Endometriosis survey (very scientifical)

January 13, 2010

So, I know one of the signs of endometriosis is bad cramps. And clotty periods. But what kind of cramps are we talking about here? And what kind of clots? (err, if you don’t mind me asking)

I’d like to conduct an informal survey in my comments here: do/did you have endo? What were your cramps/pains like? What other symptoms did you have? Clotty periods — if so, what do you mean by that? Or did you have no symptoms at all?

I’d really appreciate seeing your input!

I am just trying to figure out what I should be on the lookout for.

My period started today — oh joy! — and I have my typical first-day-of-period cramps: uncomfortable but not debilitating. I assume these do not qualify as possible signs of endometriosis … although I know you can have endo without the signs. I have also, honestly, never really paid attention to the consistency of my menstrual flow and whether it was clotty or not. I used tampons and did not really notice. So, I am trying to be more in-tune to that now, which is charming … but I am not exactly sure what I am supposed to be looking for.

Hopefully, when I see Dr. S next month he’ll go through all the possible endometriosis stuff with me, and schedule a lap to look for endo, just in case. But in the meantime, I’d like to be more aware.



  1. I have stage IV endo (meaning its about the worst you can have) and I didn’t have that many symptoms. I didn’t have the debilitating pain that most women talk about. I would have a rough first couple of days on my period. I would just start dosing up on aleve or advil a couple of days before I would start. Back pain…cramping…very heavy flow and major clotting (meaning just about everything came out in a gelatinous like form if that makes sense…ugh that sounds so gross!). During your period, your body will release anticoagulants that keep the blood fluid and thinned. However, if your flow is extremely strong, the blood may pass before the anticoagulants can work. In this case, the blood may clot as it is passed.

    I did have a handful of episodes where I would spend hours in the bathroom…going back and forth from a hot bath to the toilet. I suffered from diarrea just about every cycle (which is a symptom of endo) but every now and then I would get extremely nauseous as well. So that was fun šŸ˜‰ My belly would actually hurt to the touch from so much cramping. But ignorant me never got it checked out (I think I was in denial and blamed it all on stress). This happened probably less than 10x in about 18 years.

    My sister on the other hand who has stage IV endo as well experienced a lot of pain and cramping for years.

    I actually got myself checked out a year ago because I thought I had PCOS and figured that was why I couldn’t get pregnant (found out thats only part of the problem).

    You can check out my blog that chronicles the journey in the last year. I hope it is helpful…if you have any questions please don’t hesitate to ask. It makes all the difference knowing you are not alone šŸ™‚


  2. I was searching everywhere for others with Endo … i have stage 4 endo and well i agree with everything the she has posted here … i get days with extreme migrines, cramps (can very.. even keeping me bed ritten) …. and i had times where i had to go to the ER from loosing so much blood during my period… sometimes it seemed unreal.. but i had great days where you would know endo doesnt even exsist..

  3. I was diagnosed with endometriosis in June of this year 2010. For the first 8 or 9 years of getting my periods, I experienced nausea, vomiting, frequent loose bowel movements, pain down the back of my legs, lower back pain and extreme cramping. The pain would cause me to miss school, work and other functions. As the years went by and I got into my twenties, I also developed other symptoms with my periods, I did in fact start having clots also extreme PMS. I also developed lots of intestinal issues such as irritable bowel syndrome including severe bloating, gastritis and gluten sensitivity. No one ever suggested to me that I might have endometriosis, even though regular doses of pain relievers did not work. I ended up doing my own research online and found out about endometriosis. I learned that many women who have endo also have the bizarre period symptoms of leg pain, irritable bowel syndrome as well as gluten intolerance. This made a light bulb go off in my head and I pressed my GYN to consider giving me a laparoscopy. She had not been previously convinced that I had this disease by my symptoms, until I told her I also had IBS.

    I hope for your sake, that you do not have it. Many women have bad cramps during their periods and do not have endometriosis. Having said that, there would be no way of really being able to tell if you have it or not other than getting a lap.

    God bless
    and I wish you the best with your health.

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