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Emily1
11-12-2006, 03:10 PM
Hi,

Well I suppose Ill try to kick off this thread.

Im 31, have had endo since approx age 20. I didnt find out what it was until I was 29 and a doctor finally did surgery on me. Up until then it had been misdiagnosed as ovarian cysts and I was told there was nothing to be done....

I had been put on depo provera at age 17 after I had to have surgery for a ruptured ovarian cyst. However before that I had never had any symptoms of endo and after that it began while I was on the hormones. At about age 21 I wanted to stop the depo provera so I did although I must say it was difficult.

At age 22 I was so desperate with this supposed ovarian cyst pain that I went to a natural doctor who gave me homeopathy. When I asked when I would need another dose she said it could be 5-6 years and to return when the symptoms came back. I laughed at her literally as I walked out. yea right like a couple little pellets was going to fix what I had been suffering, to an extent I had asked doctors to remove my right ovary.

I was fine for 7 years to my surprise, the pain stopped and I had no further problems with it. Until I was 29 it hit me with a vengence. And by this point it wasnt just the same old bad "ovarian cyst rupture" pain it was nearly constant. After a year I happened into a good doctors office who quickly did surgery and found not only endo but also adhesions which he removed.

I have refused hormones ever since but still have considerable problems with the endo. Having the adhesions removed helped a lot and that relief continues so that I am not in constant pain. Right now I have to be careful around my periods to not tear something and start bleeding internally. But if I do which I do tend to do, I have morphine sublingual to give me some relief. Because I am poor I can not manage to get another surgery. I will not go on hormones because it didnt stop the endo before and in fact I didnt even have endo symptoms until after I was on the hormones to supress ovarian cysts!

Whats helped me with the endo the most is surgery and what I have recently done again is homeopathy. Of course homeopathy can be a bit hit or miss but for whatever reason this doctor sure did a good job on me. I went back to her 2 months ago and had another dose done. I have made it through !two periods! now quite well. Once again I am surprised and quite happy. I havent made it through two periods without a severe episode in over 2 years.

I hope to see this forum get active :).

katiesnote
05-20-2009, 03:19 PM
I have read several of your posts. Very interested in hearing more. I am 30 years old and was diagnosed w/ endo at age 17. I have unsuccessful surgeries and have had chronic pain for nearly half of my life. I was diagnosed with Lyme last July and was put on a rigorous treatment program. My tests were “negative” within main stream medicine, but my doctor sent it to a laboratory that said I was 98% specific, and 97% sensitive, which essentially means “positive.” My doc believes that my endo is aggravated by the Lyme. I am not sure of the connection and do not fully understand it. I do know that I am presently experiencing what was mentioned on this message board – I stopped my antibiotics about two months ago, and have since had the worst pain of my life. My body is having some crazy reactions and I am not sure why. I would like to discuss this with others who will understand. I would like to talk to a doctor about this, but I have almost given up hope on my doctor. I was advised to begin something called the Cowden Protocol, which is “drops” of herbal supplements. It is very expensive, and after paying nearly 20k out of pocket this past year for my doctor and the tests I had to take, I am pretty much over anything that is not 100% guaranteed.

Thanks in advance,

Katie