Endo Legs Nerve Pain

[Tricky19]

After reading this group posts, I understand what the doctors meant when yesterday said I was very lucky to be diagnosed with Endometriosis at 50, (as I am close to menopause, even though my period is as regular as ever) and on my first flare.

On Sunday, all the sudden and in the middle of my ovulating month, I had a pain similar to period but 10 times worse, I also got so bloated that seemed I was pregnant, eventually I managed to control the symptoms. In the morning the bloating was as bad and painful, so I went to the GP who sent me to A&E for tests. I had internal vaginal ultrasound which showed two cysts, one in each ovary the right one with Endometriosis, after I had a CT scan to discard other issues, finally, I was diagnosed with Endo.

I knew about the condition, but I never performed a deep research, now I have, and the Unkown Nerve Pain symptom blowed me away.

For 10 years I had back, legs & feet nerve pain, that after many investigations the cause was nerver found, all looked ok, for the amount of pain I experienced. MRIs, Ultrasound, cortisone injections nothing showed any problem or made a difference in the case of the injections or treatment. Therefore I now think is likely to be the Endo, however, I have the pain, tingling and numbness all the time, at different levels, worsening during periods.

Has anyone experienced the nerve pain all the times? It is really bad, I learnt to kind of ignore it, life continúes and it doesn’t go away, so have to live with it.

I have been referred to a Gyne, I probably will go for the coil treatment, has this worked for you, also, do you know if after menopause the pain disappears?

Thanks all for sharing your experiences, hopefully, the waiting lists will decrease soon and no one will have to wait that long for an appointment.

[Bubblepoppy]

hi sorry your going through this terrible disease I've had this for years too I recently had a hysterectomy for endometriosis too I've tried all sorts for my pains too I get the leg back and stomach pains everyday the hysterectomy didn't work out for me I'm waiting on a gyne appointment now and also going through menopause symptoms but as I kept my overies hopefully they will go away soon too I don't fancy having both the menopause symptoms and the endo pains, I've heard that sometimes it can go away with the menopause but sometimes it doesn't sorry to disappoint I hope it helps you when you go through it, I've spent the best part of 7 ish years on pain relief that sometimes doesn't work either but what can you do I hope your feeling a bit of relief today

[Dee_EndoUK Moderator Endometriosis UK]

Hi Tricky19

From the information on our website (endometriosis-uk.org), endometriosis pain after menopause is rare due to reduced ovarian oestrogen production, however, it can occur when HRT is used.

Wishing you all the best x

[Moon_maiden]

Hi

I was diagnosed in 2020 at 51, completely understand what you’re going through.

I’d always had bad periods/pain but got on. Unfortunately there is a possibility of nerve damage, I’ve likely got it in the abdomen. Since first lap, I’ve had hysterectomy (Lots of fibroids and enlarged uterus as well), bowel adhesions removed and gallbladder out. I didn’t make it to natural menopause it all blew up.

[Realtiger]

Totally empathise! Also diagnosed at 49 with endometrioma but had luckily never really suffered from painful periods. However despite having worked as a fitness instructor for 20 years since 2007 I've been experiencing severe back, leg and pelvic pain from pelvic instability, functional scoliosis (postural misalignment cause by muscle spasm/imbalance rather than congenital condition), nerve pain, weakness in my right leg and exercise intolerance. When everything twisted out of alignment I felt like a human corkscrew and it was excruciating!

I was diagnosed with fibromyalgia in 2011 but by 2015 it had got so bad I thought I was becoming disabled. I found a brilliant physio who has worked with me to get me out of the pain spiral, and restore function and strength. When I told him about my endo diagnosis four years into treatment he said it was like having the missing piece of the jigsaw. You might find it helpful, if within your means, to find a physio who specialises in pelvic floor dysfunction and pelvic /spinal stability.

[Tricky19]

Thanks all for your time responding. Sorry to hear you have gone and are going through so much. Hopefully, we will not be one of the rare cases and the menopause will fix it all regarding the endometriosis.

In A&E they found a 5cm endometrioma, simple cyst and fibroid, a bit of all. The blood tests have com back with what seems a higher CA125, they want me to have another one in six weeks to see if it increases. To be honest I don’t want to have to be waiting until something bad gets worse! So if something doesn’t look right…I want it out.

I am visiting a Gyne on Friday, I will have more time and other point of view than with the ones in A&E, which by the way they were also great. NHS will also book different things for me.

The women in my direct family had a lot of gyne issues, my mum had hysterectomy at 46, my sister at 42, my niece at 38 this case was due to a rare cancer…which she is clear of, thank God, another nice had cyst removed too, so sounds issues in this part of the body run in the family.

Regarding periods, to be honest, I think women put up with a lot thinking is normal, however, is not always the case. I never had more than 3 days with pain, and always able to control with pain killers, but thinking back… I did struggle some of these days… but is just period, normal. I had bloating for a long time time too. However, last week, in addition to being out of the period week, was su much worse this is why I went to the doctor otherwise, if went within hours, probably would have thought… menopause changes and would not have given more importance.

Realtiger I was also diagnosed with fibromyalgia, early 90s, however, I don’t think it was or the physios I had were also really good for muscle pain, until I used them , it was very bad.

Funny enough, last weekend I did Yoga at home, both days, went for a couple of walks, no long though, my nerve pain was kind of gone, and felt so good, then I had the scrutinating pain. I don’t exercise, so the first question from my partner was if I had overdone yoga! 🤣

I wish you all a good week, with as little pain as possible.