Monday, April 13, 2009

Hospital Appt Update - April 2009

I had a hospital appointment on 9 April 2009. The outcome is that I am allowed to continue with Zoladex for another 6-9 months. The long-term outcome is more uncertain. I am glad that it does mean I can safely complete my MSc period and therefore pain-free, otherwise that could have been disasterous.

The endo-nurse at my hospital clinic will also be making an appointment for me to have a bone density scan on or before my next appointment in October 2009. If my bone density is 'normal' it is more likely I will be able to remain on the Zoladex.

So my future is secure for now. My long-term future remains more uncertain. The contraceptive pill does not work, the coil doesn't work for me, neither does Depo. Surgery works for a short-time only. I have to hope that the doctors see common sense and allow me to remain on Zoladex. At my next consultation, which I hope will be with a consultant again, rather than a junior doctor, so I can also mention my recent diagnosis of having Joint Hypermobility Syndrome, and whether this has an impact on the pain I experience with endometriosis.


Maria Therese said...


How are you doing? I just spent a long time reading your blog and my heart goes out to you.

My name is Maria, I'm 42, and almost two years married. I was diagnosed with endometriosis stage four on Feb. 12, 2007 at the age of forty one after open stomach surgery to get rid of two ovarian cysts (which turned out to be endometriomas).

My first surgery did not get rid of the endometriosis, pain, or infertility problems. I heard about something called Napro Technology, found a website in the United States, and a Napro doctor in my state two hours away. I am so happy I found him! He told me that endometriosis is an auto immune disease. Through charting my cycle naturally through the Creighton Model, giving me a prescription of Naltrexone, taking vitamins, losing weight, and restricting dairy and meat in my diet the pain has lessened. My Napro doctor also directed me to a good surgeon who is an endo specialist who performed a laparoscopy on me April 1st 2009.

During my post op visit I asked the surgeon what are my chances of a re-currence and he told me "low". I have also bought many helpful books on treating endometriosis and preventing re-currences through diet and exercise. You may find more information on some good endo websites and books on my blog, if you are interested.

I also have the link to a website based in Europe, which I am hoping will help you.

Here's what I have learned about endo so far:

1) It is an estrogen dominant disease. Most doctors try to treat it with birth control pills, which contain estrogen. Why would they prescribe something containing estrogen to someone with an estrogen dominant disease? It doesn't make sense!

2) Endo is also an auto immune disease. Us ladies with endo need to encourage our immune system to work better.

3) If you have endo and have cysts, some doctors will drain the cysts (endometriomas). This was done to me during my first surgery. Both my Napro doctor and second surgeon told me this isn't how you properly treat endometriomas. If you just drain them, they will grow back (Mine did again on both ovaries and they were removed the right way - from the pelvic wall- during my second surgery). However if you remove them from the pelvic wall, they will not grow back.

3)Taking progesterone pills, suppositories, or cream can help treat endo. Many of us ladies with endo have a hormone imbalance. I was diagnosed with low progesterone and prescribed suppositories, which help me so much.

I am hoping that my post will encourage and help you too. I suffered from endo for many years, but until last year, I did not know I had it. I thought having painful periods on every day of your period was normal. Several years ago before I was married I told my doctor I had painful periods and she responded "Take three Aleve (an over the counter pain medication)!"

Sadly, many doctors do not recognize the symptoms of endometriosis. Mine didn't.

I really hope I have helped some! You are in my thoughts and prayers!

Hope to hear from you sometime! Maybe we can help and encourage each other?

Thinking of you!

Your Endo Sister in the United States,
Maria :)

Anonymous said...

Hello there. I just found your website. I'm in the second month of taking synarel for my endometriosis. I'm in the US and I've never heard anyone speak of stages of Endo! I have had 4 surgeries, the most recent dealt with taking my appendix out as it and the rest of my digestive system is covered in endometriosis and endo implants.
Glad I found your words.
There's also a podcast which talks about it,