endo advise

[Ballet22]

I sometimes get slight pain in my thighs then a warm sensation in both thighs does anyone else get this

Also I find when I’m standing for a long period of time eg at a festival my lower back hurts and I get a dull cramping in my pelvis

[Tangoandmax]

Hi,

I have DIE, and endo on my uterosacrel ligaments which causes pain down my thighs into my knees.

I have pain mostly all of the time in the lower back but yes, when standing for significant time the lower back pain increases.

[Ballet22 in reply to Tangoandmax]

oh bless you that sounds horrible yeah don’t no why it effects our backs it’s rubbish I have mild endo and it’s blocked my right Fallopian tube

[Tangoandmax in reply to Ballet22]

It’s not the best! I have one ovary stuck between my uterus and bowel which are now tethered together.

Is your other tube ok? I’ve no clue what my current fertility looks like, hoping my some miracle that damage can be reversed by surgery when I eventually get through the waiting list!

Bloody awful all of it x

[Ballet22 in reply to Tangoandmax]

oh gosh that’s horrible I’m sorry to hear that yes it is thank goodness well I hope nothing has changed as I had the key while surgery and diagnosis back in 2021

Hope everything goes well for you x

[Clare1993 in reply to Ballet22]

Hiya. Sorry to jump on someone else's post, i am struggling with a diagnosis but your leg pain sounds exactly like what ive been getting, i have a large cyst with dermoids on my left ovary and one inside my right ovary... my doctor keeps trying to get me to have physio but this has only been since i had an ectopic pregnancy in October which then they discovered the cysts too.. i find it hard to believe they aren't linked but im being fobbed off left right and centre x

[Ballet22 in reply to Clare1993]

Oh bless you sounds horrible and sorry to hear about the ectopic pregnancy yeah I don’t get it all the time just know and again don’t no what the warmness is all about very wired

Yeah the doctors arnt terribly helpfully when it comes to endometriosis we need a specialist in endometriosis x

[Clare1993 in reply to Ballet22]

Thank you, it was an unplanned pregnancy and sadly the only way of dealing with it is just not thr right time. Yes i totally agree they need specialists as everyone i have seen is so unhelpful with no information. In fact the only person i have actually seen is my gp or a trainee gp at the hospital and he was unable to answer any questions i had! But i believe my consultants secretary is due back im a couple of days so im going to chase them up as i have had no contact and my nhs app says treatment is supposed to be received by end of march and we're fast approaching that! X

[Ballet22 in reply to Clare1993]

Oh bless you

Yeah we really do need more specialist nurses doctors that know more knowledge or specialise in endometriosis this is why I love this group talking to people who get what your feeling and supporting each other x

[MangoStickyRice]

I get these. Sometimes hot sensations, sometimes cold or sometimes I can’t tell if it’s hot or cold (feels menthol/minty)

[Ballet22 in reply to MangoStickyRice]

Not sure why it does it but it’s not just me x

[asread]

I told my consultant about similar pains which I get mostly on my period and he said it’s nothing to do with endo or adeo!

I have aromatherapy massages which really help with the leg pain - she used all natural oils and makes me a roller ball and cream to use which combined with heat mat etc at home really helps

[Always_hope_andpray in reply to asread]

Hi, did your consultant say what the pain could be?

[Lornalost89]

Hi. I get exactly the same. I have been referred to a specialist centre after MRI shows suspected DIE rectosigmoid showing my cervix and bowl are joined. I found it strange the fact its my hips/back/legs (only to my knees) a wonderful dr i seen last yr was an amazing lady and she instantly said from my symptoms she believed its due to bowel endometriosis and that's exactly what my MRI seems to be showing xxx

[MangoStickyRice in reply to Lornalost89]

That's interesting that yours stops at your knees. Mine seems to get stuck at joints (knees, occasionally ankles, shoulders, elbows, wrists. My MRI picked up adeno but no signs of DIE. Having a laparoscopy with an Endo Specialist in May so I'm hoping that helps diagnose the cause.

[Lornalost89 in reply to MangoStickyRice]

I've had issues with Mt wrist lately but I've never actually thought it's was linked to joints? I honestly didn't link my leg pain to it until a Dr mentioned it. As my leg pain can have me up all night around my menstrual cycle x

[Menopausal7 in reply to Lornalost89]

Mine also stops at my knees goes down front of my thighs. I was admitted to hospital for a week in September last year with severe PID infection, the gynae I saw there said the pains down my legs were likely endo, I’ve had an MRi recently which confirmed deep infiltrating endo throughout pelvic cavity an also in my sigmoid colon and rectum, I used to only get the pain during periods but it’s now there on and off even without bleeding. I’ve been referred to an endo specialist who will be doing total hysterectomy and there will be a bowel surgeon present as they want to excise endo same time. (Also have ovarian cysts, inflamed fallopian tubes ,bulky uterus and large fibroid with fibroids behind it)

[Ballet22 in reply to Menopausal7]

Oh gosh bless you I’m so sorry you have to go though that x

[SeedsandNuts]

I can relate to that!! Sometimes I ask myself if I'm imagining my symptoms. I get this nagging sensation from lower left back down left leg and sort of warm sensation on my feet. It is almost difficult to tell which are endo symptoms as I'm also perimenopausal. Standing, walking or sitting for long is a pain!!! With lower back pain, pelvic pain that comes and goes.

[Ballet22 in reply to SeedsandNuts]

I’m so glad I’m not the only one yeah it feels if tho your imaging it I agree I searched it and it said that endometriosis can irritate the obturator nerve in your thigh causing the warm sensation we get sometimes