ENDO Messages for January, 2007: Re: At a loss

Re: At a loss

From: Erica (anonymous@obgyn.net)
Wed Jan 17 17:23:30 2007

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It was really hard for me to read your post because I can hear the frustration and desperation in your words. I was diagnosed about 2 and 1/2 years ago with stage 3 endo. I had two laparoscopic surgeries like you within a year and although I had received treatment in between including continuous birth control pills and two Lurpon injections, the endo was infact worse when they went in the second time. I've also tried Megace and tried to give Lupron another chance because I was told by my doctor that I really have run out of options because nothing was helping my pelvic pain. Well the Lupron caused terrible side effects and I'm now back on birth control pills and will probably stay on them. I'm sorry to hear that you have a blood clotting disorder. As far as having a hysterectomy- that may not even cure your symptoms especially if you have endo in other places like your bladder, bowels, cul-de-sac, etc (and there are many on this forum who can atest to having had a hysterectomy only to have no pain relief!) I like you have been taking pain killers practically every day and have built a tolerance. I'm guessing you probably have bowel problems which are made worse by the fact that you take the pain killers (i.e. constipation). I will tell you that I did see a slight decrease in my symptoms with a change in my diet. Now its hard to tell you how to change your diet b/c some things work for some and others don't. I would recommend you reading Mary Lou Ballweg's "Endometriosis:The Complete Reference for Taking Charge of Your Health." Many of the websites I've read and this book suggest that dairy, caffeine, refined sugar, alcohol, wheat, and/or yeast can all contribute to increase in endo symptoms.

I use to be a daily coke drinker and loved sugary foods and ate alot of cheese. For me cutting dairy was a big one and I also cut back on sugar (didn't cut it out) and cut out coke. As well as increased my raw fruit/vegetable intake and increased the amount of water I drink per day. I have to say it helped me (and many others also claim diet changes work) but its hard to find what your food allergies or triggers may be. Again read that book, look on various websites. You may need to keep a food/pain diary for awhile to notice a pattern. Other suggestions are drinking green tea and trying to drink Noni Juice which aids in digestion but Noni juice is pricey ($30 a bottle). I hope you find something that works even a little for you. I'm currently looking into acupuncture treatments b/c I've read many have had success with this.. At this point I'm willing to try anything...

At Wed, 17 Jan 2007, anonymous@obgyn.net wrote: >
>I am at a total loss. I was diagnoised with endo four years ago. I
>have already had two surgeries, the first being a lapotomy four years
>ago where they diagnoised me with level 3-4 endo. The second a
>laproscopic less than a year ago where once again the endo was
>everywhere. I can not take birth control as I have a blood clotting
>disorder and the bc will literally kill me. I am now in the posistion
>of going back in for a third surgery. No doctor or so called
>"specialist" has any answers for, they have no fix or even thoughts on
>how to slow down the growth of the endo. I am only 31 years old and I
>want children so a hysterectomy is OUT of the questions. Does anyone
>have any advice as to how to slow down the growth of endo
>naturally/reduce this insane pain naturally. I am so tired of taking
>pain killers my tolerance is ridiculous at this point.
>Please any suggestions at all, I am at my wits ends and every doctor is
>throwing their hands up because I can not be cured so they are
>frustrated! they should spend a month in my shoes....

--
Erica

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