Discussions By Condition: I cannot get a diagnosis.

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Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: Anonymous
  • January 26, 2007
  • 01:55 AM

I am a 30 year old female that has just had a laparoscopy to remove endometriosis 7 weeks ago. it all began when I began spotting then developed pain esp. on my left lower abdomen. The pain is sharp, like a cutting and stinging. I then miscarried and I still have constant pain. Originally doctors thought I had a hernia- had abdominal wall ultrasound- found nothing. Then colonoscopy- all clear. Then finallt the laparoscopy which found endo. which would explain the miscarriage. But still have the same pain that begain 6 months ago. No urinary track infection either. Periods are very painful but not too heavy but the sharp burning pain is constant. Feels like something is pushing my stomach and onto my bladder after a meal or a big glass of water. Now have also had a MRI abdomen scan and found nothing? So far doctors and specialist are puzzled. Gyno believes getting pregnant will stop pain- but what if it is something else? Please help.

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  • my guess is that there is still some endo tissue and what he did remove wasnt causing you pain (yet). Pregnancy will take care of the pain becoz you will be getting lots of progesterone, however after the pregnancy pain will return. See a gyn who is willing to work with you and natural methods of endo control such as natural progesterone cream. Synthetics have an awful reputation along with birth control pills for endo becoz they coz estrogen dominance (which is what caused the endo in the first place). Good book is Natural Hormone Balance by Uzzi Reiss - appendix even gives help in finding the right gyn
    Anonymous 42789 Replies
    • January 26, 2007
    • 05:37 AM
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  • I don't want to scare you but most likely the Endometriosis has come back or the surgeon who did the Laparoscopy did not get it all. The reason why I say this is because I went to a very good surgeon. He was even on 60 minutes several years ago & even works at a teaching hospital in Florida (He has been practicing I think it was since 1974 or something like that). He immediately diagnosed me with Endometriosis with one consult & they had me set up for a Laparoscopy (Laser Ablation) within 2 weeks because I was in so much pain. He did an excellent job & I was back to work within no time. However, my pain started coming slowly back again in about 2 months & got worse & worse from there. I ended up having to go to Georgia to get excision surgery. When that surgeon went in to do the surgery pratically all the spots that was excised from the first surgeon had grown back (I know because I have the pictures from both surgeries). I had my Laparoscopy (Laser Ablation) in April 2006 & my excision surgery November 2006. The surgeon in Georgia said that most surgeons miss Endometriosis (If they are not specifically trained to do that type of surgery) on the bowel, bladder, etc. And, Laser Ablation usually does not work for very long & because of this they only laser the top layer & do not get deep enough causing it to show back up sometimes as early as 3 months (I was one of the ones where it came back quicker). I honestly think that everyone should definitely have excision surgery (Of course if you have the insurance to be able to do that---I had to fight with my insurance to have it) to get rid of all the Endometriosis. Of course there is still a 10% it will come back. But I think that percentage far outweighs the Laser Ablation. Also, if the surgery goes well (of course you want a very good surgeon) it will not come back for at least 5 years or so. I think those chances are very good.
    Anonymous 42789 Replies
    • January 26, 2007
    • 11:13 PM
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  • What was the name of your surgeon in Georgia? How did you get his name and where did you learn about uterine excision? Thanks a lot - I'm in a similar boat.
    Anonymous 42789 Replies
    • January 27, 2007
    • 01:08 AM
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  • endometriosis is hard to get rid of, and I also agree with the next to last post - it often comes back. Some think endo could be caused by candida overload - worth checking into and see if it "fits". Please visit www.candidasupport.org and www.wholeapproach.com for info on candida. I recommend acupuncture to help with the endo and especially the pain. If you can find one who also specializes in Chinese herbal medicine it would be very helful. I have treated women in my clinic with severe endo symptoms and it has been very successful! Please consider this as a viable treatment. To find one near you please visit www.acufinder.com and type in your zip code. Lots of luck.DOM
    acuann 3080 Replies
    • January 27, 2007
    • 01:29 AM
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  • Very good points, just above. Balanced organs provide appropriate amounts of progesterone compared to estrogen. Endometriosis is actually estrogen dominance - not enough progesteronecompared to estrogen. The ratio is most important. Endo reappears because the cause was not dealt with, only the symptoms were. Systemic Formulas of Ogden, UT make some excellent formulas to help organs heal the best they can. Call them to find a practitioner near you. And accuann you may appreciate this - Systemic Formulas were developed by a "Doc" Wheelwright that was the first to measure resonant frequencies, or vibration rates, of organs. He then blended herbs to match the frequencies of specific organs to essentially provide a "blueprint" for the organ to model itself after. I would really like to see acupuncture and Systemics used at the same time to see if and how much the healing rate and quality of healing are made more effective being used together.
    Anonymous 42789 Replies
    • January 27, 2007
    • 01:45 AM
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  • I went to the Center for Endometriosis Care (CEC) in Atlanta, Georgia. My surgery was done by Dr. Sinervo (there is also Dr. Albee). You can find it pretty easily on the web. There are a few (only a few) other doctors in the state that do excision surgery. There is one in California & one in New York (& a few more that I cannot remember right now). If you need to know I will find out for you & let you know. I have my hypothesis myself & I too think that too much yeast in the body has something to do with contributing to Endometriosis. I do feel though that you should have all the implants excised first & then go (immediately afterwards) on a yeast free diet. And, remember the reason (or at least this is my hypothesis) a person gets Endometriosis (they of course have several theories right now) is because of too much Estrogen. And, too much Estrogen is because of too little Progesterone. This is all regulated by the ovaries. Therefore, someone having all the problems could have an underlying problem with their adrenal gland, pituitary gland, thyroid gland, parathyroid gland, liver, etc. And of course you could be having problems with these glands too due to a yeast overload. Yeast can cause you to get rid of alot of your good bacteria which completely messes up your whole body & organs. I am not a doctor though. I am however trying my best to find out what causes Endometriosis. I do know they also think that most who have it have an immune system problem to begin with & might have other underlying diseases or disorders too. Another thing, I would advise (Unless you have to have it in rare circumstances) against the HRT for Endometriosis. I have heard really bad things about the side effects & after effects that they can cause. That is why I chose excision surgery instead of Hormone Replacement Therapy.
    Anonymous 42789 Replies
    • January 27, 2007
    • 03:40 AM
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  • http://www.bpharmacysolutions.com/hormone/overview.aspThis is a compounding pharmacy that after a phone consultation will send you a saliva test to detrmine the level of your hormones. Once it is tested, they suggest a formula for you individually. You can then bring this to your gyn for an RX and then you send it back to them. If your gyn won't, then they have a list of of doctors they work with that you can go to. You are then sent bioidentical hormones that are NOT synthetic and balanced for your system.It is very important to deal with the underlying causes of endo, because estrogen dominance can lead to breast and uterine cancer.
    Anonymous 42789 Replies
    • January 27, 2007
    • 05:42 AM
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  • As I posted above, endo is too much estrogen compared to progesterone.I am a doc in the natural health field, and it really does annoy me thattraditional docs are still cutting females open and relying on surgery to treat symptoms when there are good ways to deal with this. And mentioning the liver health is very good, too. There are so many chemicals in our environment now that mimic estrogen that the liver can get overloaded in its job of recycling estrogen. This then leads to estrogen dominance >> endo >> drags the thyroid down so energy can get pretty low, too.
    Anonymous 42789 Replies
    • January 27, 2007
    • 05:42 AM
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  • I went to the Center for Endometriosis Care (CEC) in Atlanta, Georgia. My surgery was done by Dr. Sinervo (there is also Dr. Albee). You can find it pretty easily on the web. There are a few (only a few) other doctors in the state that do excision surgery. There is one in California & one in New York (& a few more that I cannot remember right now). If you need to know I will find out for you & let you know. I have my hypothesis myself & I too think that too much yeast in the body has something to do with contributing to Endometriosis. I do feel though that you should have all the implants excised first & then go (immediately afterwards) on a yeast free diet. And, remember the reason (or at least this is my hypothesis) a person gets Endometriosis (they of course have several theories right now) is because of too much Estrogen. And, too much Estrogen is because of too little Progesterone. This is all regulated by the ovaries. Therefore, someone having all the problems could have an underlying problem with their adrenal gland, pituitary gland, thyroid gland, parathyroid gland, liver, etc. And of course you could be having problems with these glands too due to a yeast overload. Yeast can cause you to get rid of alot of your good bacteria which completely messes up your whole body & organs. I am not a doctor though. I am however trying my best to find out what causes Endometriosis. I do know they also think that most who have it have an immune system problem to begin with & might have other underlying diseases or disorders too. Another thing, I would advise (Unless you have to have it in rare circumstances) against the HRT for Endometriosis. I have heard really bad things about the side effects & after effects that they can cause. That is why I chose excision surgery instead of Hormone Replacement Therapy.Thanks so much for the information. I'm in Florida. Do you know of anyone here?
    Anonymous 42789 Replies
    • January 27, 2007
    • 05:45 AM
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  • There is no one in Florida. The closest one is the doctor in Atlanta, Georgia. I too am from Florida & that is where I had to go.
    Anonymous 42789 Replies
    • January 27, 2007
    • 05:39 PM
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  • Good points, Ralph. I still believe that candida may be an underlying concern as it can disrupt hormone balance and can mimic many autoimmune disorders. A yeast free diet is good, but not enough. You need to kill the overgrowth and this takes time - 2 months minimum. The food list found on www.wholeapproach.com is one of the best ones I've found and also works for gluten intolerance. Good natural candida cleanses are Threelac, caprycilic acid, wild oregano oil, and there are others. It is important to try two different cleanses as the fungus gets used to one and it ceases to be effective. Please take a proactive stance with your disease. Unfortunately even the best surgeons in the country are only able to give temporary relief, as they are not able to get to the root cause of the problem. This is my biggest beef with Western allopathic medicine. Best of luck to you.DOM
    acuann 3080 Replies
    • January 27, 2007
    • 06:04 PM
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  • I have been one of the ones speaking about the doctor that I went to in Atlanta, Georgia that did the excision surgery for Endometriosis. To the person who is posting all this information about yeast. I really want to start a yeast free diet but do not know how to begin. I have been holding off because to begin with I just feel toooo tired & I do not have alot of money to buy a whole new grocery store in my house. Of course, my husband thinks that the yeast thing is obsurd. We eat out about 3-4 times a week. Most of those times of course it is not fast food but it is still eating out. I REALLY want to try to go off yeast completely. What steps should I take? Just wondering how you did it?
    Anonymous 42789 Replies
    • January 28, 2007
    • 02:53 AM
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  • My 16 year-old is suffering horribly. Had a laparoscopy in early Dec., and after 2 cycles, things are probably worse, not better. The gyn. we were using does not really seem to know that much about endometriosis, frankly (for instance, doesn't think nausea/constipation could be related) and didn't even look at the bowel during the surgery.Our daughter has other health problems (like many of you) including a type 1 diabetes diagnosis 12 years ago, and is on an insulin pump. The endo affects blood sugars, and so do hormonal treatments. We lean toward surgery as a preferred treatment, as a result.For the person who had surgery in Atlanta: Can you tell me who is in NY? Is there anyone in New England (we are in Mass., and our insurance covers New England)?As for yeast, our teenager was treated for yeast found throughout her gut a couple of years ago. She took llarge amount of fluconazole and nystatin for almost a year, as well as aacidophulus. She is on a pretty limited diet, for yeast and for food allergies. The endo doesn't seem to be improved by any of this.Thanks!
    Anonymous 42789 Replies
    • January 29, 2007
    • 01:01 PM
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  • As for yeast, our teenager was treated for yeast found throughout her gut a couple of years ago. She took llarge amount of fluconazole and nystatin for almost a year, as well as aacidophulus. She is on a pretty limited diet, for yeast and for food allergies. The endo doesn't seem to be improved by any of this.--Google flucanazole and nystatin for side effects and you will be amazed - these Western antifungals are very toxic to the liver!!! I don't recommend them. As I posted before, www.wholeapproach.com has a food list you can download and try to follow. An anticandida diet is ridiculously hard to follow at any length of time. This is why I recommend Threelac, as it works to kill overgrowth but you don't have to really change the diet - it will still work. Of course limiting trigger foods as much as you can will help. Google Threelac for more info. This stuff is a bit expensive, but it is worth it and has a money back guarantee! Also, please read my other posts concerning acupuncture and Chinese herbal medicine for endometriosis. It is very helpful! Hope this helps,DOM
    acuann 3080 Replies
    • January 29, 2007
    • 03:13 PM
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  • My daughter's yeast issues were diagnosed by endoscopy. They were only one small part of a larger picture including diabetes, very positive autoimmune labs, low thryoid, and GI discomfort bad enough to make eating difficult. even impossible.Her care has been directed by an integrative medicine doctor who looks at the big picture, and getting rid of the yeast was an essential goal to help her body deal with a lot of things. He did immune support, natural anti-inflammatories, probiotics,and she learned meditation. The diabetes necessitated an aggressive approach, and the fluc./nystatin helped a lot with healing. The MD monitored her liver. The treatment worked and she has been yeast free for two years.We have suffered enormously at the hands of Western medicine practioners, but, at the same time, my daughter would have died a long time ago w/out Western allopathic meds (insulin!).In terms of endometriosis, there are a lot of different points of view on the best approach, and each individual has good reason for her own choices. I won't go into detail here, but my daughter and I have decided that surgery combined with alternatives might be the best way to go. She takes bioidentical progesterone cream, but wants to avoid many of the hormonal treatments used by some MD's (esp. lupron). The best known MD for teens in Boston is reputed to be big on Lupron. I am thinking about Dr. Cook in CA or Dr. Rock in Ga., and am desperate for referrals to good MD's for endo (for teens, esp.) in Massachusetts- or New England.What we are looking for is an MD who will see the endo as part of the "big picture," a cluster of problems that many patients apparently have (low thryoid, migraines, food allergies,frequent infections, autoimmune stuff). We are not looking for easy answers, or cures, just someone who will spend the time to get ot know my daughter's particular situation and needs. Dr. Cook talks about endo as a "multiple disease syndrome" on his site. But Dr. Cook is across the country and not covered by our insurance!We would like our daughter to be able to go to college. She is a talented student, actress, musician and, especially, composer (she just won a state-wide competition for composers) and we hope this illness does not ruin her chance to grow and develop during this phase of her life. Right now, it is ahving an enormous impact on school attendance.
    Anonymous 42789 Replies
    • January 29, 2007
    • 03:55 PM
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