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My Story Endometriosis Story

Endometriosis by Geordanna the Artist

I have been living with Endometriosis for 15+ years but was just recently (positively) diagnosed with stage IV during a laparoscopy this April 2010. I had never even heard of this disease until this year. I thank God for the internet bc the internet is what helped me better understand this horribly debilitating disease. I learned about my options and the best methods/doctors out there.

My life has always revolved around my intense cyclical menstrual pain and extreme fatigue--thinking it was just a burden I had to carry as a women.Now that I know its not my "duty" to go through this I am looking everywhere to find help. I def can't live like this forever!

Also, it has been now proven that my infertility is a direct correlation of my endo. At this point in my life all I want to do is be a mother so to be robbed of that choice is heart breaking. I am trying to stay positive and am hoping that through surgeries and fertility meds J and I can one day get pregnant.

The only other person that this has drastically effected is my poor husband J. We haven't even been married a year and I joke that we have gone through more in one year than a normal couple go through in a decade!

The cyclical pain, fatigue and emotional toll is unbearable at times but I know others are going through the same thing. I hope I can connect with those others that are going through or have gone through the physical and emotional roller coaster of this disease called endometriosis. I welcome anyone to "like" my page and I hope by being transparent and putting it all out there the world will start to take this disease much more seriously! No its not cancer. I cannot die from it but this disease, at times, makes me wish I could die. I want everyone to realize that just because I look ok on the outside doesn't mean I am not suffering.

I had my 2nd laparoscopy Sept 22, 2010 in Houston TX with Dr. Rakesh Mangal that actually tunred into a laparootomy becasue i simply had too much extensive damage. Dr. Mangal is a endometriosis specialist that uses CO2 laser excision and is VERY familiar with endo on the bowels and bladder. He believes that women with endo need a TEAM of doctors and specialist. He referred me to Dr. John R. Mathias a neuro-gastroenterologist who discovered I also have enteric nerve disease and put me on a strick diet and anti-seizure meds. he wanted me to calm my enteric system down before I had the surgery. I also have a Pain Management Specialist to better understand my pain and ALL my options since meds like vicodeine can actually make my symptoms worse.

During my surgery Dr. Mangal was accompanied by my colon-rectal surgeron, Dr. Pickron and a urologist because the endo on my bladder and bowels needed to be removed. I had two sections of my colon removed and my appendix removed. I had a medium sized cyst removed from my left ovary, had a D&C and stents placed.

I am also on the hormone progesterone to suppress my periods before and at least 3 months after surgery. Hormones and me DO NOT mix and it has been hell these last few weeks. CRAZY mood swings, crying, depressed, anxious, easily irritated, you name it I am going through it. I just don't feel like myself! I literally feel like I am going insane.

PAST: As far back as I can remember I have always had to miss at least 3 days every month of school or work. I have tried every kind of birth control pill (to regulate my period and minimize the pain but the pain only got worse) but my body simply is too sensitive and I can't stand them. For about the last 5 years my monthly pains have been getting progressively worse and worse. I now only have about 2 weeks a month that I feel good. The rest of the month I am either too fatigued, too emotional or in too much pain or all three! I have had over 10 doctors and the last 4 were just in the last 2 years! All the doctors before were dismissive and just kept telling me to get on birth control pills even though I would tell them that the pill just makes my symptoms worse. No one would listen. I finally got fed up because I knew there was something obvious wrong. The progression this last year (2010) has been significant. My health was deteriorating fast. I had to do something.

After the 8 Hour surgery, Dr. Mangal, came outside to talk to my husband and family letting them know that I had ALOT of endo and that I have been in excruciating pain for quite sometime. Although I do not doubt they knew I had been in pain I think it REALLY hit home when the doctor described to them in detail my pain and why. My mom started crying bc she felt so bad that she never knew it was THAT bad. Dr. Mangal also said that the endo had damaged my fallopian tubes. He said my ovaries and Uterus are great but he fears J and I would have a VERY difficult time conceiving naturally. Even if we do conceive naturally he is afraid of miscarriages and ectopic pregnancies (tubal pregnancies). So he advised that J and I do in vitro. So, That's where we are at now. I am set to see Dr. Mangal on my birthday Nov 3, 2010 to discuss our plan. Our window of opportunity is very small bc Dr. Mangal said the best chances for us to get pregnant would be 3-6 months after this surgery.

Post 8 hour Open Bowel and Excision Surgery for Stage IV Endo

September 22, 2010 I had major surgery for stage IV Endometriosis.

I was hoping it would be a few hours long and that laparoscopically would suffice but alas that was not to be. I now have a 9 inch "bikini cut" incision and after an 8 hours surgery this is what they did:

removed 3 "diseased" areas of my bowels (re sectioned with anastomosis), removed diseased appendix, excised all the endo from around my uterus, ovaries, and fallopian tubes, removed a large ovarian cyst on my left ovary, had a D&C and urinary stents placed.

It's been about a week now and I would be lying if I said this was getting better day by day. This has been the hardest thing I have ever had to go through.

I am only 28 years old, still a newly wed and haven't had children yet....

I plan on writing more but I am in just too much pain right now. I will try to write later today or tomorrow.


On a happier note: We got our wedding videos! :)

My poor husband has been amazing through all this. We have only been married about 10 months. I know this is something he definitely didn't not expect to be having to go through.

Here is the trailer:
J and Geordanna's Wedding Trailer