One of the most frustrating things about endometriosis is that you never appear sick; people were always telling me how great I looked – I couldn't possibly be feeling bad. No one could understand that my insides were ravaged by this disease and that I was only a shadow of a person; life continued like that until my excision surgery in July of 2007.
Surgery is obviously the most aggressive fix for your pain but also your only hope for a pain free existence. Without my last surgery I would not be where I am today, as that was the only one done correctly. Unfortunately, to get it done right you need to see an Endometriosis specialist. Although you will find a ton of gynecological surgeons that will perform a laproscopy on you to remove endometriosis, few have the skill, technique and knowledge to do it correctly. They just don't want to admit it and they will tell you it is your lot in life, part of being a woman – blah, blah, blah. I have seen so many doctors that are unqualified idiots. Even the ones I liked were not equipped to handle a disease as complicated as endometriosis. They just don’t understand the nuances behind it. Many don't even recognize endo in all its forms in the body.
The only way to be diagnosed with endometriosis is through laproscopy and most doctors perform this surgery incorrectly. They’ll grab a laser and cauterize, ablate, fulgurate, burn or somehow try to destroy the endo lesions. They certainly destroy the surface of the lesions but they don’t get to the root of the endo implants and the endo just grows back, but as an added bonus after this surgery you will get tons of scar tissue on top of the lesions, which creates even more pain. Thanks laproscopy. You suck.
An endo specialist will excise the lesions cutting out the root of the disease. Most perform LAPEX which is laser excision and they will excise ALL unhealthy and abnormal tissue. Although the laser is just one type of energy that can be used, this surgery will take 3-4x as long as any previous surgeries you've had because they are so thorough and knowledgeable in the disease – this is what they do – excise endo. Most importantly endometriosis will only recur in 10-15% of patients that receive this type of surgery - almost 90% of women will have no recurrence.
Unfortunately, there are only about half a dozen endo specialists in the U.S. and women come from all over the world to see these guys. They are the most kind, caring, understanding, communicative doctors you will ever meet. The first time I talked to the guys in Atlanta I cried because a medical professional finally got it, a man no less.
So, here is a list of docs and their websites, check out the websites. They are obviously more informative than me.
Dr. Redwine – he is in Oregon and was the pioneer of this treatment: http://www.endometriosistreatment.org/
Dr. Cook- he is in Northern California: http://www.pelvicpain.com/
Drs. Albee & Sinervo- they are in Atlanta: http://www.centerforendo.com/
Dr. Robbins- he is in Maine and was my surgeon: http://www.advancedwomenshealthcare.us/
There may be more doctors doing this surgery now, but I would try to stick with one of these guys that I mentioned because they are the most experienced. It may be difficult to come up with the time and money to see these guys but it is well worth the effort. Many do not take insurance although Dr. Robbins did take mine. You may have to fight with your insurance company to cover the claim - but you will now feel well enough to handle this chore and this one surgery is much cheaper for them in the long run.
When I went to Maine to see Dr. Robbins, the day of the surgery I started my period was in excruciatingly mind-boggling pain - I was popping pain killers like candy. I woke up from the 4+ hr surgery with no pain. None! Certainly, I was sore after the surgery, and I took pain killers for about a week as prescribed but I have not taken any since. This is from a girl who got 30 pills of vicodin every month like clockwork for years on end, it was nothing short of amazing. Now I am totally drug free – if you told me that 3 years ago, I would never have believed it.
Although excision surgery will relieve your pain from endo you may still have pain. This is a result from the endo, because we cannot be in chronic pain for years on end without it affecting our bodies in other ways. But after dealing with endo this will be a walk in the park and I overcame it easily within 6 months of the surgery.
Keep in mind that the nutritional and diet advice listed are the methods I followed after surgery. I firmly believe this helped immeasurably. For instance, if I eat wheat (before the Celiac diagnosis) I do have endo-like pains: cramping, back pain, the feeling like your uterus is going to fall out of your vagina, and a crushing fatigue.
Surgery is obviously a huge decision and one that shouldn’t be undertaken lightly. Unfortunately (or fortunately?) for me the decision was one of the easiest I can remember. I would do it again 100 times out of a 100, my only regret is not doing it sooner.
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