Legs pains and endo?

[Ellie_B0w]

Hi, I’m new here and looking to see if any other women with endo have similar leg pains to me. I’ve had two laps now but at the start of 2016 I had my second flare and with it came other symptoms - bladder & bowel problems as well as difficulty walking. I had my lap in September which confirmed the endo had spread to my bladder but I found none of my symptoms had really improved unlike the previous lap. In January 2017 I had pins and needles in my feet & lower legs and had two days where I couldn’t really walk. Since then I’ve had contstant pins and needles in my lower legs which sometimes travels. I also get a myriad of other pains/sensations throughout the month, which can affect how much I can walk. Tiredness and activity levels also seem to make the pains/weakness worse. My gynae doesn’t think it’s linked to my endo as she’s only ever known it to affect upper thighs. A neurologist told me it was unlikely, as it’s affecting both legs, but couldn’t tell me what was causing it. I just wondered if anyone has any thoughts or similar experiences - they would be welcomed.

Thanks

[Penelopeel]

That sounds scary and exhausting. I haven’t had those symptoms but endometriosis seems to be able

To imitate anything it likes. For example My friend gets terrible heart palpitations that went after her endo surgery. Have they done an MRI OF YOUR LOWER SPINE AND PELVIS??? lots of people here post about hip and leg pain and someone had sciatica that was found to be due to endometriosis.

[Ellie_B0w in reply to Penelopeel]

Thanks for replying. Yes I’ve had an MRI and nerve conduction tests but the neurologist didn’t know what it was and put it down to my body being exhausted. That was eight months ago and my symptoms haven’t improved.

I have seen posts about hip and leg pain but they seem to be upper legs.

Thank you x

[Ellie_B0w]

Thank you - I’ll have a look at her website.

[Starry]

I've had all of those symptoms so empathise. I find it's better if I use a u shape cushion to protect my coxxcyx so you could try that which would likely help prove that it is physical. It's not stopped the tingling though.

My Pain specialist thought it was structural nerve pain from in my case Post op inflammation and offered a trigger injection of corticosteroids and chriocaine.

It might also partly be functional pain when the pain system just stops working properly and sends pain signals without any good cause. If it's that gabapentin or pregabalin are often prescribed.

It may also be worth talking to your doctor about the possibility of fibromyalgia or lupus which are sometimes associated conditions with endo. I'm having blood tests for inflammatory markers and have been referred to a chronic fatigue clinic.

[Ellie_B0w in reply to Starry]

Thank you for telling me, it’s really helpful. I’m sorry you’re also going through something similar but I’m relieved to know it’s not all in my head.

I’m currently taking pregablin so that might rule one possible scenario out. I’ll definilty push with my consultants to try and get to the bottom of it - I just wasn’t sure if it could be because of the endo.

I hope they also get to the bottom of your pains and are able to help. I know how exhausting it can all be so I truly wish you the best x

[Starry in reply to Ellie_B0w]

Glad I could help a little.

If you are still having bowel symptoms have you had a sigmoidoscopy or colonoscopy to eliminate endo inside the bowel. Also worth finding out if the surgeon checked the pouch of Douglas and utero sacral ligaments. They are areas associated with causing back pain. Could they have left any endo behind?

My symptoms came on post op and go full length too so it does sound like pressure on a nerve, perhaps the pudendal or coxxcyx. Worth pushing for a pain specialist review if the pregabalin is not helping

Are you at a bsge centre?

[Ellie_B0w in reply to Starry]

I know I had it on both my ligaments but I’m not sure if it was in the pouch of Douglas, or if it was checked.

The gynae I’ve been going to for the past 4 years specialises in oncology. I’ve only really found out about the endo centres recently so it’s something I’m looking at - especially for help managing pain. Every time I bring those topics up with her she tells me she’ll speak with a colleague but then I never hear anymore...

Your replies have been so helpful, and very much appreciated x

[Starry in reply to Ellie_B0w]

In which case it is a possibility they have left bowel endo in situe as they aren't licenced or skilled enough to do the excision for it (endo excision can actually be more complex than oncology) or perhaps didn't spot it all.

Your GP can refer you as a refractory case (where symptoms still continue after treatment) as your gynae is unwilling to and has fobbed you off.

This is the NHS treatment specification for severe endo and refractory endo and explains rationale for and method of working in a bsge endo centre.

google.co.uk/url?sa=t&sourc...

This is the bsge accredited Centre list.

bsge.org.uk/centre/

I would also request a copy of your surgery notes to get more detail on what was found and what excised.