Emily
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Posts: 148
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Post by Emily on Dec 23, 2012 16:49:47 GMT -5
I am scheduled for my first lap on January 30th. I asked my brother in law (who is in his final year of medical school and has assisted on dozens of laps that involve endo) what he thought of the surgical procedure and he seems to be somewhat doubtful about the kind of results I can expect if they do indeed find endo and excise it (my surgeon uses a non-contact CO2 laser). He has done some research for me, and I have to say I am really on the fence about it after being pro-surgery. He has found some pretty high numbers as to recurrence of endo in different locations of the pelvic cavity and therefore requiring additional surgeries. A study that he located also reported only 7% improvement in pain. He has suggested that I look into more natural remedies before having the surgery. He is just looking out for me because he knows the procedure and the recovery time are painful and expensive, so he wants to be sure that I make an informed decision, and I really respect him for that. I would really appreciate any replies from those of you who have had a lap (or multiple laps) and tell me if you thought that the lap was worth it and if additional laps were needed for recurrence of endo. Thanks ladies!
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Post by semicolon on Dec 24, 2012 9:16:52 GMT -5
I think the research is very hard to interpret. If you are looking at every surgeon, then repeat surgeries are going to be high because obgyns that burn legions and leaving disease behind. Also, many obgyns are not comfortable dealing with disease on structure like bowels, bladder, and even ovaries (some feel that fertility will be affected if part of the ovary is removed, but leaving disease behind itself affects fertility) so that is a source of continued pain. The more aggressive excisons pecialists who keep thier own records have much lower rates for repeat surgeries and much higher rates for pain relief. I would ask your surgeon for his rate of success and repeat surgeries.
I have had three laps with a specialist, which sounds like a lot. But the first two were back-to-back since I needed a thoracic surgeon in for the diaphragm excision, and my last lap was my choice to do partly for fertility reasons. I have very invasive disease that a regular obgyn would never have been able to address (one really didn't believe I could have had endo on the diaphram). My personal view is that having surgery with a specialist can clean things up, and then natural methods can really help for some people. It really depends, I am someone that does not have daily pain but endo has really damaged my organs, and surgery has been the most effective when diet changes have not helped me much (have been a regular exerciser for up years, which does help).
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Post by willow82 on Dec 24, 2012 10:17:54 GMT -5
I had my lap almost 3 months ago with a specialist, and began having endo symptoms again a month ago. HOWEVER, my endo is stage 3 and I was pretty much told it was going to be extremely likely I would continue to have symptoms without aggressive follow-up (which I'm doing). Stage of disease for some is predictor for ongoing symptoms especially for stages 3 and above, since it is likely we have more microscopic disease, buried lesions, and potentially more aggressive forms endo.
In my case I had full excision of all visible endo, and all adhesions were also cut out. My surgery was successful for what was seen and removed, though I can already tell in my right groin it is slowly creeping back, however there I had deep endo leisons which often have a high rate of recurrence.
My primary problem at this point is with suspected endometriosis in my bowel, where I either have visible leisons deep in the bowel which were not found in surgery, or that is a newer area of endo (which would make sense it is my newest of my endo issues, way worse for the past 5 months) and it is still microscopic and lesions are still forming.
What I discovered is that the bowel is long, and often requires a bowel surgeon to operate on the endo. So often unless endo is visible from what is seen during laproscopy, they don't dig around. Chances are when I have a second surgery I will have a bowel surgeon on site.
I think it's important to remember that not all of us are the same in disease course, severity of endo growth, and severity of endometriosis pain. Some of us based on how aggressive our endo is, and where our endo is, are almost guaranteed to need multiple surgeries.
Even with my ongoing issues, my pain is still over 50% better than before surgery. I'm in pain all the time but not so bad that I can't function, which is how it was for me before. Also overall my bowel is still running better thanks to having adhesions removed from my intestinal tract, and my inflammation is quite a bit less.
My surgery was necessary and a huge success and reduced my pain and is allowing my digestion to be a bit more normal, unfortunately like semicolon I have very invasive disease. Also some of my current symptoms severity is due to my endo loving to feed on estrogen in BCP, and breakthrough bleed. I've had two massive failures (each unique!) with BCP the past two months which made things worse, and my body is still recovering from surgery.
AKA my story is not typical, though I hope will shed some light on some of those numbers.
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Post by Karen on Dec 24, 2012 12:14:27 GMT -5
I'm all about natural treatments, but I'm also all about learning what you're up against first. For me, my pain came back with a vengeance less than 2 weeks after my lap. Although my lap didn't help with pain, it let me know what I was dealing with. I briefly tried the hormonal and pain treatments my awesome surgeon recommended to no avail and with severe side effects, and had I not discovered natural treatments, I can guarantee I'd have had another lap by now. Instead, I've done all I can to treat my symptoms in many natural ways, and I have my endo symptoms controlled at least 90 percent more than surgery ever did for me. There are a lot of factors involved in reoccurring laps, including the skill of the surgeon, but also in correcting any correctable lifestyle factors that can contribute to the proliferation of endo. Those are all things that aren't factored in to repeat lap rates.
My suggestion would be to have the lap, see what you're up against, and get cleaned out by a skilled surgeon, then see what natural treatments work best for you to keep you at your best. At the end of the day, that's entirely your decision to make. I don't believe endo exists due to a lack of surgery or drugs, but I do believe surgery is the first step in knowing what you're up against so you can in turn figure out what it really needs. I'm glad you have someone in the medical field in your corner that sounds pretty willing to help you find your way.
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Emily
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Posts: 148
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Post by Emily on Dec 24, 2012 13:11:19 GMT -5
Thanks for all of the input! I work at a medical library for a med school that is in the top 5 in the country, so I'm lucky to have some incredible resources at my fingertips. I poured over journals for about 5 hours last night and I have to say I am leaning towards the lap. As you have all said, it is better to know what you are up against before starting a treatment plan. It may not even be endo, so it's in my best interest to "get the hood open" and see what's going on.
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Post by willow82 on Dec 24, 2012 14:33:25 GMT -5
A caution with any form of treatment. Everyone's body is different, and everyone's endometriosis is different. Often what will work for one person may not work for the other. That's why many of u will stress the importance of having a good doctor. It is so important to have a medical team you can partner with when exploring treatment options.
The location of endometriosis, the amount (stage) of endometriosis, the depth of endo lesions, how your body and the endometriosis respond to hormones all affect what you will need, best treatment options, etc.
Also the hope of laproscopy is to be beyond diagnostic, and if you have deep lesions or adhesions hopefully restore organ function.
Without my surgery at this point I'd be within a month or two of emergency surgery for strangulated bowel.
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Post by loveshoes on Dec 24, 2012 15:30:49 GMT -5
Hi Emily! Please be aware that we all have our own opinions on treatment for endo. Some of us here are pro natural treatment and some us like myself are pro using hormones. Everyone is different and that is ok. YOu need to gather information and make a decision that YOU feel comfortable with. Don't worry what we all say, this is just input and part of your information gathering process. My opinion on treatment of endo is sure, you can change your diet to help with inflammation which I did to, and also things like working out and living a healthy lifestyle help but without using the birth control pill continually to not have a "period" ever, my life wouldn't be like it is now. I was diagnosed in 2002 via an exploratory lap. This was done in canada but I was also hemmoraging and they didn't know why so the lap was mostly for that. I did have a history of very painful periods as well prior to that. During my lap they didn't remove any and I was never given a stage but I would guess that mine would be a 4 since they requested to film the surgery to use for teaching purposes because mine was so bad. I was also getting married 2 months later so I think they didn't want to remove any of it so I'd recover quicker. Not really sure. I also had a D&C to stop the hemmoraging ( which my current doctor believes happened b/c the endo ate thru my vaginal wall ). Anyways, my treatment plan has been continual birth control pills. I did that from 2002 - 2009 and then we wanted to try for a baby so I went off hormonal treatment. For all of those years, I had zero pain. I felt totally "normal" if that helps at all. When I was off the pill I had severe pain during periods, it was just hell on earth to be honest. I stopped after just over a year of trying because it was literally destroying my body. I went back on the pill and I'm back to feeling normal again. sure, there are risks with any form of treatment but to have a pain free life, I'm willing to accept those risks. There are also alot of good benefits to using the pill which prevents certain cancers. Understand that there are pros and cons to everything but make sure that whatever you decide is what YOU are comfortable with. This is a resource for you to gather, fact find, take notes and make a decision that's right for you. We have afew members here who have been brave enough to try lupon and despite many of us being very afraid of it, those members using it have had very good results to date. Again, we're all different. Best of luck to you! I'm glad you found us!
Sorry, coming back to edit - I didn't really respond about the reoccurance concern. I'd say, in my opinion, if it's not treated somehow, it will come back or spread again. I can't say 100% on that tough. I do know that in some cases, endo grows fast and furious and then just stops like you max out almost. That seems to be what happened to me, mine isn't growing or spreading anymore ( my largest mass is visible via MRI though most endo is not seen thru this method, I just happen to have a huge ball of it between my rectum and vagina ). Anyways, based on measurements from a 2002 MRI and one I just had 2 years ago, my large mass didn't grow but i also credit that to being on the pill, that keeps my endo totally quiet and "off" per sey. I would say that overall, if you don't treat it somehow that yes, it's going to come back, just depends how much is the million dollar question and I don't think anyone knows that answer. It's possible you can have surgery and you'd do very well, it's just so hard to say. We are all so different with our endo, I don't think anyone here can give you a firm answer. Seems that there are some that have very little endo but mass amounts of pain and people like me filled with it, and no pain as long as I'm on the pill.
Hope this helps!
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Emily
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Posts: 148
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Post by Emily on Dec 24, 2012 16:42:05 GMT -5
That did help, thanks! I was on the pill from age 16-23 for really painful periods (24 now). The pill helped some, I would say, but I was still in a lot of pain. My sister had DVT and a pulmonary embolism and I was tested to clotting factors. What the doctors found lead them to advise me to stay away from hormones, so that would only be a last resort option for me.
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Post by chibineko717 on Dec 24, 2012 21:09:09 GMT -5
I have had 4 laps. One every year since I was diagnosed at age 20. I think the main issue with recurrence is that it depends on the doctor and the stage of endo. My first 2 laps were just regular laps where they burned and drained the endo from the cysts. My endo came back within a few months from both of those surgeries even though I was put on Lupron.
My 3rd surgeon did a daVinci lap where he said that he excised the endo and that it would not come back before 5 years. Although he considered himself an expert, he was not since he did not look in other areas outside the pelvic region.
I went to a true specialist about a year after that since the pain came back. She is a true endo specialist and diagnosed me at stage 4 and said that it can come back even though she excised a lot (it had spread to my bowel, diaphragm, appendix, and gallbladder). Because I am young (24), she said that it has a higher chance of coming back since your hormones are more active around this age. Although I still have some pain, it is not as bad as before. I have also been on continuous birth control for a few years, which has helped with the period pain. If I had not had another surgery, my appendix would most likely have burst and my diaphragm would be in really bad shape.
After surgery you can try different natural treatments. Not everything works for everyone (the endo diet made things worse for me), but if you keep trying to find what is best for you along with having any endo cleaned out, you can get some relief.
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