So March is Endometriosis Awareness Month ~ its good to see more information popping up online and more people sharing their stories. I had a high school friend message me the other day asking about Endometriosis because she was concerned her daughter might have it and the doctors seemed to ignore her concern that it might be endometriosis because she was so young, she actually remembered when I would miss school or cancel sleepovers because of my "cramps".....I know this frustration all to well and was excited to share the information because I know there are so many young girls out there that could be going through what I went through. I pray that this young girl does not have it but if she does I hope that she can get some answers a lot sooner than I did. I often think about the first time I asked my doctor about Endometriosis, this long crazy word that I had seen in a pamphlet in the doctors office.....her response was "you are too young for that". I wonder had I listened to my gut and fought for answers if things would be better today. So I decided to put together the below personal explanation using my own words (because the medical stuff gets confusing) as someone that has suffered from it since 10 years old.
What it is?
When describing Endometriosis I use "a spiderweb of barbed wire" quite frequently. Think of a spider web in your abdomen wrapped around your organs....sometimes your organs get stuck and can move around properly as you do different activities...sometimes simply standing up straight causes pain and discomfort....cardio and exercising is hard, which sucks when your husband is a great personal trainer and you feel like you are letting him down when you aren't able to give 100% because of the discomfort. It was after a few months of doing cardio with a friend/coworker that she noticed I was constantly holding my stomach and complaining about the pain that she made me an appointment to see a doctor. In 2008 it had almost divided my bladder in half, so when my bladder would fill I would get this golf ball size lump on my stomach until I went to the bathroom. I find myself often blaming my grimaces and pain on other things "I just have a headache", but most of the time I just do not talk about it and act like "Im fine". Sometimes I feel like Im always complaining about something not "feeling good", and then I think "if they only knew how I was really feeling today"....... The pain is not just during "that time of the month" it is everyday! In addition to the abdominal pain, there are many more symptoms....painful bowels & urination, painful sex, fatigue, infertility, anxiety, depression. Some days I may experience just one or two of the above, then there are days I experience them all at the same time.....
Diagnosing it...
I wasn't diagnosed until age 27....after 17 years of knowing something wasn't right..these weren't"normal cramps", or "dysemmenoria" as the doctor labeled it. The doctors should have taken a hint when at age 10 I thought my ruptured appendix was just "normal cramps" as the doctor had put it so many times. In 2008 I had laproscopic surgery because the endometriosis had caused 2 grapefruit sized cysts, and several small ones that caused me to lose one ovary. It was then the endometriosis was confirmed and I could finally tell the world I wasn't crazy and infact I had built up a very high pain tolerance. You can not see "spider web of tissue" on ultrasounds or xrays so the only way to know 100% sure that you have it is for them to open you up and take a look. Most doctors will not perform an exploratory surgery just to see if you have it and honestly I wouldn't recommend having it unless you had reason to believe it is obstructing an organ or causing additional internal issues. If you suspect you or someone you know has it, I recommend you find a good doctor. You may have to see several before you find one that you feel comfortable with and know that they have your best interest in mind in regard to your reproductive health. If your doctor suspects endometriosis there are things that can be done without surgery to help preserve your future reproductive health. They may not necessarily stop your current pain, but can prevent it from getting worse and causing more issues.
What Causes it?
No one knows what causes it....genetics? dna mutations? ....we do not have a clue....and not enough research is being done on it so that one day we will know. Since so many that suffer with it suffer in silence not a lot of people know a lot about it and what those of us that have it go through. For some reason my body just decides to release the tissue into my abdomen instead of letting it flow out of my body during my monthly cycle.
What is the Cure?
There is no cure....and the few treatments available are only temporary IF they work at all. I've had laproscopic surgery to get "cleaned out"...only lasted 3 months. Tried many medications and the only thing that helps keep the pain level down is constant progesterone birth control (I skip the placebo pills so I don't have a monthly cycle). There are intense hormone therapies that essentially put your body into menopause (and yes the hot flashes suck!!), or I can have a full hysterectomy.......but neither are viable options when you hope to one day have kids, and both have their own side effects that can be just as debilitating as the endo pain. So you just have to choose the lesser evil in hopes of one day they find a cure.
Dependency on Pain Killers....
Sometimes you feel like a drug addict. I have a prescription for pain pills just for my endo pain....I keep them close by and will notice immediately if just one is gone. I once had some stolen from me and went into a full panic attack because I was afraid of the pain starting and not having anything to help. I've been known to race to my doctors office on a Friday right as they closed when I realized I didn't have a refill and jumped around like an idiot outside so I could get their attention to get a refill called in. Fortunately my current doctor understands, unlike those when I was younger who thought I was a teenager just trying to get pills to get high on....
Infertility....
Im sure everyone has noticed by now we do not have kids. I would love to have a good explanation for this but once again, there is not enough research to figure out how endometriosis has effected my ability to conceive. All we know is there is a bunch of spider webs that interfere with my normal bodily functions and hormone levels so there are many possible reasons and ways it can effect my fertility....not to mention removing the tissue surgically only caused more scar tissue so I have that in the way as well.
That's my brief summary/explanation of Endometriosis. Hopefully one day this disease will be taken more seriously and we get more funding and research to one day find a cure and better treatments. If you or someone you know is experience symptoms like this I BEG you to find a good doctor immediately. I would never wish the pain alone on anyone, and I can not stand the though of one of my friends and loved ones going through the roller coaster of infertility.
That's my brief summary/explanation of Endometriosis. Hopefully one day this disease will be taken more seriously and we get more funding and research to one day find a cure and better treatments. If you or someone you know is experience symptoms like this I BEG you to find a good doctor immediately. I would never wish the pain alone on anyone, and I can not stand the though of one of my friends and loved ones going through the roller coaster of infertility.
