical choice for us.

I promise to keep you all informed of our progress and to give you an insight into our life……………..and will not post such long posts in future.


  1. WOW...what a story! You have been through so much. I believe you have chosen the right path and you will have the family you dream of someday soon.

    All the very best of luck to you in your personal journey!

  2. Gosh, you really have an amazing story to tell. We hope this next chapter brings you the joy you are both seeking...

  3. Caryn, while I didn't have all of the horrible medical issues you did, I was born without a uterus. I am grateful everyday for a husband that saw all of my emotional baggage and wanted me anyway--so I really get that. Just remember that medical issues and emotional baggage aside, he's getting a good deal, too!

    I look forward to hearing about your journey. I hope and pray that you end up with a daughter (or son, obviously) as perfect as ours!

  4. Welcome to blogland - your blog looks great. I still can't figure out how to make mine pretty after blogging for nearly a year!

    Wishing you the best for whichever way you decide to pursue your baby dreams.

  5. thanks for your comment, caryn. whereabouts in melbs are you?

    lets hook up!