Endometriosis Nerve Pain / aching in glutes / hips / pelvis - will a hysterectomy help?

[laf1977]

Hello! I've just had my 4th lap for stage 3, deep infiltrating endo. I wanted my surgeon to get to the root of my nerve issues - constant pain in lower pelvis, wrapping around hips and into the glutes, sometimes down the thighs. However I am no further on with an explanation for this pain and getting more and more frustrated. Does anyone have answers or has had a proper diagnosis on nerve related pain? Is it damage caused from all the previous ops or maybe endo attaching to nerves? I don't understand why specialists at BSGE centres aren't listening to these symptoms when so many of us complain of the same debilitating pain. It lasts for around 3 weeks of the month. And now not even sure if a hysterectomy will cure the nerve pain - maybe even make things worse?? Any advice would be much appreciated! Thank you

[Sunshine91]

Hi. I’m sorry I don’t have answers but I’m going to follow as this is what I suffer from. I had my second lap on Monday so I’m hoping things ease off again but my leg pain before my lap was worse than ever. In particular on my right side. My endo specialist said it may be that my nerves are damaged and it will never get better 🙁 I might try physio once I’m fully recovered x

[laf1977 in reply to Sunshine91]

Sorry to hear this... it's my right side too mostly! I hope you're doing ok?

I'm getting a second opinion but also read this: blog.possover.com/en/endome...

Such an interesting insight into all the pain I have.

I'll let you know if I get any answers!

[Claire_2018]

Hi

I had a lap last year to remove a cyst and ever since then I’ve had dull nerve pain in my lower pelvis which lasts for about two weeks of the month mainly before my period is due. I’ve had scans at the hospital and they can’t see anything so they can’t diagnose anything. It’s probably a combo of nerve damage and Endo in your body reacting to hormones. ( I feel like you have to diagnose yourself!)

All they have said to me it’s something I will have to live with and like I say it’s a dull ache pain which is manageable with paracetamol.

If it’s really deliberating like it sounds it is then keep pushing for answers. I’m no expert but wouldn’t have thought a hysterectomy would solve any nerve issues and would be an extreme measure. Hope that helps and you get some answers.

[laf1977 in reply to Claire_2018]

Hi, I'm sorry to hear about all your nerve pain and endo issues. Deep infiltrating endometriosis can attack the nerves - really interesting blog post above - take a look. It's hard to know whether it's damage from previous ops or endo attaching to nerves... problem is there isn't a specialist in the UK dealing with this.