Endo found 4 years post-op

Hi there
I had my TAH on Nov 28, 2000. No mention of endo from pathology report. Jump to Sept. of 2004. Had a baseball sized hemmorhagic cyst removed from right ovary(done by Dr. who comes in on weekends to fill in every once in a while, and at a different hospital from when I had my TAH). No mention of endo from pathology or surgery report. January 7, 2005, had a laparotomy for RSO(tried laparoscopic, but prolapsed fallopian tube, scar tissue and adhesions sticking everything to abdominal wall and vaginal cuff, and to each other made this impossible) found endo.
Drs. are baffled as am I. Both my gyn and the gyn (my Dr. weekend off) who did the surgery said that endo shouldn't grow that fast (4 months).
I have two half sisters (we all have the same mother) who had hysts because of endo, so I guess it does run in the family.
My gyn did tell me that when it is in its microscopic stage, you can't see it.
My questions are these: Did anyone else have endo grow so quickly?
Did anyone end up having both ovaries removed because of recurring endo and how long between your surgeries to take the ovaries?
Any input would be greatly appreciated.
Thanks in advance.

endo can grow very quickly

iN jan 2004 I had my hyst and th eovaries were normal so we opted otmleave them in . There was only one small cyst

By september one side had blown up to the size of a small mandarin oarange

its triggered by hormones so Im not ata ll surprised

(((HUGS)))

mei

Hi,

Just thought I'd share my experience with you.
I had a STAH in Sept. 2002. At the time there were no visible signs of endo, however my cervix was adhered in its place and was left in...but because there was nothing obvious I was told that there was no endo. One year later I had to go back to have my left ovary removed. It was covered with endo and had a huge endometrioma on it. I was supposed to have my cervix removed with that surgery, but again it was left in. My doctor found endo behind the cervix and lasered it away thinking that would end my problems of the dreaded mini period (although mine wasn't so mini).
Now it is one year since that surgery and I have been diagnosed with stage IV endometriosis with it invading through all the layers of my bowel. I have cyclical rectal bleeding and still have full periods. I am going for surgery Feb. 28th to have my cervix and remaining ovary removed as well as having my endo excised. I will also be having a bowel resection to remove the affected area. My endo has also grown into my vagina. I may also need a slight vaginal resection to clear the area of all endo.
So in answer to your question.....YES, I have endo grow after my hysterectomy and with a vengence!!

I hope you feel better soon.

Karen

Essie,

I don't have any experience with recurring endo even though that was the reason for my hyst. But I just wanted to pop in and give you my support. What is the next step with you since this finding? Please keep us updated.

Karen,
Oh my gosh!!!
I am so sorry for everything you have had to go through. I hope if the oversight is with your Gyn it is not the same one who keeps dragging this out. Or is is just that the endo keeps growing and is not present each surgery?
I will think of stories like yours and always remember that there is always someone out there who has it worse than I THINK I have it.

I hope all goes well for you. Hang in there and keep us posted.
Shireen

Hi Shireen,

My gyne who did my initial surgery actually referred me to the doctor I am seeing now. I am seeing a gyne-oncologist now to do the next surgery, and have to travel to see him (2 hour flight). I live in northwestern Ontario and have to fly to Southern Ontario to see this doctor.
I am not upset with my gyne for where I stand now. I agreed with everything he has done as there were no visible signs of endometriosis with the initial surgery.
Hindsight is 20/20 and if I had to do things differently I would but I tried the conservative approach and unfortunately it didn't work with me.

I just hope my unfortunate experience can bring some answers and insight to other sisters out there.

Best wishes,

Karen

Thank you everyone for your answers.
Mei, thank you for the hugs.
Karen, I hope you do well with your upcoming surgery. Thank you for replying.
Hi Marian!s We hope that my problems are finally at bay, but only time will tell. I was told where I still have my left ovary, the endo could come back. I go back to the Dr. on Feb first for my post-op and to see when I can go back to work. She is going to check for any remaining granulated tissue at that time also. Hopefully, I will get a greenlight on all issues. I will keep you posted.

On another note, I hope all sisters who are dealing with the blizzard are fairing fine. We are expecting up to 18 inches of snow. So far people are staying of the roads, as the scanner is very quiet. We have about 5 inches of snow on the ground now, but we aren't in the thick of it yet.
Have a nice day everyone!!s to all
Essie

I hope you do get the greenlight!
Please let me know

Hello,
Wow, your story sounds slightly similar to mine. TAH with removal of left ovary 4/97, then in 4/02 removal of right ovary and adhesions and in 12/02 removal of ovarian mass where right ovary used to be. I have been told several times I have no pathology of having endo, however all the symptoms. (painful intercourse, painful bowl movements, and severe pain on the right side) One theory is an ovarian remnant and I continue to grow cysts and pelvic masses but have no more organs in there.
The only success I have had so far has been Lupron injections, last year which resolved a mass that was found. Now I am on my 2nd round of Lupron and not handling it well. In August 04 another mass was found and we decided to just manage the pain in hopes it would go away, of course all along, not adding Estrogen (fuel to the fire)- I got frustrated and began Lupron the 1st week of December.
I do not want any more surgery, I just want to feel better. Oh and all of this started at age 26.

Hi I am sorry about this. Endo is most often not on your reproductive organs it is only confined to them about 5% of the time. It is very common post hyst. You need to remove the endo not just the ovaries. Removing the ovaries without cutting out the endo might not help at all.
Here is a good link that answers many endo questions and explains most doctors common mistakes in treating it.
www.endometriosistreatment.org

Carrie