I’m frustrated and exasperated to tears, but I can’t work up the vitriol for the pit about this. I am also not seeking medical advice, simply purging some negative emotions.
My reproductive system doesn’t work right. It never has. I’m only 27 years old, but the problems started when I was between 13 and 15.
For years, I had excruciating pain with and in-between my periods. I’m talking so much pain that I got chills and I vomited. I would lie in my bed crying in the fetal position, rolling around incoherently babbling because it hurt too much to lie still or sleep.
I was told, repeatedly, that nothing was wrong with me, because Ibuprofen didn’t fix the problem. They put me on birth control, which lessened the pain enough for me to at least try to carry out my normal day-to-day life. Still, I kept getting told I was making it up.
Eventually, birth control pills did nothing, and I stopped taking them. The pain worsened over the years. Finally, in 2004 and 2005, I moved to a new place. I got a specialist OBGYN, who decided she couldn’t do anything for me. She referred me to an endocrinologist.
The endocrinologist was an asshole. He made it clear that he thought I was flat-out making everything up, despite having been in pain since 1996. I had tried everything they had thrown at me. Now, he was here to throw some new drugs at me.
I was on Lupron for 6 months, and it made me violently ill. I could set my watch by the hot flashes. My teeth started to hurt, and my joints started to ache. I gained weight.
Nothing helped, even a little.
At this point, I was begging him to do something. I had already begged for a hysterectomy, but since I didn’t have any children, they refused. I was too young, but if I had children already, they would have considered it. Nevermind that I’m bisexual with a female preference and do not want children.
My reproductive system was ruining my life. I couldn’t do anything, I was always in pain. I was missing work, and even when I forced myself to go, I was less than productive. Between the pain itself and all the medication side effects, I was barely functional as a human being.
I told them I suspected endometriosis. I had all the symptoms of it. Apparently, a patient suggesting something makes doctors twitchy. There was still the insistence – “Nothing is wrong with you.” I spent nights in the ER screaming in pain and sobbing, only to be directed home without any kind of pain relief… I was told to take ibuprofen. Every time, they just upped my dose of Ibuprofen.
Finally, I pushed them to the point of annoying them so much with my complaints that the endocrinologist said he would do a laparoscopy. I had been begging for about a year at this point, trying every drug they gave me.
He told me outright that I did not have endometriosis, because if I did, I would have responded to some of the medication he had tried, but that he would do it anyway to basically shut me up.
The day I went into surgery, he reiterated that at least they would prove I didn’t have endo.
A few hours later, I woke up to my mother telling me that the doctor told her I had endometriosis, and that they had removed some of it, but that the rest was inoperable. I also recall some vague info about cysts, but I was so groggy I don’t really remember much.
The results of the lap were positive for a while. About six months later, I started getting pain again, though not as severe. They tried more medications. I gained about 40lbs in a month, my blood pressure shot up dangerously high, and I started retaining fluid in my legs to the point where I had a hard time walking. I had to buy new shoes that were three sizes bigger, just to accomodate all the fluid. My doctors told me to wear compression stockings, but all those did was move the fluid around, not get rid of it.
I would up in the ER again and again because I COULD NOT WALK. The circulation in my legs and feet was terrible. I had fluid leaking out of my pores. The doctors just rubbed their chins and told me to keep my legs elevated and wear compression stockings. I nearly got fired from my job due to inability to keep up and walk fast enough.
About a year after my first lap, I had a second one to remove even more endometriosis. This time the doctor said they removed all the residual stuff, and that if I ever complained about pain again I should go see a psychiatrist. They told my mother this.
After the second lap, things improved a great deal. I have never been pain-free, but it alleviated a good chunk of it.
Until 2008.
Between the two laps and my treatment for sleep apnea, the edema in my legs is all but nonexistent and my blood pressure has returned to normal. I am trying like hell to take the weight I gained off, but it seems impossibly stubborn. Despite the improvements, in 2008 I began experiencing pain again. Slightly different pain, in addition to the usual pain.
I moved again, and began seeing yet another new local doctor. After a couple of very intensive appointments with her, she has determined something new.
In addition to endometriosis, I suffer from polycystic ovary syndrome.
Over the last six months, I have been in exponentially greater and greater pain. I feel about ready to beg for a hysterectomy again, but I read my insurance company’s guidelines for approval of a hysterectomy and my reasons aren’t good enough.
They also refuse to believe that endometriosis and PCOS are causing my pain. We’re back to the ‘you’re making it all up!’ garbage, again.
I’m tired of it. I’m tired of fighting with doctors. I’m tired of being in pain and trying to get people to believe me. Whenever I complain, doctors cite the fact that I’ve had two laps to remove endo damage and ignore the fact that ENDOMETRIAL TISSUE CAN GROW BACK AFTER REMOVAL. That’s part of what makes it so insidious. They also cite the fact that apparently, PCOS isn’t supposed to cause pain.
Funny, if I go look up PCOS support groups, one of the big issues facing women is the fact that they have excruciating pain and their doctors say they don’t.
The only thing my current doctor can suggest that I do is… go back to the endocrinologist. The guy who treated me like dirt and told me I nad nothing wrong with me, right up to my surgery date.
I’m miserable, and it’s affecting my entire life. I’ve also been diagnosed with massive infertility issues because of all these problems, but they’re still refusing a hysterectomy.
Because I don’t have children yet.
I don’t ovulate properly, my periods are all over the place and irregular, I bleed like crazy and have ruined clothes and bedsheets by the truckload. For the last 12 years I have battled constant, unbearable, life-altering pain.
12 years.
Most of the women in my family got hysterectomies after hemorrhaging during childbirth which nearly killed them. Ovarian and cervical cancer and breast cancer is rampant. I’ve never been keen on pushing out a ton of kids, anyway.
Apparently, though, this is not my choice to make. Until I squeeze out a few kids, I am defective. I am less than.
My own health and well-being are worth less than an imaginary child I will probably never have, that everyone else is trying to force on me. I am just the dirt for some miracle baby to grow in. My pain doesn’t matter, because everyone else has decided that I NEED to be able to have a baby, whether I actually want one or not.
I don’t even have the money for all the expensive fertility treatments I’d need, if I DID want a baby. But the most important thing is that I leave my uterus in there. That’s all anybody seems to care about. Maybe someday I will live up to my obligation to produce another human being.
I did finally find a doctor to prescribe me some mild pain meds, but a bit better than ibuprofen. They help me function enough to keep my job. This month, though, the pain is the worst it’s been in a long time. I just don’t have the energy to start this circus all over again, and not get a different result.
I just feel like giving up and saying, “Okay, you win. I’ll just shut up and suffer, and keep it to myself.”
I give up. Really. It’s too mentally and emotionally and physically exhausting to keep fighting over this, and I always feel like I’m running through a crowd where everyone is pointing at me and sneering, “Liar!” when I say I’m in pain.
One of the biggest insults is being told practically flat-out to my face that I’m faking it to get pain meds.
I know there are other people out there who suffer with these things, but I find it so difficult to make connections with other people about this kind of thing. I’ve honestly given up hope of anything ever changing.
The most depressing part? How much money it all cost me. They milked me as much as they could. Every drug they could prescribe, even ones my insurance didn’t cover. The endocrinologist really had his way with me, financially. The Lupron shots were 100$ a month, and they charged me a 30$ specialist visit co-pay just to go to the office, wait in the waiting room for an hour, sign a consent form for surgery, and leave. They could have mailed me the form.
I’m not really sure how to end this, and I could go on forever if I don’t quit soon, so I’ll just stop, here. Thanks for letting me unload.
