Posts Tagged diaphragmatic endometriosis

5 years later… and endometriosis

On and off for the past year and half, I’ve been dealing with significant shoulder pain (right shoulder).  I tried my primary care doctor, I went last fall, because I thought I had a joint problem in my shoulder, especially when the pain started shooting down my arm and up my neck and basic ibuprofen was doing little to dull the pain.  She diagnosed me with a spasm in my upper trap muscle, gave me muscle relaxers and sent me to physical therapy.  My PT was awesome and I completed several weeks with techniques to remedy the pain.  It helped… somewhat, until I started my period again the next month.  Every step along the way, I asked them if there was any logical connection to the fact that the pain intensified with my period.

The doctor and the PT weren’t aware of anything that could be triggering it… maybe hormones triggering stress that was triggering the muscle tightness triggering the pain?  I was given a battery of exercises, stretches, and ideas to help me manage the pain whenever it flared up and ways to ideally prevent it from flaring up.  However, no matter what I have done since the fall of last year, after getting physical therapy, nothing has kept the pain from creeping back in each month.  Exercising, drinking more water, eating healthier, etc has helped a little bit, but never really has resolved the problem.  I always know when my period is coming, as the pain in my shoulder starts a few days before.

I finally decided enough was enough last week when I woke up, first day of my period, and my shoulder pain was far worse than my menstrual cramps.  That’s ridiculous and clearly there is a connection if both are hurting so badly at the same time.  So, I decided it was time for Dr. Google!  And, thankfully, Dr. Google did not let me down this time.  I immediately called my OB/GYN office (seriously, it was pretty much as soon as they opened their phone lines) and had to explain to the person handling scheduling that “Yes, I’m calling for an appointment with my gynecologist about my SHOULDER, yes, just hang with me here, I read something on the internet that suggests it is a form of endometriosis”.  My husband thought I was a little crazy and I’m pretty sure that the scheduler that I was totally bananas, but the pain has gotten disruptive in my life to the point that I’m willing to have people thinking I’m crazy for the sake of getting a solution.

Thankfully, the doctor who delivered both of my babies, and is a bit of a super hero in my world, knew immediately what was wrong with me and what was causing my shoulder pain.  He overheard me talking with the nurse at the nurse’s check in (you know, where they check your weight, blood pressure, etc), and popped his head in to say “I know what it is, it’s behind your shoulder right?  You’re bleeding in there.”  My reaction – “Oh, Thank God, you don’t think I’m nuts.”

I went into the actual exam room and had a chance to sit down and discuss everything.  Turns out, in addition to the shoulder pain being indicative of diaphragmatic endometriosis, the spotting I’ve been experiencing a few days before my period is also a symptom of endometriosis.  Our game plan is to start birth control pills and skip the sugar pills in the packs so I never get my period.  The goal being: to shut down the tissue that is in places where it doesn’t belong that is causing the bleeding/scar tissue/pain/whatever the hell it’s doing in there that is so awful. (Side Note – I’m probably preaching to the choir here, but that pain is absolutely awful.  I think I have a fairly high threshold for pain – I think anyone who’s had a UI can claim that – and when it flares up I’m extremely limited in what I’m able to tolerate comfortably).

My doctor suspects that the endometriosis may be from the surgery to put my uterus back in my body after the inversion.  It’s also likely that I inherited it, as I have a cousin who had a hysterectomy at age 30 to combat it.  Could be both.  I’ve been doing a little more searching online and have come to realize the pelvic bone pain after my first born during my periods is also indicative of endometriosis.  I assumed the pain in my pelvic bone was due to the inversion some how… the down side of not having a great idea of what is “normal” when you have a rare complication like an inversion.  I’m sure I’ll discover other things that I didn’t make a connection to as I look into it further.  The hope being, the pills will keep surgery at bay for me for a significant amount of time.

This would be a significantly more difficult diagnosis if we were still hoping to have more children.  I had my tubes tied during the c-section with my second, so we already knew we were done.  At this point, I’m far more relieved with the knowledge that I know the reason why I’ve been combating this chronic pain and I have a solution to the problem to try for now.


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