WeAreEndo.org - The Social Support Network for People Living with Endometriosis

My endometriosis story

I started getting cramps practically a year before my period even started.  I remember having really uncomfortable cramps in class, grabbing a pad from my backpack, and running to the bathroom.  I would then feel crestfallen to see that my first period had not come.  Most of my friends had begun menstruating, but I had not.  I was a bit of a late bloomer.

I thought that perhaps my cramps would go away once I actually got my period.  Ha!  I spent much of my teen years telling myself that I would simply "outgrow" my endometriosis. 

I also didn't have a clear understanding of the female reproductive system.  I didn't truly understand ovulating, and I didn't understand why I'd have several days in between periods with a different kind of pelvic pain that spanned from a dull ache to a sharp pain.  Most of my peers couldn't even tell when they ovulated -- but why did it hurt me?  I could barely even articulate it.

I remember having terrible ovulation pain in 10th grade.  The school play, which I was in, was later that night.  I had to go to the nurse and I was lying down on one of the beds in the nurse's office, whimpering, and wanting to cry.

My mother had terrible periods, as did her mother, as did her mother.  My mom kept telling me that I'd outgrow it.   I think they all had varying degrees of mild-to-moderate endometriosis.  My mom, at the age of 53, still has her period and still has bad cramps...so I'm not sure why she thought I'd outgrow it!

Finally, at the age of 19, after 7 years of pain, I sought help.  I got a referral to an ob-gyn, and it was one of the worst experiences I've ever had with a doctor.  It wound up being a man.  No respect to male ob-gyns, but I had thought my appointment would be with a female and something got switched at the last minute.  This doctor told me, "Take Motrin and come back in 3 months if it doesn't help."

I burst out crying and said, "I've been dealing with this for seven years!  I'm in a lot of pain!"

The doctor smiled and nodded in a condescending way and told me, "Come back in 3 months."

After that, I didn't seen an ob-gyn for a few years.  I saw one who I really didn't like.  He didn't seem to fully understand how miserable I was and he didn't want to do a laparoscopy to even see if I had endometriosis.  He put me on Yasmin which I hated, and when I told him I couldn't stand it anymore, he said that the only thing to do next was Lupron.  I read the Lupron horror stories and I didn't want to do it.

And so I found a new doctor, who I'm still seeing today.  She's a sweet lady, but I wish I could see someone with more endo know-how.  She did diagnose me with endometriosis after a laparoscopy.  The laparoscopy didn't help the pain and I'm convinced that they didn't even get even a fraction of the endometriosis.  She also put me on Microgestin, continuously, which is helping...but not enough.  I'm looking into switching ob-gyns.  I hate hate hate being on the pill.  I hate its side effects, but I can't seem to go off it.

I honestly feel hopeless about my endometriosis most of the time.  Every few months I have a breakdown because I feel like in some respects, it's ruining my life.  My pelvis is constantly tender.  When I sneeze, I get a sharp pain in my pelvic region.  When I stretch I feel it in my ovaries.  When I touch my pelvis it's tender. 

I'll probably be battling this the rest of my life and that my life will never be like endo-free women.  It saddens me.  My husband is very sweet and supportive, even when it comes to the dyspaurenia...bless him.