Endometriosis UK
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Is it Endo or adhesions, Drs will not help me now

I'm currently back under investigation again for pelvic pain on left side. It's the same pain I've had for 27 years and I had a hysterectomy and bso in February 2015. Previous to that I had 6 months of decapeptyl injections and I felt great, no pain at all, it was wonderful, so I was full of anticipation for the hysterectomy bso to work.

How wrong was I. It has progressively returned since then.

They removed my cervix in February 2016, but it's no better.

My gp thinks its undiagnosed endo or that was not found or removed during the operations, but I'm always met with consultants who are quite dismissive.

For example, my mum, aunt and both my daughters have endo but the consultants tell me it's not hereditary, decapeptyl is used for endo and pain disappearing is a clue that it's endo, but again they say not. I was told by the hospital last week it does not mean It’s endo or fibroids when the injection cures the pain, as it works for all sorts of conditions relating to hormones, and they do not know what it worked on for me, as I was like a new woman on it, totally pain free.

I had a deep ct scan on Friday on bladder renal area, but the pain us always in my hip bowel and left bum cheek. They said it shows inflammation in that area but not sure what is inflamed, ie the joint, ligaments ?

It would be wonderful to hear from anyone who has/had a similar situation and if they could let me know what and who helped them, as they have said nothing more they can do gyneocologist wise as I’ve nothing left. I can barely walk some days and my bowel is so sore on this side at times.

Many thanks 😔

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I had a total abdominal hysterectomy due to severe endometriosis and excrciating pain down left side. The consultant explained to me that the sites of endo can produce a thickening of wall linings & tissues which is more than likely the cause of this pain on the left side but unfortunately this could not be cured. I retained my ovaries as the consultant felt that although a hysterectomy would relieve a huge amount of pain i suffered I would still have sites of endo that cannot be removed. I am feeling so much better in myself a year on from op but I do still get hormone issues, mood swings, fatigue etc prob due to retaining the ovaries..... I also often have a heavy dragging feeling in bowel area which i used to get prior to op but the only difference is I no longer get the relief of a bleed! This always settles in a day or two. I am currently prescribed Livial Tbolone 2.5mg per day to boost hormone level.

I totally understand the annoyance and disappointment you feel suffering as you are. I would suggest you visit your GP and ask if it might be thickening of tissues/scarring??

Good luck and stay strong! xx

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