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Not Sure What Symptoms Mean

Hi, I found this great website and came here looking for answers. This is a longer one...

I've been doing a lot of research on endo lately because off and on since February/March of this year, I've had this pain in my lower right abdomen and in my lower back (also on the right side). I've gone to my PCP and was referred to a Urologist to rule out bladder/kidney stones. I had an ultrasound, CT Urogram, and cystoscopy and all the results came back as normal. The urologist said that I have trace amounts of blood in my urine (hematuria) but I must be in the small percentage of people who just "normally" have that.

The pain is centered below my belly button and to the right. It's uncomfortable to lay down, sit for a long time, and sleep. However, when I'm up and walking and moving, I don't really feel it. There's been a few weeks where it has almost completely gone away. Other times it flares up (like this week) and it feels like constant aching pain. Sometimes it has a sharp, quick pinching pain depending on how I move. It's like a heaviness in that one spot that won't go away now. I'm not doubled over in pain, but it's very uncomfortable.

I'm trying to make an appointment with an OBGYN soon and use that as another starting point to try to figure out what this is. I have had basically "normal" periods since I was a teenager (I'm 29 now) and have had the usual cramps and they went away after my period ended. No excessive bleeding or heavy periods either. I'm not sure if all of this could possibly point towards endo or cysts or not. I always thought endo meant heavy periods but I've read that's not always the case.

This pain has been giving me issues and anxiety for almost 6 months now and I'm getting very scared because I don't have any answers yet and I've never felt pain or had any health issues like this before. As I'm typing this I have a heating pad over my stomach and it's not doing much. The best way to describe the pain is that it feels like someone is constantly poking me and pushing hard with their fingers in one spot with the mild cramping in my lower back.

Does this sound like it could be symptoms related to endo or cysts? I'm trying to get a better idea of what's happening and what to say when I hopefully get in to see a GYN soon. And not knowing if this is considered "bad enough" to be what I think it is. I know there's a lot of testing done to rule out things. This is taking a toll on my mental health too with anxiety and not knowing what to do to help this pain that won't go away. Any thoughts and advice are appreciated!

  1. That is the ileum flaring up. Could be related to IBD or Endo since it is subject to various kinds of inflammation. If it is constant and there are no other concerning symptoms directly pertaining to your cycle, I'd suggest seeing a gastroenterologist. If it is definitely only occurring around your cycle and other concerning symptoms are present, then the gynecologist would be helpful.

    1. Hi , goodness my heart is going out to you while reading this! I totally get feeling scared and anxious about not knowing what is going on with your body and how to make it feel better. That's really tough to go through. Just know, you are not alone in feeling this way and you have our entire community to support you! Unfortunately, we are not medical professionals and cannot give out medical advice here. I am going to, however, leave this article here if you'd like to take a look at it as it mentions a few of the symptoms you mentioned here: Were you able to get an appointment with your GYN soon? Thinking of you and sending lots of love your way Shannon! 💛 Kayleigh, team

      1. What I’ve done dealing with endo for 11 years is doing my own research and being my own advocate.. Somtimes we know more about endometriosis then our doctors do.
        Be a voice not an echo❤️❤️

        1. do you take any medications, birth control pills etc?

      2. I do not, I’ve been on everything for my endometriosis I use to take birth control pills I’ve been on the dep shot, lupron and orlissa but all the side effect including weight gain made me miserable, so I am not on anything right now and refuse to go back

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