PERSONAL STORY: LIZ

I have had pain all of my adult life. There have always been times of remission but never complete relief. Many of you know all about that kind of pain. I did not know that periods were not supposed to cripple a woman and I didn't complain much.

My problems were found when I had my tubes tied after my second child. Childbirth was difficult for me. My surgeon found dense adhesions and called it PID (Pelvic Inflammatory Disease). From that point until two years ago, I had surgery every six months for lower quadrant pain.

My surgeon assured me that each surgery would be the last and finally diagnosed endo after the 6th. He promised a hysterectomy was a cure and I agreed to have it done; TAH/BSO.

4 months later another scope revealed endo on my upper iliac structures and ureter. I underwent lupron therapy for that which I go into detail about later. I suffered on with the same pain I had with my ovaries and uterus and now they were gone and the pain remained!

Two years ago, I went to a talented endocrinologist and a gynecological oncologist at Beth Israel for extensive lysis of adhesions encompassing all the organs I had left. My pain came back but not as strong until a few months ago but I did not treat it with meds. I do not take estrogen so I do suffer from hot flashes and mood swings and only calcium is on my med list.

I feel good not being on pain meds and lately the pain has gone away. I believe the talent of the last surgeons, faith, and a new attitude really helped. I want to tell you all that if I knew anything about endometriosis when I was facing such vital decisions as hysterectomy I would have done everything differently. But I learned too late. After the hysterectomy I discovered the Endometriosis Association and the Witsendo mailing list. I have learned about my disease for myself. I thank these groups and the hundreds of women I have had contact with.

Knowledge and fellowship have given me weapons in the fight against endo. It is my desire to allow no woman to be without the information and resources she needs in order to make vital decisions for her health care. Arm yourself with all you need to know to help your physician help you.

Personal Message

If life seems like a stressful burden to you I urge you to forget about the money and keeping up with the Jones' and turn your heart and mind to God. If you keep Jesus first you cannot help but be filled with peace and joy. Remember: Jesus is the reason for all seasons!

I don't think it could be disputed that beside hysterectomy, Lupron Depot is one of the most controversial therapies for endometriosis. I know women who say it is the best thing that has ever happened to them and others, including myself, who consider it to be poison and who believe it made their suffering worse. It is no secret that I am opposed to the use of Lupron depot in the treatment of endometriosis. I have based my opininion on my own personal experiences, information from the FDA and Tap Pharmeceuticals and the experiences of the many women who have shared their stories with me.

I urge anyone involved in Lupron in any way to contact the FDA and request information. I did and they were most helpful. Write to them via e-mail at CDEREXSEC@cder.fda.gov and they will help you. I also urge you so research what Drs. Albee and Lyons say about Lupron therapy and why they don't use it.

I will share with you my own experience with Lupron so I may explain why I am so against Lupron. I had a complete hysterectomy Nov. 4 years ago followed by another lap 4 months later when the pain returned. After discovering endo in places the surgeon felt it would be too dangerous to do surgery on, I was told I must go on Lupron to rid myself of what was left. I had rejected Lupron once before because I felt its risks were too great but this time was told the endo could not be left in me and I had no choice.

Right away, I noticed not only memory loss, but I lost the ability to think things through and to reason. I lost my personality and suffered bone and joint pain that felt like I broke something. When I complained I was told that for the first few months of Lupron the symptoms worsen. Let me get this straight. I was taking something for six months that makes things worse for the first two and in my case the next 24 months.

Nothing I have ever taken has made my body and self change so dramatically as Lupron. I quit after the 5th shot and believe that only in the past few months have my side effects begun to go away. Please know that TAP Pharmaceuticals and the FDA state that your endometriosis will return when the Lupron is stopped and it was only approved for one six month lifetime dosage.

Also, the FBI and FDA have now begun investigating Tap Pharmeuticals for its practices involving false statements and usage of Lupron for cancer and infertility. Lupron is one of the most important health decisions you will ever make; for yourself, your spouse and your future. Learn all you can. God Bless.

Liz
Love, Peace and Prayers from Liz