Endometriosis??

Question

I am 25 and had a hysterectomy plus removal of both ovaries nearly 2 years ago due to severe endometriosis. Unfortunately the hrt has flared up the endometriosis and it is back to being severe. After trying all the hormone treatments my consultant has suggested radiotherapy and chemotherapy to kill it off. This is a radical treatment and was wondering if anyone else had been through it? The endometriosis is rotting all my organs so I am happy to have it. xx

Answer 1

First of all, if you have any DOUBT about the recommended treatment, get a second or even third opinion.
I am 28 yo, my endo symptoms first appeared at 12 y. At one time I was the leader of an endo support group.. I educated myself on endo because my doctors could/would not.
What do you mean that the endo is rotting your organs? I have never heard of that. Of course endo can implant anywhere in your body, and definately on organs..
The best treatment for endo is removal by a skilled endo dr. The implants must be removed by excision, not by burning or freezing the implants.. If the implants are frozen or burned off, the dr can not see if he/she removed the complete depth of the endo. I see another response that gave a list of sites to check out. Dr. Redwine is one of the leading endo specialists and I have heard Great things of Dr. Cook. Please educate yourself on endo and don't just take your doctor's word for it. If you have any questions or want to talk, I will be more than happy to give you my email. Take Care hon.

Answer 2

Endometriosis persists after hysterectomy because hysterectomy removes organs, not necessarily disease. Any implants left behind in the abdomen will continue to thrive in their own self-sustaining life cycle (it matters not if the ovaries are removed), because the implants themselves produce an oestrogen-synthesizing enzyme called Aromatase.
I add some links which contain details

http://www.endocenter.org/aromatase.htm

http://www.endocenter.org/EndoPPF.htm

http://www.endocenter.org/endofaq.htm

http://www.endometriosis.org/aromatase.html

http://www.medscape.com/viewarticle/473018

The key to successful treatment of Endometriosis lies in true excision, which the surgical dissection and meticulous removal of all disease - from all locations, including bowel, bladder, etc., which many surgeons are reluctant to treat and simply leave behind. True specialists, however, such as those below, are able to intervene laparoscopically and thoroughly eradicate all disease:

http://www.endometriosissurgeon.com

http://www.centerforendo.com

http://www.endoexcision.com

Without surgery, there is no way of truly diagnosing whether or not Endometriosis is still present. However, it sounds as though it may well be. You know your body best and know the symptoms you have suffered from previously; if you and your doctor suspect Endometriosis, you are probably correct.You would be advised to consider seeing one of the above specialist centres or at the very least, getting a second opinion from any of them by going through their records review process before undertaking any of the options that you mention. Endometriosis recurs after hysterectomy in women who did not have the disease excised in more than 40% of cases within 5 yrs. [Accreditation HealthCare Commission stats].
Hope this helps
Matador 89

Answer 3

I just found out I may have endometriosis, and have read quite a bit on it. Everything I have read says that a hysterectomy does not cure endo, because the endometriosis can be all over the abdominal cavity.

The only way to truly remove endometriosis is laproscopic surgery. Radiotherapy and chemotherapy is for cancer! Endometriosis is not cancer! I really think you should get a second opinion. I'm very sorry that they gave you a hysterectomy at such a young age.

Answer 4

I found out 6 years ago this July that I have Endo. I have done every type of medicine you can imagine to try and get it under control. My doctors have brought up doing a hysterectomy, but I have yet to agree to them doing it. The last time my doc and I talked I was told there was a 50 50 chance of the pain returning and the reason for that is if they don't get all of the Endo implants out during surgery, they will continue to cause the pain. And for me those odds aren't very good. I would see a 2nd or even 3rd doctor before you agree to Chemo or radiation. I have never heard of those two being used to treat Endo.

Good Luck

Answer 5

Get a second opinon to make sure the hysterectomy was complete. My mother in law had endo flare up and discovered that they did not remove part of an ovary. Everything, even small amounts of ovarian tissue, must be removed.

Answer 6

I had mine at 30 for the same thing. I thought once you had a complete hysterectomy that it was supposed to take care of it. I have never heard of any one any more problems once this was done. I think you need to go to another Dr. to make sure this is what it is. My Dr. said that this would completly solve the problem. It has 19 years since I had it done. Mine was a sever case. My sisters was too. her's has been 21 yrs.

Answer 7

You really need to read "Endometriosis Bible & Violet Protocol" by Zoe Brown (also available in electronic format here: http://www.endometriosisbible.info ). It's about how to eradicate endometriosis disease forever. It worked for me, you will see results in only a matter of weeks. Good Luck!

Answer 8

so sorry to hear this, ive got PID so i understand how you feel...i would go and get a second opinion cos i found the first dr i spoke to didnt even have a clue what was wrong with me for a start. a decent dr will know exactly what can be done now to help you, which i hope they can. good luck