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Avatar universal

still endo

had my 6 week post op yesterday and found out that the doc couldnt get all the endometriosis out, then while doc was doing her exam she noticed i was a little bit tender then she would like me to be and said that If i end up being in more pain either this week or next week i need to come in for an ultrasound to see if theres not a cyst thats going on, I feel i can never get away from the pain and i'm sick and tired of it , was told that i had a lot of endometriosis but they couldnt remove it all, umm hello thats what the surgery was for i thought
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1214188 tn?1272324207
it has been so long I visited this site. WOW. Hope everyone is well.
Helpful - 0
Avatar universal
I have had my surgery in January - but end June I have a very much swolen stumack - I believe that my endo is back as well. The pain si more controlable but I hate the fact that I even struggle to tie my shoe laces!!!

Endo will most probibly be part of my life forever and just the idea of having to go for another sergery is hirrific. Seems like no matter how many one goes for - the problem will never be disved. I feel disconnected to my partner seeing that sexual intercaurse bring more pain and uncomfort!!! And it feels like they just don't understand. My period also comes for more than weeks at a time - which also bring discomfort!!!!

Maybe one day there will be a cure! Or now, praying seems to be the only medicine!!

Good luck to all!!!!!
Helpful - 0
999780 tn?1263671971
I wish you all the best for your surgery.Some people it works for and then others it doesn't.It also depends on if you have a full or partial hyst. For support and comfort there is a great website that you can join to help you through this.I did and it was wonderful support for me and my family.I will send you the link.Thinking of you.
Helpful - 0
1222892 tn?1312148824
OMG I have made the decision to have a hysterectomy"May 12" due to stage 4 endo and daily pain cramps etc. You mean I will still suffer with this God awful disease? That seriously freaks me out because I was under the impression that after hyst. it would be gone and I could have my life back...
Helpful - 0
1296429 tn?1272919680
It's almost if not impossible to get ALL your endo. My professor is a very lovely and honest man (and hugely knowledgable man!) who told me this is a disease that has no cure, and therefore any treatment given is most likely something that keeps endo in bay, or relieves it getting worse, its pain etc. Some women CAN have permenate results but alot of the time with time it comes back.

Even a Hysterectmy will not rid you of endo always, it can STILL return, and I have friends (from another site) who have experienced this.
Some women even after exicsion surgery have endo return and I have these friends also.

It's really I feel (and feel free of course to dissagree) about management for YOU so you can live a close to normal life.

Since my lasering surgery I've been in constant daily pain.. Im dependant on painkillers now and even they dont most of the time :(

All I can say is attempt to tackle it head on as much as you can, then manage it as best as you can! :)

I hope everyone gets something that works for them, Thinking of you all :)
*big hugs*
Helpful - 0
1214188 tn?1272324207
I sooooo agree with you about an endo specialists........ obgynecologist will tell you they can do it, and in reality will leave you with pain............if I knew that earlier I would have had only one surgery, the first look for the best endo specialist.......Endo can grow anywhere.....and it did, I don't want to go to details, but I am lucky to be alive......I was left with excrutiating pain........which endo covered my organ and waited to burst anytime.....somehow second surgeon caught that...............so please read this.....and don't choose gyno because she or he was nice............ask for the top one in your area........
Helpful - 0
999780 tn?1263671971
I have had a similar story to you.was diagnosed in 2003.had 2 laps in 2004 and one in 2005 had a baby in 2006 and 2007.still no relief.had a hysterectomy in 2008 still NO relief.I have been on hormones to shrink the endo and still no relief.I have now found an endo specialist to help me.I gave had upper GI symptoms.IBS and gall bladder symptoms.I have had all the GI work-ups there are and it all came back negative.My GI had concluded that the endo has so severely entangled itself in my bowel,gall bladder and diaphram,colon etc.This dr in WI is willing to help me and I am having surgery to excise the endo in June.There is no place that he cannot remove the endo from he said.It can be done.It will all be done with a lap.I have been in pain for too long now and finally looking forward to some relief.My husband and I cannot be intimate anymore as I am almost bed ridden the next couple of days with pain and incontinance. Ladies you need to find an endo specialist to help you.The obgyn;s tell you that they are all specialists in endo but I have learned that they are not.I have been through 3 obgyns to find someone to help me all they have is band aids and no solutions.Endo specialists are able to excise it from anywhere.My specialist is having me do a bowel prep incase he needs to do a bowel resection on me.
I have also learned that not all endo is hormone related but that some are born with endo cells.and even men can get endo. I am willing to tell all my story as I feel that non of us should have to suffer from this disease especially if we have a family that counts on us to take care of them.I am looking for a better quality of life for myself so that I can be a better mom and wife.I hope this helps some of you ladies.
Helpful - 0
Avatar universal
My Dr. couldn't get all of my endo out with my first surgery, she said she could've damaged something as everything was stuck together, so she put me on Lupron for 3 months to losen it up, then when she did the 2nd surgery she got it all out..........now a year later I found out it's ALL back and just started Lupron yesterday to help losen it up again. I will have another surgery in June to remove it.


Your Dr. should put you on Lupron (or similar drug) to help losen it before you do another surgery. Unfortunately it never goes away :(

Good luck with everything!
Helpful - 0
Avatar universal
If they removed every bit they found you would never recover.  If you want it all gone you can try getting a hyst.
Helpful - 0
Avatar universal
My Ob/Gyn has recommended surgery for my endometriosis which was only diagnosed this year. I am afraid of this surgery not working. I am now taking Tramadol for the endo and it seems to be working. I don't want surgery if I can get away with it because of this very reason.
Helpful - 0
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