Tuesday, March 25, 2008

endometriosis: life ruiner

it started a while ago... about 2 years after my son was born, i just noticed that i didn't feel 'right'.

i started to notice that things that are normally associated with menstrual cycles were occurring ALL MONTH LONG. pelvic pain, fatigue, headaches, bloating, general grumpiness, sore breasts... etc. i noticed that my periods felt extreme, i would say every month "this is the worst period i've ever had!" the bleeding was extreme, the exhaustion was like something out of the first trimester of pregnancy, and the migraines that lasted for a week, they were the worst part.

later that year, i found a lump in my breast. it was nothing and all i have now to show for it is a scar where the biopsy needle went in. my regular doctor recommended i not remove the lump, saying that since its only crime was pain and the potential to grow, i didn't have 'enough breast tissue anyway' and taking it out will remove half of what i do have. also, off the birth control pill in an effort to help out with the pain.

about a year ago i told my doctor i felt like my hormones were out of control again. she suggested i go back on the birth control pill to try and even those feelings out.

well, 6 months after that i woke up in the middle of the night with a sharp pain in my lower belly. i leaned on my bathroom counter in pain for about 15 minutes and started to shiver (like when you're having a baby without pain meds). i decided it was time to wake up my husband and when he didn't know what to do either, i called my mother at 3 in the morning. she said that i had better get to the ER, so i suited up my little family and went. the newbie doctor suggested it could be constipation... a half hour later the older doctor came in and said, 'it's an ovarian cyst rupturing, would you like anything for the pain?' i declined and went home.

a month later, it happened again, but this time it was during sex. i should mention that sex nearly ALWAYS hurts (my whole life, in fact). anyway, another cyst ruptured and when i went to the ER that time, the nurse suggested that i might just be there for pain medication and really i should just go home. angry and hurt, i did just that.

when i talked to my doctor, she seemed angry that neither time did a doctor do an ultrasound to accurately assess the situation. she sent me for one later that month, but it was just after my period, and anything that was there was gone. nothing to be seen.

she said it's endometriosis and told me to keep taking the pill. she also gave me a prescription for pain pills. i love my doctor, but she didn't suggest to me how i should deal with endometriosis, how i should deal with the hormonal issues or the pain. she didn't tell me what i should expect when i tried to conceive again. she just... sent me home.

well, i'm trying my hardest to deal with this stupid-ass condition, but i'm failing miserably. every month is a crap shoot. will i be in pain, will i have migraines, will i be exhausted and moody the entire month, or will it just ruin things for one precious menstrual week?

i don't know anyone with endometriosis so i turned to books. the diets they suggest rule out dairy, meat, soy products and grains. hmmm, i'll eat... vegetables only, thanks.

others suggest the key is effective use of pain medication. i'm supposed to take these pills when i 'expect' to have pain and take them until i 'expect' the pain will end. ohhhhkay. i HATE TAKING PILLS. medications are high on my list of things to avoid.

stress minimization, another key to effective living. well, don't get me started on that one... it's not even an option, especially when i miss at least 3 days a month of work because i am in pain, exhausted and experiencing the worst migraines i can imagine.

i don't think that people understand what it's like. i feel really judged and misunderstood. i want it to go away, and i want my life back to normal.



alicia said...

doctors don't know anything. maybe they did once when they learned things from books like you say say, but the day they finished med school and saw their student loan repayment schedule - it stopped being about helping people.

i went to the doctor complaining of abdominal pain and nausea (i was also yellow with jaundice) and the doctor told me to go back to work and take a gravol. the next day i was in the emergency room with a an exploding gal bladder and pancreatitus. thanks for NOTHING asshole.

maybe you can cure things with yoga and vegetables, but dr. leash prescribes 10 ccs of cookie dough ice cream and something with vodka in it.

movie reeeeeel!

Giga said...

Two words
Second opinion

RandomNotions said...

ugh i hate it when they just tell you to go home. I have a mystery spinal problem as yet to be identified and when my various tests come back inconclusive they just tell me that they don't know what is going on and don't even offer me a follow up opinion....Argh!

I am so sorry to hear of your affliction though, chronic pain, stress and illness is very detrimental over time to both your physical, mental and emotional well being. My only advice is to stand your ground with the doctors and don't let them brush you off.

My thoughts are with you

Anonymous said...


punchanella said...

so don't read it. genius.

Manders said...

Sorry you are in pain. My cousin had Endo and took the pills all the time until she went off for her second baby. She went right back on after and stayed on until she had a hystorectomy (wrong spelling, sorry).

I personally had the cysts. It was explained to me that they are part of ovluation. I think it's bull. When you cycle a normal cyst grows on the ovary and bursts to release the egg. My cysts grew ot be about the size of a half dollar around. Every other month. Only one of my ovaries does it.

I was told to take said OTC pain killer for a week to tend to the pain or get on birth control to stop ovulating. None works.

I can't stop it but if it is cysts cutting down on caffine (I couldn't drop it all) will help.

I understand the cyst pain, and nothing will stop mine. Not even Vicodine.