Hay ladies, just after some advise and possibly some hope. March 2016 I was first diagnosed with endo and in Oct had it removed form my bowl, pouch of Douglas and uritha. Since my op in Oct Iv slowly been feeling worse than ever. I'm due to go to a pain management clinic as my doctor says there's nothing else they can do. I'm convinced it's still there and theyve missed some,but that notion keeps getting ignored. Has anyone else just felt totally worse from having it removed. I'm now 10 months post surgery, and my systoms are horrendous, more so than I have ever experienced. Sex has sometimes been painful but now it's totally agony, it makes me cry and ache inside until the next day, it's breaking my partners heart as he think it's him hurting me. I feel at such a loss... I'm so tired I could sleep for about 14 hours a day, Iv got no want to do much, my hobby have fallen by the way side as motivation is non longer there, I just wanted an op and start to feel a million dollars but Iv ended up with the opposite... Please someone tell me this won't last and it wasn't a mistake, sorry for the rant ladies xxxxxxxx
Any thoughts : Hay ladies, just after some... - Endometriosis UK
Were you treated in a bsge centre? That sounds like a big op with several organis involved.
I also had symptoms persist and some new ones after surgery (but i was ill with viral meningitis after my op and have since developed fullblown ME) . I had a rescan and no endo was shown. It is possible but very uncommon for endo to be an rare aggressive type and regrow, especially if thoroughly treated in a specialist bsge centre.
I was then seen by a pain specialist and it did help, though i first went through a complete meltdown stage for not beimg better after my surgery so i totally relate to how you feel. I also had to have counselling and cbt to help me cope.
Unfortunately surgery has risks and can cause as well as cure pain as you can get nerve damage from the surgery and also develop painful surgical adhesions.
In addition your central nervous system can get trigger happy and send unhelpful pain signals without due cause as its so used to chronic pain.
Along with pregabalin I found the retrainpain.org site very useful to help understand and self manage my pain. The neville shone pain book is good as is the paintoolkit.org website.
Thinking of you
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