My follow-up for Endometriosis! - Endometriosis UK

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My follow-up for Endometriosis!

Mollie99 profile image
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I had my follow up appointment last week, my endometriosis was found near my bowel. I have been told to control my symptoms they are going to remove my contraceptive implant and place me on the pill as the pill will lower my oestrogen levels more, which means the endo will grow less rapidly. Anyone else have this ?

Also, how likely is it to spread to other parts of my body/organs? Almost impossible to answer, I know)

Appreciate any feedback😊

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Mollie99
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Starry profile image
Starry

It seems a bit odd to me. Are you being seen at a specialist BSGE Endo centre or in general gynae? Usually bowel Endo is deemed severe and referred on to BSGE where they are specially trained to deal with it.

I had an an advanced Recto Vaginal nodule and seen at a BSGE. We first tried the mirena which is meant to be more effective than the pill then they tried zoladex. Neither worked for me

The risk is that RV Endo type can be hormone resistant and sometimes develops the ability to generate its own oestrogen. I think this was the case with mine, at least the drugs didn't work and I was unable to avoid surgery as there was risk of bowel infiltration.

It doesn't spread like cancer but it can cause damage over time by sticking organs together, penetrating into them eg my vagina (I lost 4 cm2 due to tissue damage) or distorting them out of shape eg my bowel ( pulled into a u bend) until they narrow then block. I had had mine my whole life so it had lots of time to do damagebeing only diagnosed age 42.

Overview of RV endo

endopaedia.info/subtype14.html

Biosynthesis of oestrogen

ncbi.nlm.nih.gov/pubmed/109...

researchgate.net/publicatio...

Hope this helps xxx

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