Endo after Hysterectomy and Oopherectomy

[size=2][color=Purple][font=Comic Sans MS]Hi Everyone,

First, I'm heavily medicated so this might not flow very well and it might seem random. Anyway, I don't think I've posted here before, maybe once or twice, I don't really remember.

My name is Katya. I have endometriosis and in a week I will be having my fourth surgery trying to get rid of it. I've already had a hysterectomy and oopherectomy and even after that the endo has come back strong and hardI'm so medicated that it's hard for me to remember and read up on ever rule.. This will be my third surgery in one year trying to get rid of this endo. I'm on heavy pain killers, dilaudid, and I've been in bed over a week now from pain and then the pain killers so I've been playing with my website, since that's all I can really do. I'd like to share it with everyone. I'm pretty proud that I could make it, I'm trying to keep a little productive so I've been teaching myself how to work with Flash.

Anyway...I've had to cancel my life again. After my oopherectomy, where they found lots of endo, I believed I was better and that it couldn't come back. So, I went back to work, started school full time, started volunteering for a non-profit that helps survivors of childhood sexual abuse, started meeting new people, started a dance class to begin putting my body back together. And then, it all came back and I'm back in bed and have had to drop out of school and can no longer work etc. I'm so disappointed! It worries me that I'll never get rid of this endo. I frantically searched for a specialist because all my other docs have told me they can't help me anymore and have thrown up their hands. Dr. Cook is doing my surgery on the 21st. I've been really scared about it but the more I talk with his staff and I see that they believe me and what they suggest and do for me really works, the better I feel. I want to share my experiene with Dr. Cook so that anyone out there who's suffereing like I am can know that there are other docs out there who really know how to help and take us seriously.
Anyway, I'm keeping a daily journal on my website along with playing with the graphics etc. I wrote a summary of my story there, which is more like the highlights of what's happened. I'm sure anyone with endo knows that if they were to try and talk about how horrible and dibilating it makes every day, well, it simply would be too long and too hard to do.

I guess that's all for now. My head is spinning and I think I need to go back to sleep again. Man! I am so thankful for these pain killers! I may be completely useless and brain dead, but the pain is virtually gone. What a huge relief! It really helps with the waiting game.

I hope my story will end well and I can tell about what worked for me so other women who are suffering with endo...maybe I can help with info about other options.

Sincerely,
Katya

Just curious - did you go on estrogen therapy after the hysterectomy and oopharectomy? And if so, how long after did you wait before starting it?

Hi Katya,

My dd's name is the same as yours...it's such a pretty name.

I am so sorry to hear of all the troubles you are having and I hope the docs can get it all straightened out for you soon.

I haven't had any further trouble with endo since my surgery but I had an almost-TAH/BSO and no HRT because they unexpectedly found cancer. Doc says my endo was really bad, which explains the amazing pain I had been in for about 7 years (I thought it was just the price of getting older - i was approaching 40) Sometimes I would pass out from it - bad idea when driving, by the way!

Pain went with the rest of the equipment back in June, but now they are telling me that when they go in again in Jan or Feb to take the cervix (which they didn't take earlier because of the endo) they have a tough job ahead of them...Doc says it's going to be like carving something out of cement.

I wish you the very best as you deal with everything. You'll be in my thoughts and prayers.

Thanks for the replies guys! I didn't go on estrogen after they hyster or opperectomy. I tried for one week after the hyster about four months out and pain came back. Then after the oopherectomy I tried again over six months out only to have the endo come roaring back. But I had also started having endo pain again before I started the estrogen the second time. And stopping the estrogen hasn't done anything to help at all. The pain gets worse every day. Now I'm on dilaudid every 4hrs for pain. Just waiting till my next surgery this thurs.

Hi there Shwankey,

I had my hyst/ooph in Sept of this year and this has been my fear. My doc told me that if he left my ovary it would come back. So we took them both. I don't take any estrogen or progesterone, only maca and vitamin e. If the cells that cause endo were there for years, I find it hard to believe that it won't come back. When endo has been there for years it has to be everywhere and there couldn't be no way the docs can get all of it. I have read that it can affect the intestines as well. I really think they have missed some for me. My bowels are horrible now and the hemorrhoid problem has been a nightmare that if things don't change soon, they are planning surgery for that.

I was really hoping that after the hyst/ooph, life would be so much better and I was looking forward to life without pain. Reading your post makes it clear that this stuff is like getting rid of a roach problem, the harder you try to get rid of them the more they appear. (never had them myself but heard stories LOL!)

I pray that mine doesn't come back they can only take out so much. Also, I would think that the more surgery you have the more scar tissue you grow, which is a whole new problem in itself. Could that be part of your situation along with the endo?

Best wishes to you. Keep us informed of your treatment plan so we will know what to do and tell our docs if we find ourselves in this situation.

Praz

Hi,
What surgery are you having on the 21st? A lap to get rid of more endo? I am about 9 wks post-op and my endo pain has returned with a vengence. I, too, am on the same pain meds as you and feel equally brain dead. What is an oophectomy? Maybe I need one too??

Hey,

Oophrectomy is removal of ovaries. Okay, here is the wierd thing. After I read these post, the next day, I started having some really wierd pain around the area that my ovaries used to be. It is sharp and stings, hurts bad when I move certain ways or bend over from a sitting position. Could this be adhesions or more endo? Any ideas anyone and is anyone having this same pain? It is on both sides. It was really bad last night to the point that I was getting a little worried. My surgery was in Sept and I hope I haven't done something to pull something lose.
Also, I am having problems with my bowels and have been straining a lot so I am wondering if I may be getting a hernia?

Praz

Praz