Here's my story, although I'm sure it's not that different than many of you out there...
I started my period at 12 with pain, cramps, irregularity, heavy flow and clots. I have also been overweight my whole life. Years of complaining to quack doctors about my painful periods led to being put on BC and told to lose weight. No one would ever listen to me and actually test me to see if there were anything wrong.
When I was 29 in 2001, I decided to undergo Gastric Bypass, having reached 389lbs. By this point, my periods were erratic, extremely painful, heavy- nothing had changed since day 1. It feels like I'm being stabbed repeatedly with a hot spear or a rusty knife that's being twisted around and around... I get nauseous, sweaty, and no matter what I take, nothing helps. At times, I can't do anything more than curl up in the fetal position on the floor and rock. The morning of my surgery, my surgeon (who used to be an exploratory cancer surgeon) and I discussed my bypass, and I brought up my periods, and how I could never get anyone to take my pain seriously. She agreed to "reach around down there" (TMI! LOL!) and see if there was anything while she had me open. When I woke up in ICU, she told me that they had to call in an OB/GYN because they found endometriosis the size of a grapefruit wrapped around my left ovary. They had to remove the ovary, and I lost so much blood that I had to have a transfusion. I felt vindicated that I finally had proven that there really was something wrong, but robbed of my ovary and all the years of fighting with doctors over my periods. It wasn't in my head!!
In the next 2 years, I managed to get down to 185lbs, but still had pain and heavy periods. "Can't blame my weight anymore" was my motto! I went in for an internal ultrasound where they found 3 small fibroids. Great. My doctor said that we'd watch them, but they weren't a big deal. I was also diagnosed as anemic- well duh- let's see you lose as much blood as I do every month and we'll see if you're anemic too! But no reason as to why my periods were so messed up. Must be the endo- let's put you back on BC. Wonderful.
About this time, other changes were going on in my life. I got married and laid off from my job all in the same month. My husband also got laid off from his job shortly before we got married. We lost our insurance, and didn't have it for 4 years. I went back to school to get my BA. This whole time, I was worried about what was going on inside. I would go to the health clinic on campus for help, but they were used to dealing with STD's and how to put a condom on- not complicated cases like mine. My doctor there did her best, putting me on BC and iron pills (which I reacted to poorly and stopped taking)- yet again. Just as well, because at that point, we couldn't afford to be pregnant anyway. Plus, sex was painful. My poor husband felt like it was his fault. At times, we would go for weeks without because it hurt me too much.
In 2008, our situation improved. My husband got a job with medical insurance and we wanted to start our family, so I quickly made my appointments. An internal ultrasound showed that my fibroids had grown 10 times their size. But something new was added to my diagnosis- Ovarian Cysts. Three in my poor little ovary. My OB decided to put me back on BC to "see if they'll resolve themselves", otherwise, he'd try to do surgery, since we wanted to get pregnant. Otherwise, he'd recommend a hysterectomy. Luckily, the cysts went away, I burned my BC, and we started trying to get pregnant in Oct 2008 (I was 36).
The past 2 years have brought more of the same- my periods are still very painful, heavy, clot-filled messes. My GP treats me like a drug fiend for asking for vicodin to help with the pain (since I could take entire bottles of Tylenol, Advil, Allieve and Motrin and still have no relief!) I have also gained some weight back- I'm up to 260 (so, not where I was, but still down 130lbs from my heaviest.) But worse yet, I haven't gotten pregnant, and sex still hurts. But I grit my teeth and bear it, since I know that if we don't, we won't get pregnant! lol! My periods have begun to get even more "weird" (if that's even possible)- I have them regularly, about every 30 days. But I tend to spot for 3-5 days before, go super-heavy for 5-6, then spot for 5 more. I also have pain mid-month, usually with a discharge (I assume that's when I'm ovulating, so hubby and I "step it up" during this time! Painful, but... ) My OB sent me for another ultrasound- "no changes internally- it's probably your weight" (grrrrrrr!!!!!) and sent us to a fertility doctor.
I have to say that this past Friday was probably one of the worst days of my life. Day 3 of my period, bleeding like crazy, writhing in pain, we went to see the specialist, who did his own ultrasound right there in the office. After 2 hours of talking with him and reviewing the results, he informed us that I most likely have adenomyosis, not fibroids. The only way to tell for sure was to do a biopsy on my removed uterus- yes, a hysterectomy. The only way to stop the pain and heavy bleeding is to have a hysterectomy. Chances of getting pregnant according to him? Slim to none, since it's been 2 years of trying and I'm now 38... Try IVF? Spend around $20,000 (our insurance doesn't cover it), but there's no guarantee. Oh yeah, we can always adopt.
I'm sorry, but this is not what I want to hear. I have always wanted to be a mom, and have longed for the day when I can put my son or daughter into my husband's arms for the first time... Don't get me wrong, I am open to adoption and all that goes along with it. But is it selfish of me to want to have my own baby? My mantra every month that I go through this hell has been "I'm doing it for the babies". It's the only thing that has gotten me through. And now they tell me to "give up" and have it all ripped out because I'll never get pregnant? I can't believe it.
My husband (who's been very supportive) says that we shouldn't give up, and I agree, but it's hard not to want to do my own hysterectomy when I'm squirming around in pain. Even while I type this, I am doubled over in pain. I've taken 2 vicoden in the past 4 hours, and it hasn't helped. My girlfriends don't understand- they suggest a warm shower or a heating pad. They say- well, there's adoption. Yeah, there is that, but........
So where do I turn? The internet hasn't been too helpful- sites say my only relief is a hysterectomy. Most people my age have already had their kids, so having a hysterectomy isn't such a big deal. But what about me? Is there anyone out there that is/has experienced what I'm going through? What do I do? Where do I go? Do I throw in the towel and forget about ever giving birth? Or do I fight my way through this pain every month in the hopes that by some miracle I get pregnant or win the lottery so I can afford IVF?
I just feel at a loss with nowhere to turn. Maybe there's someone out there that can help.
Lost in the pain and heartache- Kerri