Anyone with a similar situation?

[Heloo85]

Long story short:-

Diagnosed non-STI PID.

6 months of antibiotics on/off. Every-time antibiotics stopped, symptoms started back up.

Sent for a lap at a private hospital. Opened/shut, diagnosed as Stage 4, told I had to go BSGE for surgery, Zoladex started at post-op.

Went to BSGE, fobbed off for months like nothing was happening. Eventually, after the 18 week treatment time had passed it was agreed I needed surgery.

I had ‘intermediate’ surgery that lead to major surgery.

I was kept on 3 monthly consultations bounced between pill and Zoladex, although almost got another lap in 2020, which never happened. I did however get pain clinic, who gave me leg lifts to cure my pain 🤨.

Almost died to be fobbed off again! Eventually they agreed a hysterectomy. I am expected to wait at least 2 years.

The reason I ask is because I got my notes.

1) even though I was diagnosed Stage 4 I have a letter between my BSGE consultant and colorectal surgeon saying that they would excise endometriosis ‘IF’ it’s diagnosed.

2) I didn’t receive any surgical notes bar anaesthetists report which show I had severe cardiac complications.

3) my endometriosis was active on every ultrasound scan, post surgery bar 2019 (unsurprising really, seeing as that’s the year I almost died from Co poisoning! Forget Endo being starved off, I almost was)

4) I have been told I’m ‘complex’ without any explanation! So ‘complex’ I was left 5 years with active disease, but then not so complex that they was going to give me another lap, but then decided against, but then the MDT couldn’t even agree a plan(?). So who f’ing knows what’s going on!

Anyone else had surgery then remained on follow up with active disease for so long?

[Hidden]

Hi,i am sorry for your health problems ,sadly i cant help u,hpe somebody will👍 i suffer myself too.All i can say be careful with antibiotics! 6 months on/off😱Your body needs to restore after that.... ,seriously... and also too many antibiotics then your body stop reacting to them .So many great documentarys online about antibiotics.I have been there,but never ever 4 that long...Be careful please.I was using probiotics for many months from health store after too many antibiotics in the past.Wish u all the best,take care🙂

[Heloo85 in reply to Hidden]

Hi

I do take your point about antibiotics, but it’s a bit late for that! I’ve had more antibiotics in my life than all the general population put together! Funny enough, before my Endo was diagnosed, I would get a chest infection during every period! They assumed my period was knocking my immune system! I’ve also had sepsis, so was barraged with antibiotics! I got an infection from a tick! I have had many UTIs, turned out I needed my kidneys stented!.. Likely due to Endometriosis 🤣. I have a long history of antibiotic use! Infections starting in hands after my sun allergy has kicked off.

I’m like a walking antibiotic junky! Even at my lap I had an infection! 🤣!

I don’t think there’s anyone other than HIV patients as susceptible to infections than me! I’m sure I have an undiagnosed immune deficiency disorder. Even more so now I’m 37 and showing signs of systemic disease.

I just don’t know anyone in the same position as me! First my surgery was going to take a year! Now it’s at least 2 years, after sepsis, due to complicated endometriosis! I have no idea why I’ve been on 3 monthly consultations for 5 years, with active disease, if their plan was to do nothing! It’s bizarre! Just trying to find someone else that has a similar story! Xx

[Hidden in reply to Heloo85]

i am really sorry,u suffer a lot,not fair!I am sorry i couldnt help u,wish u all the best👏