Still Suffering with Endiometriosis

Hi-

I had a total abdominal hysterectomy with everything removed in November 2005. I have had 2 laparoscopies since my surgery for endiometriosis.

Is there anyone out there who still suffers from endiometriosis after their total hysterectomy?

Hi

Me too! I had everything removed in December 2005 due to endometriosis and mine too looks like it is coming back. I've got an appointment with an endo specialist next month to get it confirmed but by gynaecologist thinks it is the endo coming back. If you don't mind me asking, was the laparoscopies just to have a look or did they take the endo away. Forgive me for asking but it looks like I may be having another one soon.
Take care and I hope you feel much better soon.

My endiometriosis was removed with the laser. However, since I had the same type of endiometriosis as you it may take awhile for it to get out of my system. It is hard having to wait and see if the pain returns. It has been a frustrating experience since you assume after your hysterectomy all of the other issues are taken care of!

I know what you mean. I had hoped that the hysterectomy would have dealt with it all and that I would be free of hospital appointments and the threat of more surgery. I only had two weeks to wait between finding out I had severe endo and the hysterectomy as I just went in to have an ovarian cyst removed so I never thought it was going to be a long term issue - how wrong I was! Let's hope that we get some answers very soon. Please let me know how you get on.

I have read that the only way to completely eradicate endo is to deprive it of estrogen. It essentially feeds off of the estrogen and without it, it will die. Typically it is suggested to starve it of estrogen for about 6 months. Hope this helps!

I am so sorry you are still dealing with endo pain after your hyst and BSO. Unfortunately there is no cure for endo, only treatment options.

If at all possible, visit with an endometriosis specialist. They typically are aware of the latest treatment options and are very skilled at removing endo from the body. Many endo specialist use surgical excision or vaporization as an effective way to remove endo from the body.

Estrogen does play a role in feeding endo, but endo has even been known to make its own estrogen supply so removing your ovaries and not using estrogen replacement does not always starve endo that has been left behind. It is wise to discuss your hormone needs with an endo specialist.

There are medications to treat endo and some women try a special diet for endo. You may wish to talk to your doctor about these options.

We have many Endometriosis Resources you can read through to learn more about endo, but your best option would be to see an endo specialist.

Weiser-

Thank you so much for the information. I agree with you and will look at the resources you mentioned. I am glad to know that I am not the only one who suffers from this disease even after a total hysterectomy.

It is hard to believe I can still have endiometriosis even when everything (including cervix) have been removed. It has been attacking my vaginal area, bladder and intestines. My last laparoscopy on Jan. 12th, 2007 was so painful that my recovery was longer than usual. My friends here are at a loss on how to help. Then, I remembered this site in helping me get through the first few months after my hysterectomy and how it has helped me.

I know that removing the estrogen is the key, but I think you are right that endiometriosis can make its own.

I have been having my own hormonal struggles in my body dealing with estrogen. I do know I need it, because without it I become severely depressed and do not feel like myself. I am 34 years old with 3 children ages 6,4, and 2 who need me and I need to find a way to get back on track.

If you have any other resources, can you help?? or, let me know if there is "private" chat room we can talk.

Thanks!

Leslie

I was wondering this. I thought I was going out of my mind. I am experiencing the same symptoms prior to having a total hysterectomy; which I had in 2003. Could it be possible that the endometriosis could be coming back?
Annette

Me too. I have had my 2nd surgery to treat endiometriosis since my hysterectomy. I was told by my doctor that endiometriosis is hard to detect and it could take time for it to go away. I am taking progesterone, but it has not helped. But, I am on a new one this time.

I am so glad to know I am not the only one suffering. I am researching more about endiometriosis after a total hysterectomy. Some people think I am making up the pain just to have surgery. But, that is not the case. I have been suffering from endiometriosis for a long time and know now it is a disease without a cure right now. When I had my TAH in Nov. 2005, I was told I had stage 4 endiometriosis. I also had fibroid tumors, many ovarian cysts the size of a cantaloupe, etc. I just hope that someday, I willl get better and the endiometriosis will be gone.

Despite the above, I keep thanking god that I was able to have 3 wonderful children. My doctor said I beat the odds despite my female problems.

Hang in there and just be glad there is this forum to help us out!

Thank you! I am really glad there is someone out there that is feeling the same way I do. I thought I was the only one or I thought maybe it was all in my head. Thank you again!
You hang in there as well.
Annette