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Post by jessabug on Feb 22, 2012 20:59:12 GMT -5
Hi ladies,
I started this thread because I'm interested in getting feedback specifically from women who have had surgery with a specialist who has EXCISED their endometriosis. My reasoning for this is that I am curious as to what the response rate to this kind of treatment has been.
I recently (this past December) had surgery with Dr. Redwine from Bend, OR -- one of the top endometriosis surgeons in the world -- and feel like I'm going a little bit crazy because my symptoms have changed, and while many have gone away (YAY), others have not, and have intensified. I am very confused by this and am curious how many women have experienced this problem post-op and what they have done about it.
A brief history..
Dec. 2010 - June 2011: pain during BM's, random explosive pain in abdomen, knife-like pains in abdomen, electric pain over left ovary, sometimes radiating down my leg. Excruciating pain during sex, tampon insertion, etc.
June 2011: Had a laparoscopy immediately following my second trip to the ER. The endo that was identified was cauterized.
July 2011 - Dec. 2011: Pain intensified as quickly as two weeks post-op. Experienced all of the above symptoms, in addition to the development of cramping/backache nearly every day and an increase in "explosive" pain episodes in the abdomen. (also, cue grinding fatigue)
Dec. 2011: Surgery with Dr. Redwine. Endometriosis was excised and a presacral neurectomy was also performed.
NOW: Starting Jan. 19th, I began experiencing heavy cramping and backache to the degree that I needed to start taking my percocet again. This continued until Feb. 13th. My period was Feb. 3-10th. I had hoped that perhaps this was just recovery pains, ramping up for one hellacious period. But on Feb. 20th, the cramping started again. I am worrying that this might become a cycle.
I spoke with Alana from Dr. Redwine's office and she says that they suspect that I am suffering from some other uterine pain condition in addition to the endometriosis. She suggested that I track my pain, which I have done, and discovered that it started on almost the exact same day, like clockwork. I really hope this doesn't mean I'm in for another three weeks of misery!
I am really curious as to how many others of you have had similar experiences, in the sense that surgery was not 100% effective. I specifically asked about those of you who have had excision done by specialists because I know how easy it is for endo to come back when your surgery isn't performed by a specialist and excised rather than cauterized, etc. and I would like to weed out those people as I know that it is unfortunately 'typical' for surgery to be only temporarily effective in those cases.
Thanks girls! Hope to hear from some of you!
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Post by semicolon on Feb 23, 2012 7:49:11 GMT -5
Okay, I'll tell my story- sorry if it gets long!
Oct 2010: ER visit with substantial pain, eventually imaging showed colon stricture over next few months Feb 2011: colon resection, removal of left ovary and diagnosis of endo as the cause (no specialist, no excision) July: hospitalization worth small bowel obstuction Aug: excision with endo specialist, mostly bowel and pelvic work, positive visual of endo on diaphragm Sept: excision of endo off diaphragm, small bowel (specialist and general surgeon)
I sought out a specialist when I noticed symptoms of diaphramatic endo in my cycles after my 1st surgery. I Think this was the best decision I could have made. My periods have changed, heavy and i have a day or two of pain, but I have not had the excruciating bowel pain. I am certain I would have had another obstuction by now. My diaphragm symptoms have almost entirely resolved, which is a huge relief.
So I don't think I am 100% but I didn't really expect to be, and I am definitely more functional. I am wondering about adhesions and if I have adeno, and I am not sure if my symptoms will return since it hasn't been that long since my surgeries. But I consider myself an excision success story so far and would see my specialist again in a heartbeat. The first cycle or two were bad but got better, but I know that hasn't necessarily been the case for you, Jess.
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Post by jessabug on Feb 23, 2012 13:52:44 GMT -5
Hi Semi, Thanks for sharing! That's so intense. I'm so sorry for everything you've gone through! Makes my situation seem a little more bearable. What are symptoms of diaphragmatic endo like? I haven't really heard much about it. I've sometimes wondered too about having adeno, just because it seems at this point like the heavy cramping is never really going to be resolved. Like you, the majority of my syptoms have disappeared, which is great, but it's this terrible heavy cramping that doesn't seem to dissipate. But adeno doesn't cross my mind often, because I'm aware of how incredibly rare it is. I think it's more likely that Alana is right and I just have a raging furious uterus
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Post by semicolon on Feb 24, 2012 14:43:51 GMT -5
Nah, my stuff's not too bad. I have never had that much pain, or what I think now is that I have a very high pain tolerance so that helps. The diaphragm pain is sort if like that trapped gas pain after surgery if you've ever had that, you feel it all the way up to the shoulder, very annoying and weird. I wonder how rare adeno really is, I haven't looked In to it much. But they up used to think endo was rare but it's really just under diagnosed or mis diagnosed. I wonder if we have an adeno thread kickin around here, I'll look around. I was going to ask both my obgyn next week and my specialist when I see him for a 6 month follow up. I like to think my uterus is just trying to get my attention, but is hard of hearing each month.
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Post by Luminosity on Feb 28, 2012 2:27:37 GMT -5
Nah, my stuff's not too bad. I have never had that much pain, or what I think now is that I have a very high pain tolerance so that helps. The diaphragm pain is sort if like that trapped gas pain after surgery if you've ever had that, you feel it all the way up to the shoulder, very annoying and weird. I wonder how rare adeno really is, I haven't looked In to it much. But they up used to think endo was rare but it's really just under diagnosed or mis diagnosed. I wonder if we have an adeno thread kickin around here, I'll look around. I was going to ask both my obgyn next week and my specialist when I see him for a 6 month follow up. I like to think my uterus is just trying to get my attention, but is hard of hearing each month. My uterus is always catching my attention, just not in a good way
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Post by Luminosity on Feb 28, 2012 6:04:54 GMT -5
Feel better Jessabug . I've had that same electric feeling pain in my right ovary before . Its not fun that's for sure!
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Post by crazyladi99 on Mar 2, 2012 10:12:19 GMT -5
I had my surgery done by Dr Leyland in Canada. He is one of the top Specialist there. He did excision as we as a Presacral neurectomy and removal of rectovaginal cyst. I have been on the pill ever since and feel no pain when it comes to cramping because I dont get a period, but I have pain with sex, bowel movements and Bladder pain. Dr Leyland says its not Endo because he put me on Lupron for another 3 months and he said if the pain doesnt go away its not endo?? I also had High Grade lesions on my uterus and maybe that was what was causing the pain? Anyhow I am not sure how I would feel if I came off the pill. I feel the surgery was a success but now I am more confused than ever and I got told by Dr Leyland that I had Neuropathic Pain Syndrome. This just makes me more angry.
Are any of you on the pill since your excision surgeries with these specialists? I wonder if that makes the difference?
I would love to have a surgery with Dr Redwine but I am sure I couldnt get coverage in Canada to go.
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Post by Karen on Mar 2, 2012 16:48:34 GMT -5
Dr Leyland says its not Endo because he put me on Lupron for another 3 months and he said if the pain doesnt go away its not endo?? FYI - this is false. Some women have little pain while on Lupron, but for some, they still have symptoms. I'm sorry he told you that.
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Post by omaklackey on Mar 4, 2012 21:56:08 GMT -5
I had my surgery with a specialist in sept. and at first I felt like it was helping. No more IBS like symptoms and less overall pain since she also found my IC, which was caused by endometriosis in the bladder wall, as well as detaching my colon from the side wall of my pelvis (both sides) and getting that treated was huge, but flash forward to four months later and I'm in the hospital with an Ischemic small bowel obstruction caused by an endometrial adhesion. The thing is though, my surgeon was at least very up to date and said that she removed what she could see and she knew and said "Its not gone, any that I didn't see will and can grow back". So I would still recommend her. Dr. Mosbrucker said we will hold off on a second surgery as long as we can but she recognizes that its more then likely grown back. So frustrating. It took two years to talk myself into the expense of going to her and the bills for that surgery haven't even come in yet and I'm planning another one. Pretty (former member) also had to go back to Dr. Mosbrucker not very many months after her very expensive surgery (airplane rides etc) to get an ovary that was causing trouble removed and ended up with another four hour surgery. We all want to think that someone somewhere can fix us BUT there are times when surgery is no longer something we can ignore, like a life saving surgery due to a blockage, or the diaphragmatic endo that caused a collapsed lung. So when that happens its nice to know the really good ones are out there and they will help you. Dr. Mosbrucker is still pretty darn awesome, even if it grew back, I at least know I have someone on my side. That was worth a lot of money! I cried after my appointment with her in sheer relief that someone believed me and wanted to help. I just wish some of these other specialists wouldn't be quite so convinced that they can make it all go away, when we ladies know the severe cases have a bad habit of coming back. I have a hard time with that. I do sometimes read through the back threads on the surgery thread and see how many other people have fought to get to a specialist just to see if they had good luck. It makes me feel better to know that sometimes it really works, that someone else got a happy ending.
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Post by alivenkicking on May 7, 2012 23:29:44 GMT -5
i'm so glad you started this, jess. first because i haven't been active on here since the time of your surgery, and i've wondered how you fared. i'm sorry to hear you're still having the severe cramping, ugh. i had excision with a specialist (dr. robert furr in chattanooga, tn) in jan 2011- lots of implants and schtuff, bowel fused to recto-vaginal wall, etc. recovery was okay, but i was an anomaly as a patient for him; while he supported my decision to use bio-identical progesterone instead of what most of his post-op patients use (librel, i think), he admitted he didn't know enough about it to help me with dosage, etc. to stop my periods. --i recently read redwine's book - he doesn't believe it's necessary to stop bleeding, does he? or even discourages it? so i worked that out on my own, but as the weeks went by, i suddenly began having overexertion pain, as they called it, with very little activity. and i was still cycling just without the bleeding, with symptoms almost as bad as pre-op, minus a few GI symptoms. their response was if i didn't want to do the librel, they couldn't help. months later, i was still having deep pain and nausea with limited activity (walking a mile at a barely-brisk pace) and he suggested it was caused by a pain syndrome (the body/brain gets in the habit of sending pain messages with chronic illness, that it sometimes continues even when the original stimuli is gone.) he suggested a pelvic floor physical therapist. so off i go for my allotted 12 visits - she was indeed awesome, used energy medicine as well as gentle manipulation to "unstuck" my insides. she said everything felt like it was in a big glob and nothing was floating around as it should. i got significant, albeit short-lived, relief. that was Jan- Aug 2011. now i'm in a new town, with the same debilitating symptoms. i finally went to a gastroenterologist today and am scheduled for a CT scan in the morning. i hate the thought of so much radiation, but i have tried so many natural approaches, weaned off psychotropic meds, cut out the bio-identicals which hadn't helped in two years of use, gained alot of insight and psychological healing through energy medicine, but my body is still making it impossible for me to function normally. i haven't worked in over a year!! i would LOVE to WORK for a living, and feel productive and like i'm making a contribution in the world! so yeah, specialists. i suppose not even they have the secret key for endo. but i do highly recommend pelvic floor physical therapy, or any kind of energy healing modality! of course, do your research, but that goes without saying...
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