need advice/endo

Hello,

Last week I was taken into surgery, thinking I had appendicitis. Turns out I have severe endometriosis instead. My one ovary was cemented to the wall of my uterus, and the Dr removed it along with a quantity of blood.

He is already thinking that I will need a complete hysterectomy, because of the damage already done to my system. I have "suffered" since high school with symptoms, but have be told...DEAL WITH IT. So now i sit here recovering from what I have gone through so far, and wondering what comes next. I could use the advice of someone who has been there done that.

Thanks

C

Hi cmkr! Welcome to the site!
I am sorry that you have been diagnosed with endo. I found out I had endo after I had a lap and hysteroscopy to find out why I had been bleeding for two yrs that no b/c stopped. Until that time, I had never heard of endo. During my lap, my surgeon cauterized all the endo he could see, except for what was on my uterus--it was covered--and my bowels--too dangerous.

Depending on your age, symptoms, and stage, there may be some options for you. However, there is no real cure for endo unfortunately. And any estrogen your ovaries produce, feed any endo you have. If you have your ovaries removed, you may or may not be able to take HRT to combat your surgical menopause symptoms.

Therefore, please research endo as much as possible. Seek at least a second if not third or fourth opinion before having a hyst. Be knowlegable about your symptoms and your options. Find out what you can about HRT as well.

Here are some links we have here at the site about endo: http://www.hystersisters.com/vb2/link.php.

Best wishes to you! I hope you find support and information here at the site!

CMKR,
I am sorry you had to have surgery only to find out you need more surgery!!! This site is awesome! There are so many helpful ladies out there! Hugs Raymo

HI

I'm so sorry to hear of what you have gone through and that you have been diagnosed with endo. I had my hysterectomy for endo, so I understand some of what you may be going through.

Endo is a very complex disease which some doctors do not completely understand. Reading and researching as much as possible will help you make some informed decisions along with your doctor.

One thing for sure is that the endo needs to be treated. It can cause many serious problems with the rest of our organs and can be very damaging. I ended up loosing part of my bladder due to my endo.

There are some different things that can be tried before you have to make a decision about having a hysterectomy. A hysterectomy has been very successful for many women, but there are some women that still have problems with endo even after hysterectomy.

Much of it depend on where the endo is located, the depth of the endo and weather or not the doctor can successfully remove ALL the endo at the time of surgery.

Here are some articles that may be helpful to read.

Progesterone to treat endo

Medications to treat endo

Mirena coil for endo

Your doctor can also perform a laproscopy to remove the endo which may provide you with years of pain relief. Surgical excision of the endo can very successul.

It may be very helpful to get another opinion before making a decision. I have read that doctors have very different approaches to treating endo. My doctor was very aggressive and used many precautions to help rid me of my endo.

Best of luck

I wanted to mention a book written by Mary Lou Ballwig of the Endometriosis Association called "Endometriosis Sourcebook". It goes in to depth about the many treatment options for endometriosis, such as Lupron, birth control/progesterone, surgery, hysterectomy, acupuncture, etc... It even describes the different surgical techniques used to remove endo lesions during a laparoscopy. Thought this might be a good place to start with your research. You can find this book at Barnes and Nobles or at many local libraries. Just do a google on it on the internet and you'll get more info. I have read it myself when I first learned I had endometriosis and found it very informative. Hope this helps. Best wishes to you in whatever happens!

c ~

I've had endo for 16 years diagnosed and I have suffered since I was 15.

I remember being told to deal with it too. I've even had people tell me I was making up what I was going through.

As for treatments for endo. There are alot of them. I have had 4 laps and 1 laparotomy. I have used birth control pills, depo provera, lupron, and danocrine. I have also used herbs and natural progesterone cream.

My two biggest suggestions to you .. Do as much reseach as you can about endo and the treatments. Find the best doctor in your area that knows about endo and the treatments.

If something doesn't seem right with a treatment or option question it, trust your gut.

Feel free to email me. I will help you with what I can.

Sharon