Monday, March 7, 2011

Endometriosis Awareness Month

March is Endometriosis
 Awareness Month
If you know me, you probably know about my experience with, or at the very least that I have, endometriosis.  It's a painful condition which the tissue that behaves like the cells lining the uterus (endometrium) grows in other areas of the body, causing pain, irregular bleeding, and possible infertility.  The tissue growth (implant) typically occurs in the pelvic area, outside of the uterus, on the ovaries, bowel, rectum, bladder, and the delicate lining of the pelvis. However, the implants can occur in other areas of the body, too. (definition from PubMed Health)

The cause of endometriosis is unknown.  March is endometriosis awareness month.  I highly suggest heading here to find out more about the disease and who it's affecting (8.5 million North American women and teens, and totaling 176 million worldwide).

I have recently joined a group on facebook to be of support and to be supported, and have been hearing what sounds mostly like hopelessness.  I wanted to share my experience thus far, to give some sort of optimism, at least.  Reading the stories of the group made me realize how lucky I've been in my situation.  I know all of our stories are different, but maybe someone can be comforted by my journey thus far...

I'll put the rest under a jump.  **WARNING:  There will be one (not graphic to me) picture of my "franken-belly" after my first surgery and talk about girl parts and periods after the jump, so boys-- feel free not to jump.  :)

I dealt with endo for as long as I can remember—I have horrible, gross and embarrassing stories that some of you have probably experienced, as well.  I wasn’t diagnosed until I was 21.  I was referred to an endometriosis specialist after seeing a GYN who thought my symptoms sounded familiar.  For the first year and a half, they resorted to “pain management” techniques (aka different types of birth control pills and vicodin).  It was only after a year and a half that I asked if I could be taken off of the vicodin, since it took at least 5 (5 mg) lortabs to make any pain fade.  My doctor agreed to placing me on a non-narcotic and doing the laparoscopy surgery. 

"Franken-Belly" post 1st surgery
The first surgery I had, they lasered the nerve endings of the cervix, took out 3 cysts and a ton of endometriosis found all over the place (even above my belly button, which is unusually high up as it is).  They did all of this through only 3 little slits in my pelvic area and one little opening they made in my bellybutton (which I could never see or notice).  After seeing what was going on inside of me, they decided I was on the border of Stage III and IV Endometriosis.  For a few weeks after surgery I felt crummy, and my first 3 periods after surgery were unlike any pain I had felt before, but after that, I felt so much better than I ever had before for the next year and a half/two years. 

My normal cramps still sucked, but I used tramadol to get through those, and with the combination of birth control I was on (Loestrin 24 fe), my period was FAR lighter and lasted only 4-6 days as opposed to 7-10 (the cramps pre-surgery lasted at LEAST a week before my period, all during it and a week after and the heaviness was beyond what I could attempt describing, even with other birth control).  After the 2 years, my pain grew strong again, my periods less predictable and light.  My doctor recommended the surgery again.  I agreed.

My second surgery was June 24,  2009.  They went in through the same scars they had made before.  He only found endometriosis this time (no cysts) and lasered all of that out.  I found the same relief I did the first go-around. 

Now is the perfect time to tell my story because for one, my two years are almost up and my endo is back in full force, but secondly--  I never realized until now—just HOW MUCH the surgeries actually HELP until it gets bad again.  I can’t believe that for even one year (much less TWO), my cycle can be manageable with non-narcotic pain meds, only 4 days on average and a problem that hasn’t gotten in the way of my career or “normal life” in that time where things are okay…

It’s still something I’m very aware that I have each month and something I’ll probably always have to deal with and manage with pain meds and birth control at the least, but for now, the surgeries and birth control/pain med combo I’ve found has given me a lot of hope and relief.  I highly suggest making appointments with specialists (not just GYNs) and figuring out the best plan for you.

My AMAZING doc (savior) is in Baltimore, MD.  I moved to Connecticut in August, and since the problem has cropped up again, I have found a specialist (with rave reviews) in my area so I have an appointment with him next week.  I hope to report more good news after that, but until now, keep your chins up.  I know it seems unbearable, but finding the right doctor is key.  I was just lucky enough to finally make my way to a GYN who knew what my symptoms were and sent me to a specialist who knew what my next steps should be. 

Feel free to send me messages if you have any specific questions, etc.  I know everyone’s case is different, and I’m not saying that my semi-solutions  will work for anyone else, but I just wanted to say that I’ve been able to find some sort of peace, and that it’s not impossible.

Take care.


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