Cutaneous endo

Hi all. I was diagnosed two years ago with endo and had my lap on dec 2013 to remove the cyst. I since fell pregnant and had a beautiful boy but during this time I have developed small lumps on my hands and fingers. Having been referred to a vascular unit they think it could be cutaneous endo where small deposits if the endo end up in your extremities. Aparantly they've had 3 cases of it on the same day??? Has anyone heard if it or experienced something similar??

3 Replies

  • I have never come across it in the skin of hands.

    There's a book online published only a few years ago called Extragential Endometriosis, that defines Cutaneous Endo on page 132 as "involving the skin limited to the anterior wall below the umbilicus (belly button). "

    And that is certainly where all of the cases discussed on this forum in the past have had their skin endo. The majority of cases occur after some form of pelvic surgery causing an accidental transfer of endo cells either from endo or the uterus (during a C-section delivery for example) getting trapped in the skin wound for that surgery. Belly button hole for a laparoscopy is by far the most common location for that type of op, and the laparotomy scar for C-sections.

    So far, running a google search i cannot find a single thing- not one hint of cutaneous endo of the hands, which calls in to question your hospital getting 3 cases in single day. Something is not right.

    I rather suspect either you have misheard the doctor's diagnosis, or your Doc used the wrong phrase to describe the condition.

    Your doc might be right and you do indeed have skin endometriosis of the hands, but if that is the case, why is there absolutely zero info online?

    To be absolutely sure, you could call the unit and ask them to check your records and spell out the term used, as your possible diagnosis, or wait till a report it sent to your GP and check it there.

    There are so many skin conditions, I would certainly double check that it is cutaneous endometriosis and not something like

    Cutaneous Dermatomyositis ...... which when spoken could be confused with endometriosis, as it sounds similar,but is very different condition.

    and the wiki page

    which says ....

    "In cases that follow closely after pregnancy, some research suggests an immune response to lingering fetal cells still circulating in the mother"

    There's a few pictures for that condition online - google "gottrons papules" so you could check if they match what yours looks like.

    If it is genuinely is endometriosis- then each lesion would be surgically removed, the same as would be done for cutaneous endo below the belly button.

    Sorry can't help more than that. I can't find any images or records or research papers online about "endo" spreading to hands as you have described.

  • Hi Littlebubba- any luck speaking to the vascular clinic in identifying the term used?

    Could you let me know when you have an update on the situation.

    I am always curious about endo in weird locations and if this does turn out to be endo then it's another one to add to the list.

  • Hi impatient thanks for your searches! I did a few of my own and didn't find anything either. So strange. Just had some scans and waiting for the results. Will def keep you posted! X

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