to be surprised to be diagnosed with pelvic inflammatory disease not endo?

[ScullyD]

For years my doctor has been going on ‘a working prognosis of endometriosis’ based on symptoms. I’m also part of a local endometriosis group which has been a great support.

anyway after a 2 year wait yesterday I got my laparascopy. They said no endo found in their limited view but pelvic inflammatory disease found - said impossible to see all of womb due to inflammation. An abscess and 5cm cyst was drained and annoyingly (but for my own good I believe) they removed my coil. The coil has allowed me to live functionally and stopped periods but they sent for testing. I am really worried about periods and symptoms coming back without it.

the doctor now says endo is closely linked with PID so I could still have it. Next step I should push for MRI and another lap once inflammation from antibiotics gone down. But who knows what the wait will be this time?

the woman in the ward next to me was calling her whole phonebook saying how happy she was they found and removed her endo. It made me cry honestly as I didn’t get the answers I hoped for.

A specialist has literally had a look around inside and made a diagnosis how would a MRI top that? Why question if that is accurate? Why not be happy as PID is a lot more treatable than endo? You have an answer and a way forward for treatment just not the one you thought.

Because the doctor said he isn’t convinced I don’t have endo as it can be linked to PID

He said the inflammation prevented him from seeing the womb fully and that to attempt it could’ve resulted in bowel perforation.

I’ve had serious problems with periods since I was 15 and I’m early 30s now. I don’t think my current PID can be the simple explanation to this.

I guess he is hoping the MRI will provide a full view? I don’t know as I always thought that came before a lap usually.

I don't really have any advice but I had both and there is lots of really interesting research that link endometriosis to infection and antibiotic therapy being successful treatment for endometriosis in future

See it as a positive that a surgeon has had a good look and made an assessment.
I got diagnosed with an endo and the surgeon said he didn’t remove any of it as he didn’t see the point - it only grows back! When I told him it might have given me a break from the pain, he looked at me like I was mad.
PID is really painful and if it’s been kicking around a while it will have caused the inflammation, and well done to the surgeon for not taking risks around the bowel.
Let the whole area calm down, follow the advice and see how you get on.
It can be a ‘relief’ to get an endo diagnosis but in reality there is not an awful lot that can be done apart from management anyway.
Hopefully, the treatment for the PID and the coil removal will help the area settle and you can go from there. Fingers crossed for you that it does.

Pelvic inflammatory disease comes from Chlamydia and if you had it, you’d know about it as you’d not only be in agony but you’d have a fever like none you’ve ever experienced in your entire existence.

Try not to be skewed by the woman in the bed saying her endo was removed. She's right to be happy ofc and tell all her friends, but you're making it sound like endo is some preferable, fixable thing which it sadly isn't for many women and as PP says, it can grow back. So if it's not endo, that should be a relief in some ways, even though it doesn't stop the symptoms and pain either way. I know you want answers and the one you have (so far) hasn't satisfied that need, but it's good that you're no longer in the dark and that there's some next steps in place.

I’m definitely confused about the supposed sti link. It wasn’t nentiobed by doc and to my knowledge I’ve never had an STI, had consistent testing between partners over the years.

A quick google says you can get PID without ever having an STI. It's not the most common cause but it's definitely possible so wouldn't assume chlamydia.

@ScullyD I developed PID twice - once was from a scratch inserting a tampon, once was from having a hysteroscopy. Not STI related either time.

This is utter bullshit stop scaring people with misinformation.

It is misinformation.
It can be a result of an STI. In my case it wasn’t.
I have had it twice, the last time was after a hysteroscopy and I was far more ill than the first time I had it.
Cleared up both times with antibiotics.
I have Endo as well, while the pain is similar there are no signs of infection like a wild temperature.

I got PID from having a mirena coil removed & new one put in. It took 8 months, 5 A&E visits, 4 GP appointments, 12 courses of oral antibiotics, and finally a 5 day hospital admission to get rid of it. It's left me with permanent nerve pain.

it was during covid, and I was told several times that normally they'd admit me, but they couldn't due to the lockdown. I ended up so ill they thought it was sepsis.

She very sorry you went through this. I have always refused the coil I know many women rate having one but I just couldn’t do it.
That sounds very traumatic.

That was the second issue I had with the coil, I'll never have one again.

the first problem was when one got stuck, I needed a hysteroscopy, the local anaesthetic didn't work. I was told afterwards that I could have had a general anaesthetic, it was agony. The doctor should have stopped and offered a general, I was screaming.

It was the following change 5 years later that gave me PID. As part of the treatment they removed it. When I'd recovered they offered to put another in, no thank you!

I did have 15 amazing period free years though, If it works it's amazing.

@CrazyCatLady13 I was really lucky to have a GA for that procedure. Again, so sorry.
Let’s hope OP makes progress and is on the mend.

It is caused by untreated STIs but it can also be caused by bacteria from the coil

If you are going to post on an obviously worried person's thread, at least get your facts right. It isnt always caused by an STI, there are other causes.

Or by normal vaginal bacteria travelling up to the reproductive organs by whatever means. As @rainbowunicorn says, there's no need to be so definitive, unless you're the world expert and know those are the only causes.

I wasn’t being definitive I was pointing out that’s it not just from STIs as stated by a PP

PID can also be caused by bacteria from the bowel (e coli) entering the uterus, as in my case. The sexual health nurse was adamant I must have had chlamydia but I knew I didn’t and my test came back clear.