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Post by cherry on Nov 17, 2010 14:59:30 GMT -5
I feel like I learned a lot from my second surgery, the recovery was long and difficult. Even months after, if I over-exerted myself I would see my recovery set back. I would say that for me, I can't say when my endo pain returned, I know the sites that were operated on were painful for a long time after, and my first bleed after was painful because these recovering wounds will have been upset by our crazy-ass internal menstruation. I was put on GnRH after each surgery and had a mirena, so I had bleeds rather than true periods, and they were long and unpredictable. I can only say that there were crippling pains and symptoms that were immediately alleviated by my surgeries, that I felt I got my life back in some way, even if I was in agony with recovery or with breakthrough bleeding. This is the first proper contribution I've had to this discussion. In my case certainly, I can't say when it returned after the surgery, I know that certain old patterns are emerging again, even without me having a menstrual cycle, old pains are coming back and things like that. But for a long time after, I had bad pain and different pain and 'same-old' pains during my recovery and it's very hard for me to determine where recovery and healing ended and endo returning begins.
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Post by msheathieliz on Jun 19, 2011 0:45:44 GMT -5
My symptoms returned after 3 1/2 years.
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Post by jessabug on Aug 25, 2011 0:06:25 GMT -5
Okay, so!
I've noticed an interesting trend here and I've gotten really curious about it. There seem to be several girls on here who have had the unfortunate luck of experiencing endo pain either returning or worsening after their laps.
For me, I had a slow increase in endo pain up until my trip to the ER, and then after that I had daily endo pain for about a week until my lap (when my endo was diagnosed). Afterwards, I was pain free for about a week (this was while I was on painkillers, though) and then it came back just as bad as the week before my lap, and has slowly been getting worse.
Of those of you who have had a similar experience, care to share? I'd like for this to be a thread where we can discuss this occurrence and maybe brainstorm about it. It seems to me like this should be a rare thing, but is it really?? Why does it happen? What is it linked to? Bad docs not knowing what they're doing? Aggressive endo?
Share your thoughts and stories!
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Post by 1234 on Aug 25, 2011 6:03:11 GMT -5
I think there are several threads on this. I kept finding and reading them after my lap, because I was frustrated not to feel better. They were really helpful.
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Post by Karen on Aug 25, 2011 6:25:10 GMT -5
For me, the pain-free part of it lasted only as long as the painkillers. Within 2 weeks, I was right back where I started. While I think part of it could clearly be due to surgeons that don't do enough or get it all, or use sub-standard processes, I think there's SO much more going on down there that isn't addressed during surgery. Surgery deals with the physical parts of endo, but endo is much more than that. A lot of the theories surrounding how endo works has to do with hormonal imbalances and auto-immune responses, not to mention all the ways the surrounding tissues and muscles cope with that sort of pain. These are all things that are ignored during surgery. It really infuriates me that doctors are quick to suggest surgery and then don't follow up with the other areas afterward. Most just press a one-size-fits-all and prescribe BC, and they're really doing a disservice to women by not even suggesting other options to use alone or in conjunction with BC. I really think a lot of women push for additional surgeries because they're still in pain, but if they were given direction to deal with their endo in other ways, they'd probably make a lot more progress than another surgery. Don't get me wrong - I realize some women NEED additional surgery without a doubt, but some are just so desperate to do SOMETHING, they think another surgery is their only option. I know for a while when I didn't get relief after my first surgery, it was in the back of my mind that I'd need another surgery within a year or so. It's been almost 3 years now and I wonder if I'll need another lap in the next 5 years. I'm stepping off my soapbox now.
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jtean
Full Member
Posts: 119
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Post by jtean on Nov 9, 2011 15:43:38 GMT -5
So, i'm wondering if any of you had pain that felt like endo pain, that was just surgery pain? I had my surgery 6 days ago, and i've been having a lot of what feels like ovary pain, and also really bad pain in my joints. A lot of the pain is close to the incisions, so it could definitely be stuff that's sore cause it's healing up right??
I got really scared last night, because i was having a lot of pain on my right side, where my endometrioma was, but i'm sure he did a lot of work on that side, so maybe i'm just sore from it healing? I'm going to talk to him about it next week, but i'm super scared of the endometrioma coming right back, because it's basically had me bed ridden for the past few months before the lap.
Just wondering if anyone experienced pain like this
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jtean
Full Member
Posts: 119
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Post by jtean on Nov 14, 2011 18:08:02 GMT -5
Okay, i'm pretty sure the cyst is back. I'm having the exact same horrible pain It hasn't even been two weeks!
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Post by 1234 on Nov 15, 2011 7:04:24 GMT -5
I'm so sorry! I'll hold out hope that it is still pain from teh internal work around that ovary. When is your checkup?
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jtean
Full Member
Posts: 119
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Post by jtean on Nov 15, 2011 14:09:55 GMT -5
Tomorrow. I really doubt it's just pain from recovery, because it feels EXACTLY like the ovary pain, where i have horrible stabbing in my right side, right side lower back pain, and pain all through my right leg joint. Also, I'm pretty sure it's coming on with my period (hard to tell if it's for sure my period yet cause i've been spotting since the surgery, but it seems like it) and i know this stuff grows with your period. One thing i can say is that i have no cramps right now, even though it seems my period is coming on, which is sort of amazing...but, it doesn't matter when i have a horrible stabbing pain in my side
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Post by Karoliina on Feb 28, 2012 14:54:38 GMT -5
Hard to say if i'm still healing or is it just the pain coming back. Surgery was in November and I really haven't felt any better at all, just worse. Before the surgery I hardly had any pain in my left ovary (they found something there and burnt it away), now i have very stabbing and annoying pain there every day. I'm frustrated and sad, angry, disappointed.... at times feel like if this is life then I dont want to live anymore. what kind of life is this, having pain all the time?
This left ovary pain is so terrible that I seriously just want to puke.... maybe I should see a gyno, don't know..
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Post by 1234 on Feb 28, 2012 16:01:34 GMT -5
Karoliina, I'm sorry you are still hurting so much and are so down about it. Pain and ill health are depressing, and have gotten us all down at different points, to different extents. It's part of dealing with this disease, and it sucks, but the disease has its good sides too--you do appreciate the good days so much more! I would certainly go see a gyn, but maybe also try to see if your pain levels can be improved by trying some of the other ideas on this board? Let us know if you have any questions on anything. I hope your day is improving!
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Post by indyfabulous on Jul 28, 2012 10:28:29 GMT -5
Mine returned a little less than three months after surgery. And it's much worse than before. I get the frustration, you get excited thinking the surgery would make things better, and you do feel better for a bit. It's dismaying to have it come back and be even more intense!
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Post by claireboe on Aug 28, 2012 23:19:07 GMT -5
After my daughter's first surgery, she had about two weeks with diminished pain, but she was on pain killers, so it's hard to tell. After that two weeks, the pain came back and kept getting worse and worse.
My research has shown that to have surgery with a general ob/gyn who is not an endo "expert" is a waste of time, and in fact, may contribute to additional pain caused by adhesions from surgery. Please, do whatever it takes to see a practitioner who specializes in endo. The Endometriosis Association has a list of docs, including their credentials and even the percentage of their practice that is devoted to endo treatment.
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