FND/pelvic pain

[NicoleF33]

hey I’ve been reading lots of the stories on here and so much great info regarding this.. can I ask has much people suffered with chronic pelvic pain and burning sensation all over there body but can be worse when laying down or in both feet?

[Louiselovesyellow]

I get pain in my pelvis - hip pain that burns when I lie on that side for a while, pain when I walk, pain if I sit for a while. I also get pain within my pelvis deep in the left hand side crease where the leg meets the body and within the pelvis after I have emptied my bowels. I also get a burning pain in my big toe joints and have tender feet to walk on. I should mention that I get these burning pains in my knees as well and pain in all my knuckle joints.

[NicoleF33 in reply to Louiselovesyellow]

Thank you for your reply, have you ever looked into endometriosis for the pelvic pain? As I get extreme pain in the pelvic/buttocks region all the time and worst when I’m sitting.. but now the nerve type burning pain has now gone all over my body

[Louiselovesyellow in reply to NicoleF33]

I already have endometriosis so that’s probably what it is. I’ve got a Mirena coil for the pain as it was so unbearable xxx

[NicoleF33 in reply to Louiselovesyellow]

There seems to be a link with endometriosis and FND? I’m in the process of looking into endometriosis as all my symptoms started with pelvic bladder problems and moved down my legs buttocks hips etc with burning type symptoms. Can I ask was your endometriosis before your FND diagnosis? So sorry you have to go through this it’s horrible I feel your pain x

[Jellofabulous]

I’ve lived with chronic pelvic pain for over a decade. I know it’s one of the contributing factors to why I developed FND and lost the ability to walk. My brain has disassociated from the lower half of my body for so long that it rewired to avoid it. I’ve done pelvic and Neuro pt and it’s been incredibly helpful. I have had to relearn how to walk many times but I’m doing much better now.

[NicoleF33 in reply to Jellofabulous]

So Happy to hear that! Did drs know why you had the pelvic pain? Was it Endometriosis by any chance? As I’m looking into This at the moment, all my pain started with pelvic/bladder type symptoms and then travelled down my legs into both feet now my body burns all over like I have central sensation.. I will def look into the neuro PT as I’m doing the pelvic floor PT at the moment x

[Jellofabulous in reply to NicoleF33]

Yes, I had endometriosis removed when I had a hysterectomy. Three months after the hysterectomy is when I first developed FND.

[NicoleF33 in reply to Jellofabulous]

Can I ask you what type of endometriosis symptoms you had? It’s very horrible I know have you heard of the Dr Terry Wahls diet it’s to help with all autoimmune diseases

[Pink_Muse]

Hi,Nicole my neurologist gave me this fantastic cop out diagnosis of FND,aswell as having MS and fibro and reynards. Five years later after he has retired and my mobilety and hip pain, leg spasms and now further pins and needles and shsrp pains making it near impossible at times to support my other leg and my knee just freezes in walking movement and I collaps in pain. Guess what!!!I have now had another opinion of my scans including my spinal scans and they are saying that they are looking at nerve pain caused by collapsing discs in the back, degenerated or not I do'nt know yet but for five years I have been fighting for getting my psin under controll and getting fobbed off. Now they are talking of operating . So is FND actually nerves trapped that displayes diffrently in people or just a lable when they can't find out what is actually wrong. My hip pain is like walking on glass but my other leg I ca'nt put any pressure on or my leg locks. I'm now rattling with tablets to contoll the pain.Can't wait for the op🙂

[NicoleF33 in reply to Pink_Muse]

So happy you didn’t give up yes I totally agree I feel like diagnosis with fibromyalgia and FND is when drs don’t actually know what’s causing it breaks my heart sending love to you

[NicoleF33 in reply to NicoleF33]

Did you go to a different dr to get a second opinion about this so they could run more tests?

[210272]

Hi NicoleF33,

I have never understood why pelvic pain/Genito-Pelvic Pain/Penetration Disorder is in DSM or why pelvic pain is sometimes listed as 'medically unexplained symptoms'. I hope you can find someone who can help you with this and I would definitely ask for a second opinion.

[NicoleF33 in reply to 210272]

Thank you yes I’m gonna see a gynaecologist to see about endometriosis as mine started with pelvic pain.. then spread to different parts of my body.. which I feel like could be two different things going on