I was just wondering if any of you have experienced recurring pains (endo pains) shortly after surgery, when you've been using contraception too? I had my second lap in November to remove stage 4 endo from my bowel, ovaries and pelvis, and despite a few ups and downs the last 6 months have been RELATIVELY ok...
... but the last few weeks I've been getting the same old pains back (no regular periods - random spotting and bleeding so can't even keep track of my cycle), I get really bad period-type pains after going to the loo (number 2 - sorry TMI) which last a few hours and need painkillers. It also completely floors me in terms of energy and makes me feel quite emotional, as all I can think about is that the endo has come back (or, not all of it was removed). As well as that I get very random shooting and stabbing pains through my pelvis and back and thighs, which again, I used to get.
Has anyone had similar symptoms? Or could it still be the coil settling? It's been 6 months but not sure I can handle too much longer! Thank you xx
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Nicola2401
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I had excision in August last year and was still suffering, I have the mirena coil and had prostap for 9 months from January last year. Had my most recent lap last Tuesday. My consultant said that endometriosis was everywhere, I had my left uterosacral ligament removed due to having a large nodule there, my pelvic wall stripped, my peritoneum stripped, endo and adhesions removed from organs and I also ended up losing my righr ovary and tube. I am gutted and feeling very emotional at the moment. I was more surprised that the endo still managed to grow back so quickly and so extensive even with being on the coil and prostap. Obviously everyone is different but I just thought I would share my experience with you.
Thank you so much for your reply, and I'm so sorry that you've been through all this - huge hugs to you too. I really hope you're making a good recovery and that your symptoms improve and you can be pain-free now. I'm not surprised you're feeling emotional, it sounds like it was a really extensive lap that you had. I hope you've got lots of people around you for support <3.
On the endo side of things, thank you for sharing and that's really interesting to note. I've read so much online (not ALWAYS the best place to go, I realise that) and some say that the coil etc is "the leading" treatment to help keep endo at bay and that it would take years to come back (if at all), and then the next post will be from someone saying that the coil didn't protect them at all and that theirs returned really quickly. It's just impossible to know where to turn. Even though my lap was in November I feel like it was only 5 minutes ago, so the thought of booking another appt with my consultant fills me with dread! Need to decide what to do next...
Some types of endo, particularly advanced severe cases can be hormone treatment resistant. This was observed early on by Redwine. Its now known this is because they develop the ability to synthesize and receive their own oestrogen.
Wherever there are oestrogen receptors, aromatase and cholesterol there is potential to biosynthesise oestrogen. Endometriosis cells have this ability and oestrogen is produced in situ within the cells and passed straight to the receptors thereby avoiding dilution into circulation. Normal endometrium of healthy women does not express aromatase but the endometrium of women with endo does.
Potentially, but not necessarily in all cases. The drugs can work well for some ladies, but it definitely happens in some typically more severe cases, which explains the mixed results from hormone treatment and oopherectomy.
I understand certain endo types are more likely to be resistant than others, with severe recto vaginal nodular endo types in advanced stages (such as I had) being one such scenario.
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