Endo and severe lower back pain

Hi all. It's been years since I posted. I've been really struggling with endo lately so I just really wanted some support and to know I'm not alone in this, because at the moment I'm at the end of my tether.

I had a lap back in 09, they found endo over my left ovary and in my pouch of Douglas. After the lap I didn't have many issues, things were fairly normal for awhile.

Cut to the last two years... Argh. It's quite obviously back.

Have been having the "normal" pains that I generally associate with my endo, but I have also been experiencing terrible sciatic pain along with extreme lower back pain. The combination of both leaves me with a weak leg and mostly unable to walk without limping. Unable to sit or stand for long periods of time. I get some relief if I lay down but my back and left leg still aches.

I'm just feeling really over it. I am assuming it's the endo causing the pain, I don't think I have done anything to hurt my back. Plus it seems to come and go.

I have a referral to a gyno and I have been getting some relief in the meantime with acupuncture, shiatsu and painkillers. The problem I'm seeing is that I am unable to afford private surgery, and I don't know how to go about being a public patient with it. I'm worried I will be stuck with a bad treatment plan or something if I have to just see whoever is available.


So... Some questions for your gorgeous people:

Does anyone else experience this kind of back/leg pain with endo?

Has anyone gone public, how was it and how did you get the ball rolling?

How on earth do you explain a chronic issue to employers? I feel like a flake... I'll be fine one day and unable to move the next.

I have long standing mental health issues (bipolar, ocd, PTSD etc) I've found some doctors assume my pain is in my head, tell me to go to my psych when I am in tears in their office asking for help... They assume it's just me being a hysterical woman with a bung brain. Have any others dealt with this?

I just need a hearing ear because at the moment I feel like maybe this is all psychosomatic, ha! Thankfully I've got a great partner and he is beautifully understanding and caring so at least I've got him on my side but I need to hear From people that experience this.

Cheers,

Ever-in-pain Sibbie

Hi Sibbie, just wanted to reply re going public and the back pain/doctors saying it's all in your head.

I haven't been diagnosed with endo yet, I'm having my exploratory lap on March 14th (I'm excited that it's finally happening and so scared of what will be found at the same time!). I do know that my back pain (I have a chronic back issue as well) gets worse in the lead up to my period and during my period, it's only the last few months that I've really noticed the correlation between worsening back pain/pelvic pain and my period getting ready to start.

And yes I've dealt with doctors telling me it is all in my head as well! It took me 5 years to get a diagnosis for my lower back pain, still waiting to find out what is causing my other issues (random hand/arm tremors on the left side of my body, and now recently developed unexplained high BP with no known cause, the nurse yesterday at my pre op appointment tried to tell me it was just stress over the upcoming surgery but my BP has been slowly rising since June/July last year).

Going public is pretty easy - since you've already got the diagnosis all you have to do is see your GP for a referral to a gynecologist in the public system, guessing a surgical one would be best (that's who will be doing my surgery), so you can go on the waiting list for another lap and lasering of any endo that is found (that's how my surgical gyn explained the procedure for if endo is found anyway, sorry if it's not very explanatory - you probably know much more about it than I do! I'm still learning about the treatments).

It can on average take up to 6 months to get in to see a gyn on the public system, though you'd probably get in quicker than that, and category 1 for surgery is up to 30 days before you get the surgery date, category 2 is up to 90 days (I'm category 2, but had to wait longer for the surgery date as the surgical gyn doing my surgery is a private gyn who also takes on some public patients and he went on holiday over Christmas/New Year for a month so everything got delayed), category 3 is usually up to 1 year before surgery is done.

Hope that helps!

Thanks so much for the reply! I should update.

I saw a lovely doctor at the women's health clinic, she referred me to a physio for my pelvic floor. I've been seeing the physio and it's wonderful, I finally have a diagnosis of vulvadynia and vaginismus, caused by the chronic pain from the endo. Working hard with dilators and manual therapy to release the pelvic floor muscle and have less troubles. It's helping but I think I won't make real progress until I have a lap to see what's going on. I even got a chronic health plan so the physio is covered by Medicare.

I also have a referral to the public gyno, I'm seeing him next month and I'm hoping I can go on the waiting list for surgery to sort things out. The chronic pain has impacted my bipolar and I've had a depressive episode (major enough to be hospitalized) so I'm hoping a letter from my psychiatrist will assist in hopefully not having to wait forever.

It's all looking positive at the moment but all thanks to the beautiful female doctor at the women's health clinic. She was so understanding and I finally felt like I was truly heard by a doctor, just wonderful.

The back pain is still pretty terrible but the physio will do some work on it and I am also finding cupping and acupuncture is helping.