Totally in limbo..

[TinkerQuinn]

Morning beautifuls,

I am such a mess right now. Short back story.. Diagnosed endo, via laparoscopy, in 2016. Excised and ablated all they could see. Most was behind my womb and covering my pouch of douglass.. Plus my bowel had fused to my pelvic wall.

I had the coil fitted during surgery.. I've triededical menopause 3 times, doubled up on contraceptive pill and nothing controls my symptoms or bleeding. Over the last year and a half things became increasingly unbearable... I suffer with severe pelvic & hip pain, collar bone pain, swollen & tender breasts, immense pain under my ribs, tingling & cramping in my legs, brain fog, fatigue, major bowel and bladder issues, as well as symptoms that mimic those of MS (which neurology confirmed as being down to my nervous system being in overdrive from the endo.

I went for my second laparoscopy yesterday and there was no endo to be seen!!! None. I had a cyst on my left ovary, which they drained and removed.. But everything else looked in amazing condition.

The surgeon said now I will go back to see my consultant and they will also refer me to other pain specialists. She also pointed out that they can only see so much in the gynae area and that endo is so horrific it can grown anywhere... She also reiterated that they can't check inside any of the organs, bowel, bladder, etc..

I feel at a total loss. I also feel like I'm a little crazy. Surely this can't all be in my head. The pain is horrific and you can't manifest pain like this.

So I guess I'm asking if anyone has ideas of what it could be... 💛😭💛🎗️💛

[AllthatGlitters]

Hey my first thought when I read your story is have you ever had an MRI for adenomyosis? I have horrendous bleeding and pain, it’s so debilitating x

[TinkerQuinn in reply to AllthatGlitters]

Hey,Thank you for replying 😊 I had a pelvic MRI a couple of months back and it didn't show up and adenomyosis. That was my thought also. But it should 100% show on an MRI, shouldn't it?

I get a lot of really light pink bleeding. No cycle or pattern. It's always totally random.

I just honestly feel so lost at the moment. xx

[AllthatGlitters in reply to TinkerQuinn]

Hello yeah I believe adenomyosis is only shown on an MRI scan or when you have a hysterectomy. I have paid a couple of times for a private consultation which cost me £200, I done that due to the long waiting times and I was so desperate for answers too. Maybe that could be an option? You can then go back onto the NHS list for scans or surgery x

[Jmiller623]

I have bad CNS lupus. I smell strongly of MS or myasthenia gravis. Maybe it’s time for your GP to send off some autoimmune labs? I blamed all my pain on lupus. Come to find out I had endo. Road goes both ways. Sending hugs. ❤️xx

[TinkerQuinn in reply to Jmiller623]

Hi,Thank you for your reply 💕

I had looked into Lupus, but I don't really get any rashes. The worst I get is what looks like eczema on my hands.

I've never heard of myasthenia gravis.. I will look it up. I'm definitely going to be on their case and pushing for answers. No more sitting back and waiting for them. I was hoping this op would give me a period of lower pain levels, I actually can't cope with feeling the way I do everyday.

I hope you are okay. Hugs for you too 💓 xxx