Telephone Consultation

[Ema4390]

Good evening ladies,

I have a telephone consultation tomorrow with my gynaecologist. Having had new and ongoing crippling lower back,nerve pain and terrible hip and buttock pain, all following on from excision surgery (uterosacral ligament April 2019).

Am I within my right to request another laparoscopy? As I can only assume that more endo has grown back elsewhere. Perhaps infiltrating my sciatic nerve? My previous surgery was deemed ‘successful’, so the gynecologist has always dismissed my suggestion that perhaps it’s just more endometriosis, whilst my new symptoms written off as only ‘sciatica’ by GP’s and orthopedics, which will improve with time (its only got worse) and who have only recommended physiotherapy with no improvements. I would be so grateful of any advice, as I am just being fobbed off, dismissed and told there is nothing they can do for me to manage my pain! I’m incredibly disheartened having very little quality of life.

Thank you so very kindly x

[Moon_maiden]

If you haven’t had MRI, maybe suggest it to look for deep endo.

I couldn’t switch mine last week to a telephone appointment as they’d switched hospitals. By the time I was in there forgot everything due to pain, even list, complete waste of time.

[Ema4390 in reply to Moon_maiden]

Thank you so very kindly your replies Moon_Maiden. I truly appreciate all of your kindness and thoughtfulness in taking the time to reply to me.The support and knowledge shared on this platform is so reassuring and invaluable. Especially how isolating and disheartening this condition and it’s poor management can be!

I previously had an MRI ~6 months ago but it was only of my sacrum and lower lumbar spine which detected the herniated L5-S1 disc, it was through an A&E admission. No mention of endometriosis but I honestly believe that they were just ruling out spinal cord compression/narrowing/emergency type presentations and perhaps didn’t even think to look for possible further endometriosis. None of my other scans have ever detected any previously. Thank you for your tennis ball trick, it’s really helpful! My telephone consultation went okay. The consultants does believe now that there may be more, perhaps infiltrating or in and around the area of my sciatic or pelvic nerves which might explain my pain. He wants me however to try Depo Provera injections as a last option before another surgery!

I hope you are well. Thank you. Take care E x

[Moon_maiden in reply to Ema4390]

Glad the tennis ball worked and you’re getting somewhere now with the consultant.

Mine is the same with trying Zoladex, I’m hoping when he sees the CT results, and speaks to the MDT, they’ll change mind and get rid of it.

Hope you get something working very soon. Take care

[priyainindore]

Hi there, have you seen a physio who specialises in women's health? I'm getting similar pain now - still awaiting my first lap, but trying alternative therapies first.

It maybe that the area is particularly tight, and you may need to release the piriformas area where sciatic pain manifests. Just a thought. x

[Moon_maiden in reply to priyainindore]

Tennis ball can be quite good for releasing that area. Best to try lying on the bed, so it’s softer underneath, only a couple mins in any one spot max and if too painful stop straight away. It’s a tough muscle to get to.

[Ema4390 in reply to priyainindore]

Thank you so much, upon your suggestion I have researched additionally piriformis stretches (over and above the one I was simply doing before). There is definitely a difference in strength and movement from my ‘normal’ and ‘affected/troublesome’ side. I have seen an advanced practice physiotherapist who apparently specializes in pelvic pain through a pain management service referral.....she gave me 1 breathing exercise and no great insight into how to improve my situation. It was such a frustrating & disappointing experience! I have found that using a tens machine over the area does help too if you haven’t already used one. Thank you so very kindly for your reply! Take care E x

[priyainindore]

p.s. I saw that you have been referred to physio, if you can get some private sessions with someone who sees women post-op, they can help release the muscle tension in the area, and strengthen the area. Alongside of course getting and MRI.

[Hidden]

Hi,

Im in the middle of a situation like this at the moment. Im under a physio and ive had an mri of my spine which showed disc dengeration at the l5-S1 disc. But they think that its more nerve related due to the pain im having. I cant sit comfy, i cant sleep on my back or right side. The pain i have radiates from the bottom of my spine all the way round to my right hip. I get pins and needles plus electric shock type pain down both my legs. The physio thinks that there is something pressing on a nerve. I had a full pelvic mri through gyny/colorectal just before lock down but haven't had the results yet. The physio wants to wait for my pelvic mri results and to see what gyny thinks before proceeding with any treatment suggestions as i cant do any of the physio exercises. Id definitely say see a physio and they may suggest an mri scan. Gps have fobbed me off with sciatica for 5 years! I think my gp finally referred me to physio as i broke down in tears and told her i couldnt cope with the pain.

[Ema4390 in reply to Hidden]

Oh my goodness, it’s both a release and a sadness to read how similar our experiences are! I don’t know where to put myself half the time and there is no escaping or let up of the pain. I’m convinced there is some nerve compression element involved in my overall situation, but have simply been told that with physio and time the disc degeneration will ‘heal’. Sadly I’m only but getting worse 13 months down the line, in spite of trying lots of of different things. I found that a tens machine is helpful in providing a good distraction, especially so when you find those very painful/ tender spots! The pain has also worn me down completely and moves me to tears so often. I can empathize with your experience. It’s terrible that often we have to ‘break down’ for our pain to be ‘believed’ at best of even acknowledged and sadly excessive pill popping of pain relief seems to be one of the GP’s only forms of management.

Thank you again for your time and thoughtfulness. Take care E x

[Moon_maiden]

How did your call go?

[priyainindore]

Have you tried some private sessions as they can manipulate and treat the area? I found NHS physio unhelpful as they don't even touch you. Or acupuncture might help? I agree I feel like something is pressing on mine.