help please :(

[Sara0102]

Hi there all so I have got suspected endometriosis and have a scan to confirm this on a few weeks but is anyone here who has been diagnosed help me with symptoms as it surely can’t be this bad every single day.. the symptoms I have are

pelvic pain even when not on periods

leg aches every day

bowel issues like mucus from bottom (sorry if tmi)

when I do have periods it lasts 2weeks

inner thighs aches a lot

bloating

fatigue

mood swings

9)bad spots on my face !

i do have the mirina coil in also which has helped somewhat but can this be endo or something more sinister

Ant advice would help thanks 🙏

xx

[Tangoandmax]

Hi!

Sorry to hear you’re going through it!

My symptoms mirror yours minus the spots. I’m currently taking Mercilon (combined pill) to stop ovulation. (Suggested the coil but couldn’t have it fitted due to pain).

8 years of scans showed nothing, until recently an ultrasound confirmed Adenomyosis then an MRI highlighted I likely have deep infiltrating endometriosis, multiple organ tethering and suspected endometrial plaque impacting my bowel wall.

Feel like I’m carrying a bowling ball in my pelvis. Absolutely exhausted no matter how much I sleep, thankfully my mood has improved slightly on this pill but previously I was known to throw full blown tantrums (at work) which I honestly could not contain.

My symptoms have absolutely progressively got worse. But I now suffer every day.

Is the scan an MRI/ultrasound? Either way, in my experience, just make sure the scan is either carried out/reported on by someone with endo experience or has a specialist interest in the disease. A general sonographer will look at ovaries and your uterus, but unless anything like a cyst can be seen they might say everything is fine. X

[Sara0102 in reply to Tangoandmax]

Hey hun so glad I’m not the only one … honestly I’m so bad today ConstAnt pelvic and leg pains

Also a lot of tummy pain.. so I am having a 1 hour long transvaginal ultrasound from the endo specialist himself

They do this just to look for endometriosis in more detail and apparently it’s more successful it’s a level 2 ultrasound or something and it lasts 60/90 mins and I hopefully should get a deffo diagnosis

I am exhausted… j can’t even go shopping or have a day out without leg pain and pelvic pain.. and lately I have been having mucus from my bottom aswell! Sorry if it’s tmi…

Even for me it’s every single day now and I really just want it to stop…. It’s under my belly button mainly lower pelvic and legs

[Duncansgh]

Hi Sara,

Just want to say I've been going through the exact same thing. Came on all of a sudden two months ago and has been so horrible since. I've had to change my diet, work from home more etc. I've got a scan next week and will let you know how that goes. It is just so horrible having to fight for oneself all the time. I totally feel your pain. Sorry that's not much help but think all we can do is support each other.

[Sara0102 in reply to Duncansgh]

Hey hun what’s ur symptoms and what scan do you have also do I het any viewer symptoms aswell..

[Sara0102 in reply to Duncansgh]

Hi hun did u have ur scan x

[Duncansgh]

I have been bloating all the time, urgency to pee, less regular bowl movements, tiredness, heart burn, constant feeling of a balloon in my ovaries. I have an ultrasound and transvaginal scan.

[Sara0102 in reply to Duncansgh]

Hopefully u get some answers x

[Cocoacupid]

hunny this was just like me . I think my coil ran out as have had it in for nearly five years . Hoping you get the diagnosis you need to validate your symptoms pain. Xx

[Sara0102 in reply to Cocoacupid]

What was ur symptoms and was u endo diagnosed ?

[Cocoacupid in reply to Sara0102]

I had severe endo that was in the outside of my bowel and endometriomas and an obliterated pouch of Douglas where my ovaries rectum bowel etc where all fused together by fibrous scar tissue which is the adhesions also I had a frozen pelvis . Even after my excision surgery three and a bit weeks ago I still have severe groin pain pelvic pain sciatic pain pain to my knees still a lot of neck pain is new and my ribs hurt a lot as well which is new and also I still have a lot of bad period pains but with out the bleeding. Xx

[Cocoacupid in reply to Cocoacupid]

I also still get a lot of Brest pain. Since my operation I have lost more weight so in total I have lost a stone and one pound xx

[Sara0102 in reply to Cocoacupid]

Oh dear u sound like u have had it all..

I really feel for u

I am really really bad this week iv annoy take it anymore

[Cocoacupid in reply to Sara0102]

Hun I was also extremely depressed when I was put in a chemical menopause I did struggle waiting for an operation now I have had just over three weeks ago I’m in just as much pain or more pain than I was before so I’m not totally convinced in my own mind that everything that was visible was taken as I could have it unseen but this is only in my experience as everyone is individual to how fast or quick they recover and all symptoms etc . I found my mental health did decline while waiting and I found I couldn’t really do my job to best ability as some days I would live in the toilet more often than not . Xxx

[ChinchillaChomik]

All symptoms that you describe could also be caused by pelvic congestion syndrome. I have similar symptoms and I was recently diagnosed by MRI. It can cause all sorts of symptoms including IBS...

[Lindle]

These symptoms are typical of rectovaginal disease including on the uterosacral ligaments which often causes referred pain along the sciatic nerve, so anywhere from the lower back, thigh and legs. As disease progresses pain is more likely to be constant. What did the scan report say? You could take a photo of the relevant parts and post here.

[Sara0102 in reply to Lindle]

I had a normal ultrasound on there it Wa showing a hydrosalpinx which is swollen felopian tube but that can only be caused by STI which iv never had and endometriosis

I jus want some answers I am driving myself insane by googling and self diagnosing … so on 28th I have another transvaginal ultrasound with the endo specialist and it lasts 60/90 mins and they only look for endo

I’m hoping that this scan will answer a lot of my questions

[Sara0102]

so today I have won’t up with pelvic pain and leg aches my pain is mainly on the left side