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View Full Version : Plagued by Endometriosis (sorry very long).



Raw To Live
11-18-2008, 08:47 AM
Hello everyone!
I'm looking for some advice, some personal stories, just some encouragement.

About four and a half years ago I was FINALLY diagnosed with endometriosis! I say finally because for YEARS I suffered in horrible, excrutiating pain only to be told that "All girls have some pain with their period" all the way to the pain is in my head!! I once shared with a doctor how I suffered in pain during intercourse and he told me I should go see a sex therapist to help me work out the aversion I had to my husband!!:eek: Oh, I've heard the gammut! I had pain because of the endo disease not because I had an aversion to my husband!! Finally, after about 3 years of trying to get pregnant and constant visits to a regular gynocologist, I saw a reproductive endocrinologist. When I explained my symptoms to him he said, "You have endometriosis written all over you". So, he did laproscopic surgery and discovered I had stage 3 of 4 for endo. He cauterized the endo at that time but cauterizing does NOT get rid of endo. Endo is like a cancer and it grows deep w/in your tissue. So, cauterizing just burns the top.

In May of 2006 I went in for more surgery. This time I traveled all the way to a specialist in Atlanta (I was living in the Northeast at the time) who excises the endo. Excising and Cutting as deep as is neccessary to get all of the endo out. They also took my left tube and ovary.

Still, I suffered from HORRIBLE cramps! I had been trying to get pregnant but was really getting tired of the PAIN all of the time. So, I sought out birth control pills and they have stopped the pain! They've also stopped my chances of getting pregnant but being pain free is addicting! I've been on them for over two years now.

Recently, I tried going off the birth control pills for one month and I was back to be in excruciating pain. I was miserable trying to complete a deadline at work that day and then I was out the next day. When I have cramps, all I want to do is drink HOT tea and lay in bed w/ my heating pad. Not meeting other peoples' demands.

When you're in the degree of pain that I was in, you can't hide it. It's written all over you!! It's not like trying to mask a leg ache or headache or whatever and my coworkers knew I was in pain. I also have been very forthcoming about my endo because I feel the word should be put out there as far too many women go through what I did and suffer to something that doesn't have a name to them.

So, then of course here comes the medical advice that I need to go back to the doctors. Make an appointment NOW. Boy, it was coming from all sides!! And I know they were just trying to be helpful because not too long ago I would have been "advising" people to call the doctor. . . now.

I tend to be a private person (I know you wouldn't guess that by the length of this post but I'm under the cover of anonymity ;) ) and I HATE for everyone to be up in my business so I resorted back to the birth control pills so I wouldn't have to go through that barage again.

I was ok for about two months and then all of a sudden I started getting crampy on my birth control pills. I was about a week into the pack and I started getting crampy. The thing is, I usually don't get a period at all on the birth control pills so when I started feeling crampy I felt like it was my body saying, "OK, we got to get this stuff out of here". So, I stopped taking the birthcontrol pills midweek and by Friday I was really cramping. Got my period on Saturday and was in horrible pain Saturday and Sunday. Came back to work on Monday and was deluged with more "advice". I cracked under the pressure and contacted my doctor.

I'll admit that I was surprised that immediately he wants to get me back in for surgery. I can't even say it's for the money per se. I've met my deductible for the year with chiropractic visits and they're willing to take whatever my insurance company gives. I have it in writing that I owe the doctor nothing. Now, the hospital and surgery and stay are a different story.

So, to close this Looooonnnnggg story. I don't feel comfortable at all with this idea but I'm sick of the pain and birth control pills as well. I've decided to give the raw foods diet a SINCERE try and I've been doing good for a whole two days. But, I need to decide what it is I need to do.

They say there is no cure for endometriosis. Is this one of the diseases that raw foods can't cure? They say they're going to cut nerves going from my uterus to my brain so that I won't *feel* the pain.

Let's say I don't go through with it. What am I supposed to do month after month when I'm missing time from work? I'm at work now so I really must close but I'll gladly answer any questions you may have to help me decide what I should do.

Thank you for your time.

Juicyfruit
11-18-2008, 09:14 AM
Raw To Live,

I am so sorry to hear about your pain! I was diagnosed with endo as well in my early twenties. They wanted to do the laproscopic on me as well, but I never went that far. I just dealt with the pain, as it was only around my cycle and sometimes during sex.

Since I have been on raw foods, no more pain. I have no cramping at all and the pain is non-existent. I am not 100% every day, but the main foods I avoid are grains and dairy.

I just wanted you to know that there is hope! Good luck with your journey! :)

Raw To Live
11-18-2008, 09:33 AM
Raw To Live,

I am so sorry to hear about your pain! I was diagnosed with endo as well in my early twenties. They wanted to do the laproscopic on me as well, but I never went that far. I just dealt with the pain, as it was only around my cycle and sometimes during sex.

Since I have been on raw foods, no more pain. I have no cramping at all and the pain is non-existent. I am not 100% every day, but the main foods I avoid are grains and dairy.

I just wanted you to know that there is hope! Good luck with your journey! :)
Thank you, thank you! {hugs}

I'm new to raw foods so when you say grains are you talking about nuts too? Or just things like quinoa, wheat, rye and maybe even corn?

I notice that alot of recipes call for nuts.

Thanks for your help! It means so much! Sometimes you really do feel like you suffer alone.

Green_Woman
11-18-2008, 10:55 AM
I, too, have dealt with the pain for years... recently, was admitted to the ER from the severity. I'm due for another cycle.

The docs don't KNOW that it's endometriosis yet, but they're running tests.

My mother had it, and believes I have it, too. It can actually be hereditary, I learned.

So...

I've been raw for 5+ months... and still get severe pain. I have NOT however been CONSISTENT at 100%, and I have cheated with grains/wheat/dairy at times throughout the 5+ months.

I believe in the power of raw to HEAL my body of ANY disease...

I just need to be consistent, and also - find something MORE within RAW that can promote the healing of this disease.


The pain is, truly, unbearable sometimes. Lots of tears, and yes, being with my wonderful man physically hurts like hell. :)

It's time to find a way out!!!

Nani
11-18-2008, 12:41 PM
Raw to live,

I also have Endometriosis. I was diagnosed when I was 18, I am now 37. I have thought of the same things as you....how will I cope while at work etc... I honestly haven't come up with any real solution. As of now, I am only working 3 days a week and thankfully my job is very forgiving and they allow me to take off when I need.

After many years of severe pain....during my cycle, sex, going to the bathroom, moving the wrong way, etc...and finally being admitted to the E.R. during Christmas last year for severe nauseating pain, (I found out I had a 8cm cyst rupture, along with me having a large "Mass", they didn't know exactly what it was, my Doc thought it was a large cyst).....My Doctor told me to stop eating dairy because of the estrogen etc.. We also talked about something called "Nattokinase". A form of Natto, which is fermented soy beans that has been dried and put into pill form. The Nattokinase is supposed to remove fibroid tissue...from cysts as well as Endometriosis!

After my X-mas incident, I went 100% raw and started taking Nattokinase...2 months later I went back to my Doc for an ultra sound...She said my "mass" was gone!! Poof!

Unfortunately I haven't stayed 100% Raw...but I am high raw and have absolutely noticed a big difference. I highly highly recommend trying out the Raw thing.....and cut out all dairy and meat....way too many estrogens for us Endo girls. ;)

I know that Natto and Nattokinase are not raw...so I hope this post doesn't get booted. ;) But it cant hurt to check it out.

I wish you many many blessings....and hope all works out for you. Just know that you are not alone!

Much love and support to a fellow sister in need. Xo

Nani
11-18-2008, 12:45 PM
Ohhh...one more thing....WHAT?!? Your Doctor told you to go to a Sex therapist because you had an aversion to your husband??? ACK!! :eek:

Doctors can be so stupid sometimes. :mad:

RawHeaven
11-18-2008, 12:51 PM
Ohhh...one more thing....WHAT?!? Your Doctor told you to go to a Sex therapist because you had an aversion to your husband??? ACK!! :eek:

Doctors can be so stupid sometimes. :mad:

They can also be extremely ignorant.

RawtoLive, I just wanted to wish you well. I had fibroids before going raw and they are gone. I believe everything can be healed with raw foods. Everything. It's not so much the food that is healing you, but you're giving your body a chance to heal by your actions and providing it with consistent high quality nutrition etc.

Raw To Live
11-18-2008, 01:36 PM
Thank you all for your replies!

I just don't want to cause my body more trauma by undergoing surgery and cutting nerves. But then I think if this will end the pain. . . .

I just don't know what to do. They want to do the lapro surgery on 12/22.

Juicyfruit
11-18-2008, 02:35 PM
Thank you, thank you! {hugs}

I'm new to raw foods so when you say grains are you talking about nuts too? Or just things like quinoa, wheat, rye and maybe even corn?

I notice that alot of recipes call for nuts.

Thanks for your help! It means so much! Sometimes you really do feel like you suffer alone.

Regarding grains, the reason I avoid them is because of the gluten and anti-nutrients. There are some gluten free grains, like rice and corn. I've heard that sprouting uses up the gluten, but I am not sure. I just avoid them as for me they aren't a prime food, like fruit and such. Gluten is a protein that is very hard for the body to break down and I've read studies that show that is what causes the cysts and such to build up in our bodies. Same thing for the casein in dairy products. It's a very sticky protein that is hard to break down as well. Nuts are not included. I've been studying a lot about the human diet, and our stomachs are not made to break down grains or dairy products. You can Google the subject and find a wealth of info.