Endo After Hysterectomy And Oopherectomy

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 hard. 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. Here's my web address. I'd love it if people went there and left me messages in my guestbook! http://www.endo.birkana.us. I don't know if it's ok to put links here but if it's not, I supposed someone will tell me. I'm so medicated that it's hard for me to remember and read up on ever rule.

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. His website is http://www.pelvicpain.com.

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.




Dr. Cook...www.pelvicpain.com
shwankey shwankey
31-35, F
10 Responses Dec 15, 2006

There isn't enough space on this page or time in a day to tell you about my struggles with severe endo. I'm 54 yrs old, and have had SEVERE endo since I was 15. I had a total hysterectomy when I was 34, but from 24 to 34 I did IVF twice. I've had over 14 laparoscopic surgeries and thought after the hysterectomy that I would finally be pain free and healthy. That wasn't the case. The endo has traveled through out my body and the scar tissue from all the laparoscopic surgeries is not causing havoc on my stomach, intestines, bowels, esophagus, you name it...I'm miserable! I've been to NUMEROUS doctors in the past 5 yrs and no one can tell me for sure what is causing my stomach issues nor can I find one that will just go and and take a look. I know it's scar tissue and I know it has my digestive tract jacked up bad. If I don't find some sort of relief soon, I'm sick of being sick. I'm tired of hurting every day, not being able to eat, poop, have sex, clean my house, do a situp, walk a dog, nothing, just like when I had active endo....I'm miserable NO PAIN PILLS, nothing and just ready for it all to stop. I can't even lay on my stomach to sleep anymore. I really hoped by giving up my chance at ever having children, would have given me relief, a chance at a better life a more fulfilling one but it didn't and I'm about out for the count. Can drag myself into work in this much pain anymore. I go to the gastro doctor Friday so I can get a new colonoscopy, then if nothing found...they are going to diagnose me with Fibromyalgia. WTF? Why can't someone just tell me why I am living a miserable existence?

how would i know if i have endo? i had ;aproscopic hysterectomy and oofrectomy jan of this year, its now augest. i had no help whatsoever when i got home two days after surgery. but im on medical and they dont go 'above and beyond' for folks, hell they almost let me die because doc was on vacation.but i thought i ot strong pretty quick, but lately im in more pain than before the surgery.all my doc does is send me back for more blood tests, but i never know what for or what he found. how would i know if this is whats kicking my butt too? thanks.

thankyou for sharing your story. I have made contact with Dr. Cook's office. I have endo that never left after my hysterectomy & oopherectomy in 1990. I have had endo pain for 41 of my 53 years of life. I too take dilaudid and Midol for the pain with occ. visits to the ER. I am currently having a flare and everything I do comes with a price. Katya you have given me hope. I now start my homework my insurance company first then the paperwork. I was told that I will get to talk to Dr. Cook. After that I will get to go to CA to see him. I live in WA state so I don't have too far to go. I got emotional but I told that it was okay and to hang in there. Thankyou again.

i had fibroids, my uterus was full of them,one was the size of a graipfruit, there was so many and my pain was so bad, i had a hysterectomy withen 2 weeks of diognisis. while doing the sugury they discoverd endometrisos, i was able to have my uterus removed vagialy, with 3 tiny incisions on my belly.i was able to keep my overries

well i see im not the only one goin thur this I had a hysterectomy in december because of the endo I dont know if I completely healed . , but im in so much pain i must have scar tissue on my organs my back be killing me and i dont want to take any meds for it I have to find other options good luck ladies.

i have the same syptoms and the same surgery. none of them helped. The only thing that helped this pain was prayer and only estrogen birth control pills

stop the surgeries for endo...they creat more scar tissue ans more problems....I had a medtronic pump put in and its better

Where did you have your medtronic surgery done? How did you find your dr?

I to had a hysterectomy and now endo is back having my ovaries out and am very glad for the morphine tablets or I could not handle the pain. Dr.Thiel is amazing and I trust him completely it is so nice to know i am not going thru this alone,that there are other suffers out there.

I'm on medical leave right now due to having a total hysterectomy. Endometriosis ruined any chance of my having my own children but it can't ruin my life. I simply won't let it.

I'm sure if it's endo, but my mother had these fibrosis-growth insider her uterus walls. She had a hysterectomy and oopherectomy to remove them. <br />
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The scar looked pretty bad, but she was ok when she recovered. <br />
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Hope you're feeling ok. :)