Thursday, February 4, 2010
Endometriosis
Yes, I do know what endometriosis is - unfortunately. I have it and it's not pretty. It's one of the most misunderstood diseases out there, and I think most people don't know what it is, although so many people have it. It's incurable and not always manageable. My disease happens to be one of the unmanageable cases and one of the worst cases. I'm in chronic pain, agony and have not responded to any of the treatment - at least not significantly enough. I've been forced to make some serious decisions and will be having major surgery next month (more on that another day). I'm mostly mad that there isn't more research being done to cure this disease and I hate to say it but I have to suspect that it has something to do with it being a woman's disease and probably politics too. I'm sad that people are suffering, most of us have pain to some degree and oddly enough some people who have it don't have any symptoms. Symptoms and pain don't always correlate with the stage of the disease, which I find very interesting. So many questions, no answers.
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15 comments:
well, that is horrible news! best of luck with the surgery with hopefully a speedy and successful recovery!
When I was 24 I was diagnosed with severe endometriosis and told that I would be infertile by the time I was 30. Major surgery "was my only hope".
I decided that I was too young to sacrifice my "womanhood" and lived with the debilitating pain every day.
5 years later I fell pregnant after every doctor told me I would never have children. 18 months later, I was pregnant again.
There is always hope....
Good luck :)
this doesn't sound nice at all! my heart goes out to you. you're in my prayer. for relief, for the surgery to be successful, for some answers...
Thank you so much. :)
Thank you Shadow & Kay, you are very kind.
Mom, Lover etc....I'm supposing you no longer had excruciating pain after having your children?
and there is hope, hope for the opening of new doors.
Oh, my. I arrived to bad news. Have you tried diet to control the disease? Check out this link: http://www.endo-resolved.com/diet.html
Also, order a copy of the book Sugar Blues.
Doctors don't want us to know that a good diet can not only prevent us from getting diseases, it can cure us.
Hope all turns out well for you.
Sorry to read you are unwell - I had similar when younger, although i enjoyed good health in every other way and had major surgery at fifty - it was the best thing to get done and I so wished I had done it before - much better to not have to worry about other nasties too as I got older. I sincerely wish you better very soon and I would recommend getting surgery done. It is so not good to suffer as you are doing. My very best wishes to you Noelle
Noelle, I'm so sorry that you are having to go through this. Be strong. Not that I know anything about endometriosis, but don't believe doctors when they say there are no alternatives to surgery - most of them refuse to look at anything outside of the realm of "traditional" medicine. Explore all your options. Be your own advocate.
Love and blessings to you, sweetheart!
I hope all is well soon! Take care!
Many years ago my doctor thought I had Endometriosis, but it turned out to be ovarian cysts which were removed laporscopically, twice. I had so much pain but eventually realized it was the 'pill' causing them and they are supposed prevent cysts and what not. Not true in my case... I listened to my body and what it was telling me and never took birth control pills again.
I am sure you've done all the research. I hope you will try different techniques for the pain and that surgery is your last option. But if need be you will do what is right and hopefully you will become pain free.
and you're right not enough is done and years back it was virtually unheard of just like HPV virus, and it is so common now and now is tested for annually.
hugs and love,Noelle~
Calli
Thanks everyone! It's great to know your good thoughts are flowing across the world for me. Yes, I have explored all of my options but have not stopped as of yet...I'm reading up on new things and looking into some eastern medicine.
Calli, I had the laporoscopy last year which is how they confirmed that I had it but they could not reach all of the endo by laser..it's on my uterus... so here I am!
sorry to hear about this, Noelle. Sure seems to be a lof of these illnesses still around with no fix. Hope well being for you. ~rick
I hope your better soon.
I read your post and relate because one of my daughters has endometriosis. She has some very difficult decision to make concerning her treatment. She has already had microscopic surgery and the doctor wants to do the surgery again after only three years. She suffers as you do from the symptoms. Thank you for putting the subject out there so others could stop and think about those they know who suffer from this disease. You have provided some insights for me.
@jodeeluna...please send my best to your daughter. I hope that she finds peace with whatever decision she chooses. It's very tough. I am still recovering from my hysterectomy and there's some heavy grieving that goes with it as I have no children and now never will. Also, I had a second surgery three weeks later because I was hemorrhaging so bad - I could have died. Please feel free to contact me if you have any questions or just want to vent - that goes for you and your daughter. It's a disease nobody talks about and we need to get it out there.
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