Reader’s Choice: Small Endo, But Big Pain?

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One of our readers, Jocelyn, emailed me this question:

Hi Lisa,

Thanks for doing this! I was diagnosed with Endo in May 2017. After of course many ultrasounds, bladder scans, colonoscopies… you name it. The laparoscopy in May only revealed 2 very tiny cysts on my ovaries. My doc was able to get a tiny sample sent it off and then after much debate, they gave me the Endo diagnosis. My pain was very severe. I could barely complete normal activities without taking either 800 mg of ibuprofen every 2-4 hours, tramadol, rest, etc. With that being said, my question is even if the Endo is so small can it still cause a great deal of pain? I’ve heard women who have Endo all over their bodies. I tend to question myself because the cysts were so small. I apologize for the ridiculously long response. It’s just been very heavy on my mind. Thanks for listening and all that you do!

Best,
Jocelyn

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Hi Jocelyn!

Thank you so much for responding!  I’m glad you received a diagnosis; helps to know that the pain isn’t normal!  AND your response was not ridiculously long at all.  So there! 😛

To answer your question about heightened pain levels, even though your Endo is “so small”…it doesn’t matter the amount of Endo you have.  Pain is pain is pain.  And this disease can cause havoc!  I did a bit of research about this topic after my 2014 diagnosis and women with Stage 1 Endo (which sounds like what you may have) can have extreme pain…while some women with Stage 4 Endo (which is as bad as it gets) have little to NO symptoms or pain.  Isn’t that bizarre?  Some women with Stage 1 Endo have NO pain while some do…the amount of the disease found in your body DOES NOT dictate the level of pain.  The presence and ferocity of the pain of the disease is different for every person, regardless of their “Stage” level.  Do not let your “small cysts” devalue your pain or belittle your illness or suffering.  Never let anyone tell you otherwise.  

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Permission was granted by Jocelyn to use her name and publish this Q&A.  Hoping this Q&A session helps answer some questions that other EndoSisters or their support systems may have.

11 thoughts on “Reader’s Choice: Small Endo, But Big Pain?”

  1. I completely agree with Jocelyn here. I have minimal endo but on my uterosacral ligaments and pouch of douglas, amongst other places. And two very painful places. I’ve known some women that were literally ‘tangled up inside’ for 20 years before realising that those monthly twinges were far more severe. So don’t think that you should or shouldn’t be in as much pain as you are; it’s your pain.

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          1. I’m no doctor, so you may be right. And depends on who you ask: some people say Endo doesn’t move and it lives where it lives and will never be anywhere else. Some say it travels and festers anew. My endo in my second surgery was *almost* in the exact same places as my first surgery. It was in a few of the same places as before, it had also disappeared from my liver, and it was in NEW places (ureter and bowel).
            Here’s a visual of the POD location. https://www.ncbi.nlm.nih.gov/projects/pmh/PMH_Authoring/media/Images/medium_thumbs/index.media.c00be8b201057361facade8560ace73fv1.jpg

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            2. Question. My lap will be in CD 19. It would have been perfect if my lap were today because today was CD 5. I usually ovulate on CD 12 or 13. Is it possible to get pregnant. Is it possible to try during fertile time and then on CD 19 have “stuff cleaned out” for embryo and then get a BFP?

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  2. I love this so much, our pain is our pain, every body is different. Endometroisis no matter how “small” still can affect quality of life. This is why it is important we acknowledge like you said, pain is pain, is pain!

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