Friday, August 17, 2012

It's Always Something...

So today, a week and some change after every woman's favorite appointment of the year, I have been officially diagnosed with what is being coined "Evil Twin Syndrome".

Before I explain that, let's revisit what over a hundred thousand dollars (including insured coverage, of course) worth of fertility tests and failed fertility treatments have taught my doctors, BJ and myself. I have endometriosis.  My body does a pretty good job of keeping the adhesions at a minimum.  Unfortunately, my organs from the belly button down, including uterus, ovaries, intestines and bladder are inflamed.

What Dr. D theorizes:
In an effort to "fight" the endometriosis, my immune system works in over-drive, to try to keep adhesions at bay. This means it kicks the inflammatory response into high gear, but this is at a detriment to my ovaries and their ability to produce strong, viable eggs.  It is possible that my eggs get scrambled during their 72 day maturation cycle as my body dumps histamines and prostaglandins (same things that cause allergies and swelling after injuries) into my lower abdomen.   

It is quite possible that the damage to my ovaries is irreversible.  I will never know with certainty if better medical care in my teens and early 20's would have made a positive impact on my fertility, but it is a possibility.  I was told numerous times that my cramps were just part of the mystery of being a woman by medical professionals.  I am not sure why it took nearly 13 years for someone to suggest that I might have endo.  Abnormally painful periods are THE symptom.  I, as a young teen, apparently was not able to convey the fact that I was in real pain.  But here are the "typical" symptoms and what my response was back then:

1. Painful mestruation- YES!  I knew and used the term dysmenorrhea (painful periods) when I was 16...HELLO what 16 y/o says that?
2.  Heavy/Irregular Periods- Heavy no, Irregular HIGHLY!  3 weeks 12 period don't care.
3.  Pain when voiding- Yes...I still go on crash diets and drink as little as possible every time I'm on my period so I don't have to to go the bathroom.
4. Painful Intercourse- One has to have sex, and I wasn't when I was younger. However, it wasn't until after my surgery that I even knew sex was painful for me, because for a brief period of time afterwards, and for the first time in my life, it wasn't...*SIGH* 
5.  Infertility- Well, back in my day, when I had to walk up hill to school both ways in the snow, MTV didn't offer us reality shows, so most of us did nothing to test our fertility...

But here is a list of symptoms that I did have that no pamphlet I was ever given, or medical "professional" asked me about.
I.        Waking up in the middle of the night biting pillow to keep from screaming.
II.       Diarrhea and dry heaves/vomiting from pain and too many prostaglandins.  
III.      Contemplating as I am leaning over the toilet heaving about how hard I'd have to hit my head on it to knock myself out.
IV.     Heating pads feel better than nothing, but mostly seem to have a placebo affect...which hell, you'll take it.
V.       Regularly blistering myself with heating pads, and it's still not hot enough.
VI.      The thought of lying still and trying to sleep is worse than pouring alcohol over fresh road rash. Seriously I would trade...
VII.     Sobbing into your pillow at the age of 16 about how you don't understand how you're expected to live like this month-to-month for another 20+ years.
VIII.    Being in high school and counting down the days until you can have a hysterectomy. 
IX.      Knowing for fact, that your period hurts way worse than ACL reconstruction...Just in case you're not tear your other ACL and scientifically conclude that you were correct.
X.       Setting an alarm for the middle of the night (every 4 hours) so you can take ibuprofen
XI.      Taking 6,000-7,200 mg of ibuprofen in 24 hours is really bad for you, but you don't give a shit if it gets you to a tolerable level where you can exist and perhaps even function in the world.
XII.      Pacing back and forth for 2+hours in the middle of the night while clutching heating pad to abdomen.
XIII.     Contemplating "falling on knife" because stabbing yourself in your uterus sounds like it might offer you relief.

Over time, you do get better at managing pain.  I can stay in bed with worse cramps longer than I could when I was 16...part of that is simply knowing that I've survived all my periods thus far, so I figure I'm probably and/or unfortunately (depending on my mental stamina that particular month) not going to die of my period.  I truly was scared of my period when I was younger, because the level of pain I experienced did not make sense to me or seem to compare to any of my peers. I was ashamed of myself.  I truly thought I was the wussiest little girl in the world.  My friends could take Pamprin and move on with their lives. I felt like my uterus was tying itself in a knot and taking everything else in it's sight with it.

It still blows my mind that some people don't like to use birth control that causes them to skip periods because they get uneasy about being pregnant.  While the intellectual part of me kind of gets that, every other part of me is astounded.  I truly hate my period. If I didn't think there was a miniscule, outside chance that I might be able to carry a baby one day, I'd have begged for a hysterectomy years ago.  I look forward to early, artificially-induced menopause as it is.  

However, as it turns out...the miracle of a hysterectomy may not be my savior after all.  I have officially started treatment for a bladder condition called interstitial cystitis (IC), or painful bladder syndrome.  The protective mucous layer on the inside of my bladder (similar to the one we have in our stomachs to keep our stomach acid from burning a hole through it) is either shotty or non-existent.  So my bladder hates urine because the pH is too high or too low and causes inflammation.  It hurts my bladder when there is urine in it. Ergo, I have an urge to go to the bathroom as soon as I have a minuscule amount of urine in it.  I pee ALL the time...have since I was a small child.  It's just always been part of the mystery that is MK, but apparently going to the bathroom 15-20+ times a day/night when you are not 9 months pregnant is a little abnormal. Who knew? Also, apparently my mom should have been able to fill out the "First time baby slept through the night," part of my baby book some time before my 30th birthday (it's still blank). Again, who knew?  When Dr. B brought this up a year and a half ago, I was like, 'what's your point?'  I have to go a lot, I get up and go...What's the big deal?

Dr. B theorizes it is a big deal because it could be contributing to the overall hostility that is my womb.  Ok, so now I'm a little more interested... IC could be egging on my endometriosis, which in turn eggs on the IC...and therefore creating the pent-ultimate hostile environment for my ovaries and frying my eggs. Hence why having both is sometimes referred to as Evil Twin Syndrome.  The symptoms of IC are almost identical to endo.  Chronic pain in pelvis, worsening during mestruation, pain with sex, yadda, yadda...

The cure? Of course, like endo, there isn't one.  They don't even really know what causes it.  There are some treatments...Elmiron, pill which helps build up the mucous layer, and anti-histamine because histamines and prostaglandins are the devil-incarnate (this is not medical fact, yet, but it may be my doctoral dissertation topic one day)...And of course, dietary changes.  Obviously alcohol and caffeine are out along with carbonated beverages...  My Keurig that I love will now be collecting dust :(. No citrus fruits, which are positively my favorite food group. :(  Soy (again...AHHHHH! This is soo hard!!! It's in EVERYTHING!) No yogurt, deli meats, pistachios, ketchup, spricy/brown mustard, vinegar, spicy foods or artificial sweeteners and preservatives, foods with lots of potassium...
(Getty Images) goal in life is to give my pelvic organs a good 18 months of vacation so they can heal.  I truly would like for that to happen, and then not being in pain all the time would be icing on the cake.

Peace, Love and Better living through chemistry,



  1. I had to beg the dr for my first surgery at 20. Once I got through that I didn't have any problems with drs, because if they didn't take me serously I got a knew one. But from 15 to 20 they all told me it was normal. If I hadn't told them it was enough I think my story would have been a lot different. More suffering for no reason...all because they think pain is normal.

  2. Hey! I'm so happy to find your blog! I'm also at the Chattanooga Fertility Clinic. I like your style. :) I followed your blog and I hope you follow me back! Infertility sucks!!