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Post by solost on Feb 10, 2010 2:29:38 GMT -5
Hi everyone,
My doctor believes I have an endometrioma and recommends surgery, but I would rather not have to go through with that.
I am curious whether having an endometrioma automatically means that you have endometriosis present elsewhere in you.
I am worried that endometriomas can burst and "spread" endometriosis throughout your abdominal cavity. I read about this happening online, but I don't know how reliable that is. Is it a myth?
I'm essentially worrying that by putting off surgery, I am increasing my chances of spreading endo or increasing my chances of contracting it in places other than just the cyst.
I know with both endometriomas and endometriosis, you need surgery for an official diagnosis, I am just trying to weigh my options to make a decision about getting surgery. I am *extremely* reluctant to get surgery.
Any help is appreciated, I am really out of my element here.
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Post by Karen on Feb 10, 2010 7:19:44 GMT -5
Endo is a weird disease - some women have it in one or two areas, and some women have it all over the place. Yes, endo can spread, sometimes very quickly sometimes very slowly. The only way to know is via laparoscopy. Was this endometrioma found via ultrasound? How does your doctor know it's an endometrioma and not something else?
You have a right to know what's going on inside of your body so you can get a proper diagnosis and understand your treatment options. What if it's not endo? Don't you want to know what it is? May I ask - why are you against surgery? It's certainly not something fun to just subject yourself to just for the hell of it, but if it's your doctor's valid recommendation, it's something to consider. Have you thought about getting a second opinion just to be sure it's the best route to take?
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Post by solost on Feb 10, 2010 14:33:11 GMT -5
Hi Karen, thanks for your reply and for your nice welcome on the other thread.
Diagnosis was done through ultrasound, the gyn's best guess is that it looks (and behaves) like an endometrioma.
I do not want surgery for many reasons. First off, I am concerned about surgical adhesions forming after surgery. I am worried that the adhesions could really mess up my insides and stick them together, which may be worse than endo? I read that there is something that can be put inside your abdomen to prevent scar tissue, but I don't know much about it.
Second, I am worried that they won't be able to get it all at once. I am not looking forward to a laparoscopy every other year. I need to somehow know that I am working with the best possible surgeon on this, but I don't know where to start. I am really uncomfortable around gyns.
Third, I am worried that the laparoscopy will suddenly need to be a laparotomy (isn't everyone? lol.) Or worse, that there will be bowel involvement, and that I will need later, more invasive surgery because the doctors can't deal with it during this surgery.
Fourth, I have multiple medical issues that I am worried will clash with the surgery.
Fifth, I am worried when I read stories about others' incisions being itchy a year after surgery, and long-term things arising from this surgery. I don't want to still be regretting this decision 10 or 15 years from now. (Is it true you're supposed to request non-PVC tools during your surgery because PVC that is commonly used can cause problems?)
Sixth, and perhaps the most childish, I am freaked out about pelvic exams, catheters, and anything to do with being touched. I still have never had a pelvic, and all ultrasounds were done abdominally not transvaginally because I can't handle that sort of thing. Is it true that they use a uterine manipulator during the surgery? I am really freaked out about it. I am picturing what kind of weird position they'll have to put me in to do all that stuff during surgery.
Any advice? I don't know if it is worth it, and I am really scared. I've searched the internet, but I just find more things to be scared about.
Thanks.
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Post by jjuls22 on Feb 10, 2010 16:11:41 GMT -5
wow thats a lot to be worried about. but i'm slightly confused. You're worried about A LOT of things, that can only be diagnosed with surgery, so i'm thinking you're more scared about being diagnosed. I've had three laps and i don't regret any of them. If you're bowels were involved, trust me you'd know. As for scare tissue, that neat little endometrioma growing inside you, won't dissolve, it will burst which is insanely painful and will most likely cause adhesion's and scar tissue from all of the tissue and blood bursting inside you. Doctors are trained to deal with multiple issues at once when doing a surgery and they will tell you if they foresee complications. What if they go in and see endo all over the place and remove the majority of it? wouldn't that be better than not knowing and it potentially getting worse? Another option to surgery, is they could possibly drain the cyst as an inpatient procedure, no cutting involved, but it won't make the cyst go away b/c the wall of the cyst will no be removed.
Sounds like you've done some homework, but only come up with all the negatives on surgery. Depending on the amount of pain you're in... most of us look forward to surgery.
If you've had no prior issues with endo, or endometriomas, ask to be put on birth control to see if you could shrink the size of it. See if they will drain it. Or, just wait and see.
If you've had past experiences with endometriomas and know the pain they can cause when they burst, i suggest surgery to remove it.
Good luck with you're decision!
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Post by Karen on Feb 10, 2010 18:03:30 GMT -5
I think a lot of your concerns are something we have all thought about, but in the end, you have to weight what is best for you *medically* in the long run. Although there are several alternative things you can try to help with pain/symptoms, you won't quite know what you're up against until you get a firm diagnosis. I completely agree with jjuls - she had some very valid points.
Have you considered getting a second opinion, or discussing these things with your current doc? Any good doc will listen to your concerns and offer you assurance in their skills. If you don't feel that with your current doc, find another. Yes, adhesions can form, yes, they may not be able to get it all, yes, there may be bowel involvement, etc., but a good doc will do the very best job possible to minimize these things! You're thinking *worst* possible scenarios, which is good to do to at least be informed, but you can't let fear get in the way with your health!
Have you asked your doc how long he thinks you could postpone a lap? Perhaps you can make a deal with yourself to try some less invasive approaches between now and then, and if you're still having the same issues at the end of that time, then you'd schedule the lap. Sometimes stuff like this can seem completely out of our control, but if we can find some ways to make improvements on our own, it takes some of that helplessness away. And if the anxiety about it is too great, consider talking to someone about it!
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Post by KSA on Feb 10, 2010 21:01:55 GMT -5
You are worrying about alot that could be answered with a lap. It is very scary to think of all the worse cases and many women jump to the WORST to then find out things are not that bad. I would speak with your doctor about all of your concerns. You will never know for sure until you have a lap. As for the anxiety of the pelvic exams and what position you will be in at surgery. The doctors and staff are all very professional and know that this kind of procedure is uncomfortable they try to make things very relaxing for patients and friends and family are allowed in the waiting area for support usually. I have formed wonderful friendships with the staff at my doctors office and the hospital I go to look at it like that. Try not to think about all that right now they see all kinds of stuff in the OR trust me I know. I am one of those patients that when I leave they all go to the bar after to celebrate that I am out of their care. LOL! Look at the positives of a lap after it you will know what the next step in your health is....Keep us posted on what you decide and good luck!
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Post by hellsbells on Feb 11, 2010 13:34:39 GMT -5
Hi, I had a year of pain, and years of other symptoms, and by last summer I was desperate for a lap because I HAD to know what was going on. I went through a lotof trouble and expense to get it, had it in November. I naturally had some of the same concerns you do, but I swear it's the best feeling to finally be given the answers. It's not a nice disease to have, but I'd far rather know I have it and attempt to treat it, than have years of symptoms and not know why. I used to get squirmy over pelvic exams etc, but the people who do these have seen it all before, that's what their job is and they understand the sensitive nature of the exams, so it stopped bothering me so much. I personally would want/did want definitive answers. You really need to know what 'it' is before attempting to treat 'it'. Good luck, and keep us posted!
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Post by solost on Feb 11, 2010 14:34:46 GMT -5
Hi everyone,
jjuls22, how long did you wait between all 3 laps? Were they close together, or did it take a few years in between?
I would be OK with surgery if it was a guarantee that the pain would stop. But I am most scared that I'll go through everything, and the pain will not stop.
I'm on my 4th month of birth control pills, but nothing has helped yet. In fact, these last two weeks, the pain has gotten really bad, and I've spotted twice which I never have before. It's continuous suppression so I'm not supposed to bleed at all.
I've never dealt with endometriomas before. Do they fill back up with blood again once they burst? I figure the little pocket just constantly fills up again until I have it surgically removed?
Karen, what would you suggest I do to help fix it? I'd really love to be able to stay out of surgery. If you know how I can help this, I'd be really appreciative. I'll go in again to talk to the gyn. She isn't all that personable, unfortunately. I'll look into a second opinion too.
I just feel like once I go to surgery, I'm basically destined to go back in over and over, every other year or so. I think WebMD says 45% of patients experience symptoms again within a year of surgery? Is that true for you ladies?
KSA and atherhel, thanks for the encouragement, I appreciate it from someone who's been there. I am just not sure that after I get diagnosed (if I get diagnosed) that there are really any next steps to take. I mean, isn't it just to deal with the pain and keep getting lap after lap?
Thanks everyone for your input on this. I obviously need to talk more with my gyn, because she didn't provide me with any answers. She just said: "your endometrioma is getting bigger, I recommend surgery" and threw a pamphlet at me. I just looked at her and said "what's an endometrioma?" lol.
I really appreciate you ladies being here. Thanks again.
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Post by hellsbells on Feb 11, 2010 15:44:08 GMT -5
Hi again! Surgery or not, there's no guarantee that you'll be 'fixed', but as I said, it's not the best idea to go for hormonal treatment until you know for certain what you're dealing with. If it is endo, and you have a good surgeon, they could treat some there and then, and then see what the backup plan is. I had some removed during surgery, also had Mirena coil put in and am on Provera tablets for 6 months to stop my cycle, and my gynae reckons that should kill it off. Only time will tell. The founder of this website and forum got rid of hers through hard work, exercise and good diet. The body is amazingly complex and sensitive, you'd be amazed by how changes in diet could also help your symptoms. There's no guarantee you won't need future laps, but there's no certainty that you will. Please read around the forum, you'll get so much more info on which to base your decision. Nobody wants to force you, but most of us would advocate finding out for certain what's going on in there. I know it's a bit scary :-)
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Post by Karen on Feb 11, 2010 19:28:55 GMT -5
I realize having surgery can be a big deal for a lot of people. I was quite excited for mine, but I still had anxiety about it. There is absolutely NO cure for endo, so surgery is a gamble, BUT, it's extremely important to note that without a lap, you have no guarantee what you're even up against. There are a gazillion causes of pelvic pain, and you owe it to yourself to figure out which one is causing you problems!
Although there are several alternatives that you can try to help with the pain and symptoms (diet, supplements, acupuncture, pelvic physical therapy), I would NEVER, EVER discourage anyone from going against a doctor's advice to have a lap. If he/she suggests you postpone it a bit, that you have some time, then yeah, you have some time to play around with things a bit, try different things out. But if a doctor (or second opinion) says yes, you need surgery, he or she is telling you that based on professional opinion. There can be SEVERE consequences to postponing a lap, and greater long term damage can result. I've had a few docs with questionable bedside manner, too, and it's best that you're comfortable with whomever you are working with. A second opinion, if possible, may at least help you put your mind at ease, but just remember that he/she may still not tell you what you want to hear - they'll give you their professional opinion! Whether you decide to have a lap or not, there's still something going on inside of your body, and trying to postpone it won't give you any more control over what's happening to your body.
I realize there's a lot of info out there that can be scary, and yes, some women need several laps, but once you have a diagnosis of whatever it is that's going on, there ARE less invasive options out there that a lot of women respond to. It may not be a cure, and they may not help everyone, but there are many, many options. I found that the best, well rounded, thorough book out there is "Endometriosis: The Complete Reference for Taking Charge of Your Health" by Mary Lou Ballweg. It really covers a lot of the extremes and everything in between. It certainly may not give you peace of mind, and perhaps it may be wise to postpone reading it for a bit, but honestly, for me, it's what gave me hope that I wouldn't be a shell of my former self for the rest of my life from the physical pain I was in every single day. There's a lot more to endo than just surgery and birth control!
And there's a lot more to endo than a whole lot of statistics! We are a group of supportive, informative women that are all dealing with the same crappy disease. Some do better than others with it, but in the end, we're all here for each other, no matter what the outcome. So, scared or not, we'll do what we can to support you, k? But, remember, we're not medical professionals, so part of that you have to leave up to your doctor's opinion.
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Post by solost on Feb 12, 2010 5:35:40 GMT -5
Hi everyone,
I really appreciate all the responses so far, and would like to further discuss the last two (so many intelligent points), but I'm having a really rough night, I'm really sore even with percocet.
I don't know whether the endometrioma is leaking or what, but is it dangerous to lose an ovary if it ruptures? I know you can't give me a professional medical answer, I just don't know if I should call my gyn's office when it opens this morning or not. I mean, if anything has happened it's too late now, right?
About 24 hours ago, I was spotting (minimally). Now, I've had to take percocet to handle the pain that has come up rather suddenly. I haven't had to use it since I started birth control pills in October 2009. I was doing fine on just naproxen-type prescription meds from October until now.
Can this be dangerous? I'm pretty nervous. What would you do?
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Post by Karen on Feb 12, 2010 7:32:12 GMT -5
If something doesn't feel right, yes, you should call your doc right away. Who knows what it may be, and who knows if it's something to be concerned about, but if you're in that much pain, you really should get things checked out. Better to be safe than sorry!
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Post by hellsbells on Feb 12, 2010 14:19:17 GMT -5
Back to an earlier point, my surgery hasn't cured my endo, I may at some point in the future need another lap, but my geneal, everyday pain is easing off SOO MUCH!!! And psychologically, KNOWING what I'm dealing with now, rather than worrying/suspecting has changed my outlook so much. I used to have some very, very 'dark' days, now I sometimes get a bit p1ssed off but I feel tonnes better knowing what I'm dealing with, and being better equipped to deal with it.
So sorry you're hurting right now, it sounds truly horrible, hope you feel better soon xx
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Post by jjuls22 on Feb 17, 2010 16:42:03 GMT -5
hi, i just breezed through the comments, but my surgeries went 05 (endometrioma) 06 (endometrioma) 08 (hernia, adhesions) endo, isnt something you can avoid by not having surgery. My first surgery i could barely walk, i crawled most places, cried when i was in the car and we hit a bump etc. I was COVERED in adhesions. My second surgery, i chose to have b/c my endometrioma was 6cm and i didnt want it to rupture and cause more adhesions and damage to my ovary. When the surgery took place i had few adhesions, my surgeon was able to get the cyst out without a problem and i also had a cyst in my right ovary which he removed. i have yet to have an endometrioma return ( knocking on wood) my third surgery, i pretty much begged for the doctor to take my left ovary out b/c i was in so much pain. My bowels were tied up in adhesions but were easily freed. I also had a hernia which was part of my pain. i can understand your fear of going into surgery and surgery again and again, but it will help your body maintain some relief for quite sometime. IF it is endo, then you can go straight on lupron for 6-12 months to help kill any of the remaining endo and to keep it from coming back. sometimes the pain is just so bad, that your only relief is surgery. Now the pain you have been experiencing might have been the cyst bursting, you'll be in pain extreme pain for a good 6-24 hours and very sore for a couple days afterwards. Did you mention how large your endometrioma is? If they don't remove the cyst, it will keep growing back. I believe it if ruptures, there is still cyst wall left behind that could cause regrowth but im not sure. Do you have good health insurance? A lap can never turn into major surgery unless your organs are in danger, you can speak with your surgeon prior to your surgery and explain to him your wants and sign forms. Tough call, good luck!
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