Endometriosis vs Sacroiliitis

[Health_conscious]

Hello,

I have been going through health challenges for the last year and it has been a nightmare!! Doctors have not come to a conclusion and it would be good to know if someone has gone through something similar.

I’ve been suffering from pain in my pelvic region/lower pain, nausea, back stiffness, loss of appetite. Initially they found microscopic blood in my urine and put me on treatment for uti but that didn’t help (which makes sense as the cultures came back normal). I’ve had many ultrasound and transvaginal scans and they could not find anything significant except reduced movement in my left ovary.

The gynaecologist was not convinced I had endometriosis based on my symptoms and suggested I need MSK to look at my sacroiliac joints. I’m currently doing physical therapy which is helping but I noticed my back/pelvic pain gets worse when I have a cold/flu, period is about to come, when I eat sugar (eg. raisins, belvita etc) or when constipated. I don’t think these are common symptoms of Sacroilitis. My back pain can be dull or sharp like electric pain. My physiotherapist refuses to do an MRI and I think I’m being treated blindly.

Sorry for the long message but it would be great to hear if anyone experienced this.

Thanks!

[Tangoandmax]

Hi!

Just wanting to comment as my symptoms are pretty similar to yours and I have endo and Adeno (now lap confirmed - currently recovering). It’s taken eight years to get to this point. I had numerous ultrasounds over the years, nothing was ever found. It’s only when symptoms severely deteriorated I was taken seriously and offered an MRI by my local hospital gyne - it then became apparent my uterus was stuck to my bowel and ovary to my pelvic wall. Amongst other things.

The reduced movement should absolutely be investigated further by a gyne team. Those carrying out ultrasound scans are not trained to locate endo, you need someone with a special interest or an actual specialist.

My pain was mostly lower back, pain down legs along with sporadic pelvic pain. I also would be tested for a UTI which would show blood but no infection. During my lap they performed a bilateral ureterolysis which is removal of scar tissue around the urinary tract to stop blockages. They also found a lot of endo on my pelvic wall/ligaments which caused the lower back pain.

Keep pushing for gyne investigations/ or a diagnostic lap, you’ve really got to fight them every step of the way of this. It’s hell!

Wishing you the best of luck xx

[Ayla7 in reply to Tangoandmax]

So are u taking any treatment for endometriosis

[Tangoandmax in reply to Ayla7]

I’ve just had excision and will remain on the contraceptive pill running back to back to stop periods/and hopefully hider any regrowth. I still don’t have children so I’d like to be able to stop treatment as and when I wish to to be able to try when ready.

[BloomingMarvellous]

Yup ! Normal pattern for me. Insist on referral for lap and endo specialist. Download and use the symptoms tracker from Endo Uk . Print them copies of this. You will need an MRI radiographer who specifically specialises in reading endo , adeno and DIE in endo rather than a generalist. They aren’t common so do your homework.

If you can’t get either onto a MRI or Endo specialist because they still refuse to acknowledge they are barking up a blind alley then if you can afford go private. It’s worth DMing Lindle on here to find out both NHS and private specialists in your area.

[Cambk]

Hello,

Still on my journey myself, I was diagnosed after pushing really hard for a lap with local gynaecologist and had to push even harder to get my results, I’m now waiting an a referral to Liverpool for specialist care.

My main symptoms are sharp pain and couldn’t sit properly during and around a period, pain during sex before/after a period.

I have also suffered for as long as I can remember with lower back pain- turns out it’s SI pain. Whether it’s connected to the endo who knows but seems a coincidence not to be.

Hope you get some answers and please keep pushing for a lap, I would have never got mine if I didn’t, it seems a common theme unfortunately xx

[Gizmo8282]

hi , sorry to hear about your pain & symptoms, I had many ultrasounds & transvaginal scans & nothing showed up I ended up paying private as I’m still on the waiting list for the nhs lost my referrals 3 times it’s been going on 10 years, anyway soon as I had the mri is showed I had deep infillerating endometriosis & adenomyosis that had widespread as I’ve been left so long, so I would definitely push for mri xxx

[Health_conscious]

Thanks everyone for sharing your experiences. I will definitely push for this. It’s quite scary as I never grew up with menstrual problems. It’s quite concerning that when I turned 29 last year the symptoms came on so suddenly and it’s quite debilitating…I don’t go out much anymore and I can’t do basic things like carrying shopping

I hope I can get to the bottom of it soon!!