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Post by jennapurr79 on Oct 12, 2006 14:01:14 GMT -5
Okay,
I know that there are a lot of women who have had the lap done, but is it really worth it? I've read a lot of stories about women not getting relief and still having the pain. If they aren't reliable, is it okay to just take the medication to suppress the symptoms? Maybe I am just looking for a way out of having this done, but I am terrified of surgery, I've never had one before and I don't want to go through surgery if it isn't going to help. Has anyone just gone with drug therapy and not the lap? Or do I just need to face the fact that a lap is necessary?
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Post by mwilmot on Oct 12, 2006 18:47:38 GMT -5
Personally I think the laps are so worth it to be pain free for a while. At least I am in that situation. Pain from surgery is bad but it goes away and pain from endo is here all the time. Everyone is different with surgery - some the pain goes away after surgery and others still have endo pain after. I was so sick of being in pain that I finally did surgery and I'm so glad I did. Life is so much better.
If you are thinking of drug therapy make sure you read some of the threads about the different drugs out there.
Either path you choose make sure you are well educated with your options.
I have a great endo doctor/surgeon recommendation for CA if you are in need of one (near SF). I'm not sure where in CA you are located.
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Post by erzulie on Oct 12, 2006 19:50:20 GMT -5
I didn't get so much as a day's relief from pain after the surgery, but I still feel glad I did it. This way I know for sure what's wrong, and I know where the endometriosis was found and how bad it was. I know what sort of damage there was (nothing major, but I know what to be concerned about if I start feeling worse) and I know it isn't cancer (not that I thought it was, but ovarian cancer has very similar symptoms so it's good to be sure). I think it was worth it that once to learn all of that, but I don't plan to go through it again until I can get excision done, unless my symptoms change. If your symptoms change you should DEFINITELY have a laparoscopy because that could mean that it is doing damage or that it is turning into cancer.
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Post by ouchy on Oct 12, 2006 22:31:13 GMT -5
Yup. I agree w/ erzulie. And you can also find out during a lap if the endo is tying your internal organs together! Yikesssss! ....sometimes you need them freed before it is too late and you have to have major surgery!
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Post by jennapurr79 on Oct 13, 2006 2:15:37 GMT -5
I guess there is really no way around it and what you guys have said makes sense. I have an app. on the 18th so I will talk to my doctor about it and let you guys know what he says. Are there any questions I should ask him regarding the surgery? Do they usually only scope out the reproductive organs or do they look in the colon etc?
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Post by ouchy on Oct 13, 2006 9:32:38 GMT -5
Are there any questions I should ask him regarding the surgery? Do they usually only scope out the reproductive organs or do they look in the colon etc? Yup! Check out this thread entitled, "THINGS TO ASK YOUR DOC BEFORE HAVING A LAP." (Please post all questions regarding questions to ask on the "THINGS TO ASK YOUR DOC BEFORE HAVING A LAP" page. Thanks Link: cjlevett.proboards33.com/index.cgi?board=surgery&action=display&thread=1149454617
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Post by ouchy on Oct 13, 2006 9:39:50 GMT -5
Yup. From what I have read, a thorough examination of all visible internal organs is performed, but wouldn't hurt to double check!
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Post by macymoo on Oct 18, 2006 15:07:33 GMT -5
Hello, I have also been trying to avoid a lap, you should read my long winded posts!!
I asked my Dr for 6 months to see if I can make any improvements myself.
My Dr says he is 99.9% sure I have endo after an MRI scan and raised CA-125 levels in my blood, I also had an internal ultrasound.
I have been doing my regime for about 3 weeks or so and I have found a major improvement with my pain. My energy is also much better.
This is what I am doing....I don't know yet if it has made any difference to the cysts but it is eraly days and I am quietly hopeful that it will work.
My regime: No Wheat, No Dairy No Tomato No potato No Chocolate Organic meat only
Instead of wheat, I am eating lots of other grains i.e oats. Instead of dairy I use rice milk Instead of tomatoes I use flavourings like onion (caramelised) and balsamic vinegar etc instead of ketchup. Instead of potato I have sweet potaoes and rice and quinoa and sometimes just veg without the major carbs.
I take supplements: Vitamin C 1000mg twice a day 1 one a day supplement An extra multi mineral (calcium and mangnesium) B12 Calcium-D-glucarate (only just started taking this) Bio-dim (only just started taking this) Enzymes with every meal VSL3 (strong probiotics) Spirulina (a very good make of it)
I also take homeopathy in water which assures I drink at least a litre and a half of water a day I put in this water: Sepia Bella donna Ovarial cyste (a hometoxicology remedy)
I take herbs in liquid form: Agnus castus (chaste berry) Licorice root I take both 30 drops 3 times daily.
I have also got myself a castor oil pack and I eat lots of fresh vegtables and fish. I eat a very oaty healthy breakfast in the morning and add this special mix of seeds i.e sunflower, linseeds, pumpkin, sesame. I also put lots of cold pressed olive oil and crushed seeds on all my main meals.
I will keep you informed of my progress. I haven't had my next period yet and that will be the real test to see if the pain has gone. I started taking all this on the first day of my last period so I still had the normal pain during that period but instead of bleeding for 10 days I only bled for 5 and the pain I usually get all the time in between periods seems to have gone so far. I am not assuming anything has changed inside nor am I excpecting a miracle but if I can make a small difference then even if I have to have the lap done at least I have a plan for after the lap to help prevent the endo and fibroids getting worse.
Let me know if you have tried anything that has worked.
Thanks
leanne
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Post by katie35 on Oct 19, 2006 6:58:07 GMT -5
I had to have the lap to find out if I had endo or something worse. I did find relief for almost a year after the surgery and lupron. I started slowly noticing the same old symptoms returning. In my eyes having a lap is a good thing though, because it lets the Dr see exactly whats going on and then they can treat it in the best way.
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Post by jennapurr79 on Oct 19, 2006 18:30:52 GMT -5
Hello, I have also been trying to avoid a lap, you should read my long winded posts!! I asked my Dr for 6 months to see if I can make any improvements myself. My Dr says he is 99.9% sure I have endo after an MRI scan and raised CA-125 levels in my blood, I also had an internal ultrasound. I have been doing my regime for about 3 weeks or so and I have found a major improvement with my pain. My energy is also much better. This is what I am doing....I don't know yet if it has made any difference to the cysts but it is eraly days and I am quietly hopeful that it will work. My regime: No Wheat, No Dairy No Tomato No potato No Chocolate Organic meat only Instead of wheat, I am eating lots of other grains i.e oats. Instead of dairy I use rice milk Instead of tomatoes I use flavourings like onion (caramelised) and balsamic vinegar etc instead of ketchup. Instead of potato I have sweet potaoes and rice and quinoa and sometimes just veg without the major carbs. I take supplements: Vitamin C 1000mg twice a day 1 one a day supplement An extra multi mineral (calcium and mangnesium) B12 Calcium-D-glucarate (only just started taking this) Bio-dim (only just started taking this) Enzymes with every meal VSL3 (strong probiotics) Spirulina (a very good make of it) I also take homeopathy in water which assures I drink at least a litre and a half of water a day I put in this water: Sepia Bella donna Ovarial cyste (a hometoxicology remedy) I take herbs in liquid form: Agnus castus (chaste berry) Licorice root I take both 30 drops 3 times daily. I have also got myself a castor oil pack and I eat lots of fresh vegtables and fish. I eat a very oaty healthy breakfast in the morning and add this special mix of seeds i.e sunflower, linseeds, pumpkin, sesame. I also put lots of cold pressed olive oil and crushed seeds on all my main meals. I will keep you informed of my progress. I haven't had my next period yet and that will be the real test to see if the pain has gone. I started taking all this on the first day of my last period so I still had the normal pain during that period but instead of bleeding for 10 days I only bled for 5 and the pain I usually get all the time in between periods seems to have gone so far. I am not assuming anything has changed inside nor am I excpecting a miracle but if I can make a small difference then even if I have to have the lap done at least I have a plan for after the lap to help prevent the endo and fibroids getting worse. Let me know if you have tried anything that has worked. Thanks leanne Where do you get your organic meats? I can never find them in my grocery stores! This seems like such a complicated routine. How did you come up with it? I can't eat oats of any kind or my stomach will go berzerk on me. I also can't eat fruits or veggies without getting sick...actually I can't eat anything without getting sick. The closest I can get to feeling okay is eating Foster Farms chicken only. Any other brand of chicken kills me as does red meat. Unless a miracle happens I won't even have the option of having a lap so I need all the help I can get.
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Post by erzulie on Oct 19, 2006 20:10:04 GMT -5
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Post by macymoo on Oct 21, 2006 5:09:48 GMT -5
If you can't stomach things without getting sick I would definately get yourself some good probiotics (try not to get the ones with fructoogliosides as these are basically sugars that feed the bacteria but they caused me problems) The best probiotic on the market is VSL3 and it really works. The second bit of advice is you should take Enzymes with every meal as this helps breaks down the food for you. The probiotics also help with absorption. I would also take a good multi mineral/vitamin. Watch out about eating too much fruit especially near a main meal unles you eat it first. I have been training to be a nutritionist for the past 2 years...1 more year to go. also I have done lots of research and accumated all things for endo. I had a food intolerance test done Via a Blood test...none of this other testing stuff. This is a clinical test that looks for antibodies IgG's against certain foods. When your body had made IgG's to a food or substance it sends the immune system into action trying to kill it, attacking your organs and digestive system in the process, so by removing those foods your immune system stops causing inflammation and damage. If you have a true allergy you get IgE antibodies if you have intolerances you get IgG antibodies which although it is a lesser reaction it still causes the body to try and attack what it percieves to be foreign bodies in its system. The test is called the ELISA test and is done by YORK tests her in the UK but I am sure you have it in the US
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Post by needadvise on Oct 21, 2006 5:51:14 GMT -5
iam also avoiding the lap at all costs, hoping i don't have endo as my dr. can't say for sure he'd get in there and find it, but based on my symptoms, and my family history he's about 80% sure i got it, but my obgyn thought i had pcos and not endo, but turns out i don't have pcos and likely endo. i have always been healthy before, and manage with my pain very well. i used to have just pain during periods, and now i got it from O time- the end of my period, and right now iam a week post my period, and i feel like i have a bad UTI, but i always get a negative result even if it feels like bladder plain UTI.
ovarian cancer runs alot in my family. iam only 31, but i wanna get a blood test done that assess my personal risk, but i just have to schedule it. i had a HSG a few years ago, but before i consider getting cut, and going under like that, iam going to get that test again, and whatever else needs be, before a lap. just to make sure my pain isn't stemming from elsewhere. i can still function, but during periods i must take darvocet. i had a baby 14 months ago, and the pain has gotten worse since then, during monthly cycles.
iam afraid of general anestehia, cause i woke up while getting my tonils out 10 yrs ago, and iam afraid of the risk, and the scarring, as what he described to me, doesn't sound so pretty. he told me no to an MRI, that it wont show anything, is that true? my u/s shows nothing, but i know the lap is the only 100% way.
we needed clomid and iui to have our baby, eventhough no endo was suspected then, we just had unexplained infertility. iam hoping to get pregnant again naturally, i hear some women with endo can, and some have troubles, but he's not 100% i have it, and he said if it's bad, aside from 3 cuts, he makes a c-section like scar. i have avoided a c-section several times in life, and i have a low self esteem, so i'd really be upset waking up and seeing that, or waking up wondering what they found, i can't imagine my fear. *eek* so don't feel alone, you aren't the only one looking for any other way out then the lap.
is there any blood work or anything where they can see where your risk of endo would be raised, or it's just symptoms, history, and a must look inside and see? are there no markers for it?
thanks, i know iam a wuss! lol. i guess if the pain became unbearable, i'd have no choice. he ssaid i don't have to get the lap and it may or may not get worse, but he can't promise that i do have it eigther, so i wanna check everything else out first.
hugs
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Post by ouchy on Oct 21, 2006 12:24:38 GMT -5
. he told me no to an MRI, that it wont show anything, is that true? my u/s shows nothing, but i know the lap is the only 100% way. Yup. MRI and ultasound are not meant for detecting endo. In some cases adenomyosis (endo of the uterine wall) can be seen on an MRI, but even then it's not that helpful. My ultrasound didn't show anything remarkable, and my intestines were all tacked over to the side. You are right that lap is the only 100% way to diagnose it!
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Post by macymoo on Oct 22, 2006 4:25:37 GMT -5
Hi, I don't have ovarian cancer in my family but the fact that you have makes it a more risky choice for you not to have a lap. My Dr said to me that CA-125 is both a cancer and endometriosis marker. Mine was raised but not very very high, he said to me that if it was really high that would be an indictation of cancer as opposed to endo. Have you had this blood test? I am aslo worried about cancer which would be the only reason why i would have a lap but my dr says it is highly likely I haven't got cancer.
I have lots of stomach probs too and my other dr wants to do a colonoscopy and gastroscopy so if I do go undr anasethic I will have it all donea t the same time. I just hope by some miracle it all resolves itself.
L
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