ENDO Messages for February, 2008: Re: Excision surgery with the 'specialists'

Re: Excision surgery with the 'specialists'

From: Debbie (anonymous@obgyn.net)
Sun Feb 24 14:59:04 2008

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I had excision with Dr Robbins in Maine in September. It was my third lap. After my second lap I was having increasing pain in my sacrum and hips and felt terrible so decided to go with Dr Robbins. He assured me, and virtually guaranteed me, that I would be pain free afterwards and could go and get on with my life as if nothing happened. Unfortunately that didn't happen. I had Endo all over my pelvic walls, both Utero-sacral ligaments, my Cul-de-sac and my right ovary. Following excision I started to have excrutiating pain in my hips and pelvis and also a "trapped nerve" type of pain in my sacrum. I found it almost impossible to do any kind of physical activity like cleaning the house, shopping, walking the dogs etc without terrible pain. After about a month of this I called him and he told me that he thought it wasn't anything to do with Endo and that it was most likely musculo-skeletal which I did not agree with. The crushing pain in my hips was worse before and during my period and absolutely excutiating after putting in a tampon. I felt partially disabled and very discouraged. Dr Robbins told me he wanted me to go to physical therapy but initially I didn't feel up to it. However, on the plus side, my back pain disappeared.

Instead, I started exercising....very gently at first. I was unable to run but I would walk on my treadmill and do light weights in my basement gym. Then gradually I started to increase the walking, and started running for a minute at a time. Run for a minute, walk for a minute, run for a minute, walk for a minute. After a while I was able to run freely. The real difference came when I started the Endo diet after reading the Dian Shepperson-Mills book, and had my appointment in London with her. After a month on this diet I have regained my energy levels and my pain is much less. I now work out vigourously 6 days a week and feel more agile and quite healthy. My moods have really improved and I've lost 7.5 pounds in just a few weeks too.

Dr Robbins did listen to my concerns and did refer me to physical therapy and I have agreed to go. The place I am trying to get into I have not been able to get through on the phone to, or I would have already set up an appointment, but I did promise him to go. He has called me several times since the surgery and does care enough to make those follow-up calls, but he says he is convinced that he removed all the Endo. I am glad that I had the surgery in that I know that all the disease is gone, and I certainly feel better. I felt like I was really sick before and now I feel more normal than ever.

All I can suggest is that you must try everything. Maybe diet and exercise would have had no effect if i still had the disease eating away inside me, and so I am glad to be rid of it. There are no guarantees in this. No doctor can have 100% success rate and you can't know how you are going to be until you have the surgery. I still think excision is a good thing to do, but it should be undertaken with nutrition and supplementation close behind it. Eating junk food and taking no exercise won't help if you're having a big surgery and so it makes sense to treat the body holistically. I have spoken to women who still have pain, and to women who are pain free after excision. You cannot gauge your success on theirs. This disease isn't going to go away and so every woman must do as much as she can to minimize symptoms and illness. Excision is still one of the best ways we have of getting this evil disease out of our system. I hope by sharing my story that I can be of help to someone.

-- Debbie =+=+=+http://www.angryuterus.com

At Thu, 21 Feb 2008, anonymous wrote: > >I'm trying to get an idea of how many others have had excision surgery >with one of the endo specialists (Redwine, Cook, Albee, Sinervo, etc.) >and still had pain (or other problems i.e, infertility) afterwards, or >from those that had a period of pain relief after a surgery, but then >the pain and other problems returned. How long was your period of pain >relief after excision surgery? Would you honestly refer another endo >patient to them? Was anyone able to conceive after a surgery? How did >the specialists/doctors treat you when you returned complaining of the >same ol' pain again? Was their reaction or attitude in regards to endo >being the cause again negative or positive? Did they refer you elsewhere >for treatment? (same or different treatments) How about those who have >had a total hysterectomy due to endo, and the pain is still a problem >for you? > >Thanks in advance to anyone that responds! I'm trying to make a decision >about which way to go now, after diagnosis of stage IV endo (had a lap) >with all the "normal" treatments (bc pills, anti-inflammatories, etc.) >The websites of these specialists sound almost too good to be true, and >I have heard from some other endo patients that had excision surgery >with Redwine and the CEC, whose pain DID return, and then they were >referred elsewhere by the specialists for treatment. I'm getting the >feeling that even these "specialists" don't know what they are doing. To >be practically guaranteed that you will be pain-free and able to get >pregnant, only to find it was not true, will be more than I can take! >Thanks!!

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