QuestionHi Angie,
I am very scared and did not know where to turn to so I was directed to this site. I hope you can help put my mind at ease a little bit.
I am 32 years old. Since I was 15 I had very bad pains with my period. For years I was told it was normal. All of the women in my family told me it was just something that happened to women. When I was 18 my Mother came into my room and found me curled up in a ball on the floor and I couldn't get up. That's when we started looking for answers. I was JUST told that I may have Endometriosis 2 weeks ago. I go in for exploratory surgery in 3 days. I did some research and know the basics of the disease. I obviously know the pain associated with the disease. What I do not know is what my next step is going to be after diagnosis.
I have read about hysterectomy, Lupron, birth control and other hormones. Just not sure what I should do. And I am confused about a Hysterectomy. Some sites say that it is a cure while others strongly state that it is not. What is true? I have spent the better part of 15 years looking for answers, and now that one is 3 days away, I'm not sure I want it now.
Thanks for any insight you may be able to give me.
Alecia
AnswerAlecia,
Congrats on finally getting some answers. This should make you feel good. I know it is a scary thought, having an incurable disease, but it is better to know than not. You should feel "vindicated". I know I sure did. I wanted to shout it from the rooftops because I knew something was wrong and all the while everyone just thought it was in my head.
After your "Lap", once your doctor sees that you do indeed have Endo, he'she will probably go ahead and laser some of it out. Do not be fooled into believing that laser surgery cures Endo, it is only a temporary fix if it helps at all.
After your surgery, your doctor will probably tell you to go on Lupron. Lupron puts your body into a fake menopause. And you will get the side effects that go along with menopause. Again, this is only a temporary fix. It is a treatment, not a cure. Lupron helps some women, some women get no relief from Lupron. Lupron also causes bone density loss. There is something called "Add Back Therapy" now which helps with this problem. Many women do not or did not like Lupron because of the side effects. This is something you have to jusdge for yourself. You can also try birth control pills.
A Hysterectomy does NOT cure Endo. This is a known fact now. Any doctor who tells you that it does....RUN.....FAST. I get so mad hearing from women who have been talked into removing their female organs and then they are back in pain a year later. And then the pain is all in their heads again because they were "cured".
Another step you can take is to see a specialist after your diagnosis. There are many who specialize in a specific kind of surgery called exscion. This is, in my mind, the closest we have to a cure right now. I personally believe it will be a cure one day when all the kinks are ironed out.
Endometriosis is not just on the surface...it goes deep into the organs. Laser surgery only lasers off the surface stuff. Exscion surgery is where they use "scissors" so to speak, and actually cut the Endo out. Women who have had this surgery are very thankful and claim to be absolutely pain free many many years later. www.centerforendo.com
I'm gad to hear that you have done research, this pleases me very much. More women need to take control and learn about this for themselves since there are still doctors around who believe things they learned 20 years ago. We need to arm ourselves with information so we are not taken for fools.
Very quickly, or I'll try to be, this is what happened to me.
10 years after dealing with severe pain, I finally found a doctor who diagnosed me with Endo. I had surgery and was told that he got rid of the Endo via laser surgery but I still may have trouble conceiving. I went on fertility meds. A year later, no children and sever pain again. I went back to the doctor, he did laser surgery again. No children and three surgeries later I was just using pain medication. (I also tried Lupron somewhere in all of this). Now, no medical insurance. Just recently, the specialists in GA would do my surgery for a reduced cost. I finally found my medical records that I never even asked to see and sent them to GA. My records showed that my tubes were completely blocked, I had Endo on my bowel and my appendix was completely bound down. The path report stated that my Endo was too deep and extensive to even try to do anything to help me. He left my tubes blocked (still no children to this day) and put me under two more times to do nothing and still charge me.
That is the short version just to explain to you how important it is to knowabout your own body and to get copies of ALL medical reports. Trust no one when it comes to your health.
Hope I was able to help.
Sincerely,
Angie
