Do chocolate cysts mean endo is advanced?

Just found out I have endometriosis after getting ultrasound results stating I have chocolate cysts on both my ovaries. Read somewhere online that chocolate cysts suggest endo is advanced. Is this true?

I'm struggling to come to terms with it at the moment, I've only known for 5 days and I've been really down and have cried so much. My biggest concern is my fertility, as me and my partner were hoping to have a baby at some point. Has anyone else had chocolate cysts on both ovaries or advanced endo and conceived naturally?

Thanks x

3 Replies

  • Not really. It's a type of endo but it depends on the definition of advanced.

    If you mean does that indicate that endo is spread all over the place on everything (which would be my definition of advanced) then no, that may not be the case at all.

    Does it mean you have deep infiltrating endo -then yes in one or more ovaries but not necessarily on any other organs. Only a laparoscopy can determine the extent of spread of the endo, and also the depth of infiltrating endo and which organs and tissues are affected, not only by endo but also by the scarring, and the adhesions which in themselves can be just as problematic.

    It is more than basic endo lesions, but because endo is unique to each of us, there's no way to know from spotting a cyst on a scan, what the real situation inside is.

    Even levels of pain cannot show how good or bad the situation is, because just one small patch can be right on very sensitive nerves and give considerable pain, or you may be riddled with endo and be lucky(?) enough that most of it has avoided irritating nerve endings thus not be very painful but can still be causing significant damage in other ways inside.

    Because of the various types of endo, when you have a surgery, it will be mapped out and points are given for locations and for damage like adhesions, and things like size and location of endometriomas (some are easy to remove, some require highly complex surgery).

    These points add up give you a score which is either Stage 1,2,3,4 even 5 in the US systems of grading endo, or minimal, mild, moderate or severe in the British system of grading endo.

    Generally speaking an endometrioma would put you in the moderate to severe, which doesn't mean that you have endo all over the place as I said, although that might be the case, it does however mean that it is highly likely that specialist endo surgeon is required with training and skills and experience way above that of a general gynaecologist surgeon.

    It could mean extra surgeons are required, ones who specialise in the bladder or the bowel or the chest area (lungs & diaphragm) depending on where the rest of the endo is located.

    Most cases of endo do not end up requiring specialist surgery and a simple surgery by regular gynaecology surgeon is sufficient and this is usually the 1st op you have.

    If at that op, the sitution is found to be more complex you would then need to be referred to a specialist surgeon or team of surgeons according to what was found at the 1st op.

    Endometriomas can grow enveloping ovaries completely blocking off the pathway of eggs to the uterus.OR they may ust be attached to one side of an ovary or even only attached by a stalk, like a tethered balloon. Again this is best determined in surgery.

    Sometimes ovaries are so messed up by the cysts there is no point rescuing them. My left one was inside an endometrioma and was removed with the cyst because it was completely beyond saving and of no use to me and I don't miss it at all.

    Sometimes they can be cleaned up from the cyst and still be fully working ovary, quite capable of supplying eggs, whether that is for IVF if your tubes are also found to be blocked at the 1st op, which they will check, or for a natural conception if the tube to the healthy ovary is still clear. My right ovary was detached from an 8cm endometrioma that was stuck in the pouch of douglas, but it was savable and restored to its correct position and even after being shut down with GnRH drugs for several months is still a working ovary.

    There is an increased risk of needing IVF for conceiving a pregnancy when you have endometriomas, but it is far too soon to say and surgeons will do all possible to save at least one working ovary if not both of them.

    It is a concern but not something to worry about unduly, wait till the op and see what the situation really is before making any plans. You may be worrying completely unnecessarily and you could find both tubes are clear, and both ovaries have very easy to remove endometriomas on them. Even if just one side is compromised, and the other is still workable then you should still be able to try for a natural conception, and then if both are compromised there is the IVF options. It certainly is very early days at this point in time. Best of Luck

  • Unfortunately yes it does ( suggest that the endo is advanced in nature ) I haven't read the reply by impatient before I have answered but Yes it unfortunately is the case....that is according to Dr David Redwine and other American experts. If you are on facebook you may want to join the closed group EndoMetropolis where Dr Redwine and other experts are happy to answer questions and join in healthy debate to increase knowledge about endo and dispel myths also. It's a really good idea to look at endo specialists who are experienced in dealing with advanced endo and who perform excision surgery. It's a really nerve raking thing to face but getting as much info as you can really helps feel more in control. Hope this helps xx

  • My eldest daughter who does not have endometriosis had a huge chocolate cyst removed but went on to have 2 children without problems

    she did also get the help of a really good homeopath

    whereas my other daughter who has like my gusbands mother had horrendous endometriosis since age of 16 has 4 children

    one of them now has horrendous endo

    both that daughter and grandaughter also have hashimotos thyroid

    seems the autoimmune link is there plus both have gone gluten free

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