Life with Endometriosis

a Real patient shares her experiences and journey for help with endometriosis – and how pelvic Physical Therapy can help

Below is a direct, unedited writing by one of our real patients. She gives an honest description of her experience, feelings, and what helped (and what didn’t). She shares it with you to validate that you aren’t alone, but also so others understand how to better support someone in your life who may be suffering.

“WHAT I WISH I KNEW IN 1999”

Early

“Things were never quite right. I welcomed my first period with a pit of doom deep in my stomach at age 12. Somehow I had heard through the 6th grade grape vine that periods came four times in a lifetime, but you never had any warning as to when they would make an appearance. I was relieved when I found out they showed up reliably, but shaken to my core when I learned that they happened once a month. I tried to barter with a higher power: let me have it just four times and I’ll take it whenever you feel like dishing it out. It didn’t work. In fact, the only kudos I can give my period is that it was very, very reliable and all too predictably abysmal.

Teenage years

I spent the next seven years of middle and high school wearing hoodies tied around my waist because my school’s hall pass quota didn’t allow enough bathroom breaks for proper menstrual management. I was terrified of bleeding through my clothes. My fear came to fruition in seventh grade geography, and to this day I can not look at a world map without feeling some mix of shame, resentment, and the urge to write my alma matter an angry letter about their hall pass system. It wasn’t easy.

Adulthood

The difficulty of period management continued well into my adulthood. I was a server at a busy restaurant that only had one bathroom, little to no time for breaks, and, get this, required khaki pants. I traveled abroad to a country that was rumored to not sell tampons. Everyone else packed a 4 month supply for themselves, I packed enough for an army. The rumor turned out to be false, there were tampons, however none were sold with applicators and I couldn’t read what size I was buying (how do you translate “super extra jumbo heavy” in Hungarian?)

What finally pushed me into a doctor’s office was a camping trip to a farming conference at 31 years old. It was a rather crunchy event- composting toilets only- and I bled heavily for ten days straight. That was the moment I was done. I could no longer enjoy life to its fullest with this monthly burden looming over me.

Seeking help

What followed was months of dead end and often harmful doctors appointments. I won’t run through the details of these- if you’re at the point of seeking pelvic floor physical therapy you likely have similar stories of your own. Suffice it to say I was given quick fixes, told it was normal, shot in the uterus with an IUD and sent on my way. But it wasn’t normal, it was endometriosis, adenomysis, and pelvic floor dysfunction resulting from twenty years of chronic pain.

Coming to Well Being was the first time that a doctor sat down, took a look at my whole life, and helped me make a genuine plan for getting better. It was the first time I learned what I wish I knew in 1999.

What I wish I knew from the beginning

I wish I knew that the level of pain and bleeding I was experiencing was not normal. I wish I knew what foods and activities could be modified to reduce these symptoms. I wish I knew about the whole array of treatments that were available- from hormone testing to proper surgery. And I wish I had a good pelvic floor physical therapist.

I can’t go back in time and teach myself these things, and I’m not looking to place blame on any individuals (the system as a whole though- that’s another thing entirely). What I can do is help open up this topic of conversation with the hopes that maybe the path for today’s twelve year olds will be easier than mine. 

What you can do

If you are the parent or guardian for a young person approaching or beginning menstruation, consider asking them which sanitary products they prefer (I was too embarrassed to tell my mom, so I stole the overnight with wings from my neighbor’s house- sorry Mrs. T!). If they really don’t want to talk about it, give them a book about it. I think it’s worth the risk of embarrassing them in the pursuit of distributing empowering information. Consider contacting their school and asking what the bathroom break policy is. Advocate for free sanitary products in schools. Educate yourself on these issues too, so that you can be prepared to help if things seem out of whack. The information and help exists- so let’s get it out there!”

Resources for people with Endometriosis

Endo team:

It is VERY important that the people on your “endo team” are SPECIALISTS. Please do your research to find an Endometriosis specialist (not just a regular OBGYN, unless there are limitations to you seeing a specialist). Same for your pelvic Physical Therapist. See a SPECIALIST. A standard PT, or even someone who says they do “Women’s Health” may not have a full understanding of the complexity of this condition. Your PT is also very important to help guide to you other members of the team if you haven’t already built one. They can direct you toward who can help with mental health, diet, hormone testing and management, surgeons, or others. Of course, they also offer treatments. See our related post on PT treatments for endo. Scroll down to the Fact Friday post “No Two Treatment Plans for Endometriosis are the Same”.