Sunday, March 2, 2014

March is Endometriosis Awareness Month--What Does Endometriosis Feel Like?

I think one of the biggest impediments and delays in endometriosis diagnosis is that we teach our girls to expect pain during menstruation, and they do not know how to distinguish "normal" menstrual cramping from pain symptomatic of disease pathology.  Another impediment is that we are illiterate when it comes to speaking and understanding pain language.  We do not have an objective instrument to measure the kind and degree of pain we experience.  There is the pain scale found in nearly every doctor's office.  The faces representing 0-6 range from looking happy to mildly constipated. 

As an endometriosis patient and someone with a genetic spine malformation, for pain that looks like it would measure 0-6, I would not go to a doctor's office.  I would manage it on my own and hope that tomorrow is better.  For many endometriosis sufferers who have acute episodes of pain and present to doctors' offices or the ER, which is often a humiliating experience, it becomes a delicate negotiation between trying to explain your pain and trying not to look like a "drug seeker."  Unless you have a gunshot wound, a rusty nail sticking out of your eye, or pieces of a dashboard impaled in your chest, reporting a 10 will get you labeled a "drug seeker."  The choices left are 7, 8, and 9.  

Perhaps a better scale comes from one of my favorite blogs, Allie Brosh's Hyperbole and a Half.

In addition to difficulty in describing intensity, there is the difficulty of describing the quality of pain.  Some descriptors that physicians use include: aching, burning, cramping, crawling, crushing, heaviness, icy coldness, intermittent, numbing, piercing, pounding, pressure, sharp, shooting, sore, stabbing, tearing, tenderness, throbbing, tightness, and tingling.

If I had to describe my worst endometriosis pain, prior to having spine surgery, I would have described it as a 10.  Spine surgery is my new 10, and my worst episode of endometriosis pain is a 9.  I would describe it variously as aching, burning, sharp, shooting, and especially stabbing. When I described it to my endometriosis excision specialist, I said it felt like what I imagine it would feel like if a little monster was inside my abdomen and pelvis stabbing me repeatedly.  I've never really been stabbed before, other than perhaps with a pencil in elementary school, so it is hard to say.  It was definitely qualitatively different from the intestinal cramping experienced during a bout of diarrhea.  

Along my journey to an endometriosis diagnosis and treatment, I was referred to a GI doctor as my diagnosing ob/gyn did not believe me when I said I felt worse after he fulgurated (burning the surface of endometriosis lesions) the endometriosis in what was supposed to be a diagnostic laparoscopy.  This ob/gyn said that I probably had IBS too. Fortunately, the GI doctor he referred me to was a kind, wise country doctor who said that IBS was largely a catchall diagnosis when doctors have no other explanation for abdominal/pelvic pain.  He asked me to point to where it hurt, and I did.  I pointed to the left side of my pelvis, one space just above my hip, all the way up under my ribs, and radiating to the flank.  He asked me if the pain was always in the same place.  I said yes, and he said that it is not IBS then.  It is endometriosis.  I have to thank that country GI doc.  He saved me from returning to an ineffective ob/gyn and sent me along my way to finding definitive care at the Center for Endometriosis Care in Atlanta.

I have "met" women in various on-line support groups who have described endometriosis pain as worse than labor.  I recently saw a story on a local TV news station of a woman who unwittingly gave birth "naturally" in her own home, with her husband and a late-arriving paramedic assisting her.  She did not go to the hospital when labor pains started because she did not know she was in labor.  She expected labor to be more painful than her battle with endometriosis.  

What does your endometriosis pain feel like?  Please comment and share!  The more we can do to empower others to recognize when their menstrual pain is not normal, the better their health outcome!


  1. I just had spinal surgery too. I had six discs (essentially half of my spine) replaced. They literally had to cut my abdomen open to do this. I WALKED out of the hospital, three days later on NO pain medication whatsoever. My pain from endometriosis had been FAR worse.

    If I had to choose endo pain or spinal surgery again, despite the full year to recover from spinal surgery, I would choose the spinal surgery. Every. Single. Time. Without hesitation.

  2. Thank you for this blog! It is going to make a difference.

  3. Labor was so easy and pain free compared to my endo pain! I didn't even know I was in labor until my last stage and she was ready to be born! I would gladly go through labor again every month then go through endo pain every month.

  4. Wow Lillyth. My spine surgery was more painful than my laparoscopies for endo. I had to have a fusion with interbody cage/bone graft, with pedicle screws. It could also be that I happened to have two of the most gifted and skilled endo surgeons in Dr. Albee and Sinervo at the CEC. ;)

  5. For those of us lucky enough to conceive and experience giving birth, I believe the consensus is that endo pain is worse than giving birth. My pain at it's worst before surgeries was off the charts. I couldn't walk, stand, sit, cry, think or do anything normal until Percodan's kicked in, as it felt that my insides were being chopped to pieces by a cleaver. I guess my story is positive though because the laporscopies worked by at least 80%. Now pre-menopausal, pain is intermittent and less.

    1. Yes. I believe nearly everyone I've talked to who has given birth and has endo feels endo pain is worse. I would not know from personal experience, however.

  6. I had an unusual start to my endo from what I've learned--the pain didn't kick in until I was 28 years old. That meant I had 15 years of normal menstrual pain to compare to endo pain.

    I submit the following comparison:

    * While wearing a fairly sturdy closed-toed shoe, bang your big toe off a door. This = normal period pain.
    * Take off the shoe. Take a full-sized cinder block and drop it, edge-down, onto your big toe from a height of 2-3 feet. An hour later, do it again--to the same toe. Repeat at random intervals, forever. This = endo pain.

    Regular period pain GOES AWAY when you take 2 ibuprofen or apply a heating pad for 20 minutes. Seriously. I went to school, went to work, did 3+ hour competitive gymnastics and full-contact martial arts practices while on my period with no problem at all before the endo started.

  7. I too went for a long time before my endo pain ' kicked" in. I thought it taking 3 yrs to get pregnant with my first daughter was just God's timing. Then a few months after she was born, in 10' , lovemaking became excruciatingly painful, then periods became torturous. It feels like an evil little troll is hacking away at my insides with a rusty saw while a forest animal is chewing at the same time,all while another evil troll is stomping on my tail bone and shooting fire down my legs. I had a diagnostic laproscopy done Oct 1st of 12 and got pregnant with our 2nd weeks later. About two months after Maggie was born, my endo came back with a vengeance! Without insurance and limited endo knowledge in my community, I bite my lip and literally play through the pain everyday at work and at home. It affects every aspect of my life. Sometimes I feel cursed. Then I thank God it's just this. It could always be worse, I guess.