Just got diagnosed with pelvic inflam... - Pelvic Pain Suppo...

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Just got diagnosed with pelvic inflammatory disease

DM14 profile image
DM14
31 Replies

Hi there... I have had gastro/gynae issue for years with many suspicions what it is but no true diagnosis.

I went into a&e Tuesday evening with agonising stomach/pelvic/back pain and fever. The gave me an antibiotic injection in my bum and 3 other antibiotics tables to take. I went and had a swab done yesterday to rule out STI infection (even though I’m certain it’s not)

Anyway what I wanted to know is can this be a chronic condition and could it be what I have always been struggling from or is it a one off infection?

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DM14
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31 Replies
Lurface profile image
Lurface

I’ve been dealing with pid now for 5 months. Never been accurately diagnosed, because I don’t have a STI . After 3 weeks of antibiotics I’m finally feeling better. From what I’ve read is that people with endometriosis have much worse symptoms when they get PID, so you definitely could have an underlying issue as well. Chronic pid tends to be from undiagnosed chlamydia infections: as this tends to have mild or absent symptoms. Or from inadequately treated pid infection. So if this is a big change: it’s unlikely chronic pid.

DM14 profile image
DM14 in reply to Lurface

Lurface thank you for you reply! Sorry to hear you are going through it but I am also glad I’m not alone!

What I was wondering is will this infection reoccurr if it is not caused by an STI?

I had a laparoscopy in a April because they thought I had endometriosis. That came back negative however my doctor think it was missed during surgery and is adamant I have it so am being referred back to gynae

Lurface profile image
Lurface in reply to DM14

From what I’ve read, infection can reoccur or become chronic from incomplete treatment or from a partner carrying something/not being treated and thus causing reinfection. For me no one believed I had PID because i didn’t have a STI. Which was very frustrating because I was in so much pain and I felt I was getting the brush off. I’m now feeling better and am scheduled for a diagnostic lap tomorrow: i think I have adhesions from the long infection time. I still have this tightness/pulling in my pelvis/ovaries. But I don’t know if it’s worth going through a lap for it. I’m sorry you have no answers about you possible endo. Finding the right dr who listens is really half the battle.

Konagirl60 profile image
Konagirl60 in reply to Lurface

Hello. How was the laparoscopy? Did they find any endometriosis?

My gynaecologist found endometriosis near a ureter....she was through.

Let us know how you are. Good luck.

Lurface profile image
Lurface in reply to Konagirl60

Thank you for following up! I ended up postponing my lap. Of course when this lap is finally happening, the symptoms start to get mild... which messed with my head. I started to feel like I have one shot at this lap: and if they find nothing: I have no where to go, no answers. So I talked to my gyn and decided to follow up in a month: If i improve: great and if not. I’ll get a lap. I have a 1 and 3 yr old at home with minimal help, so recovery from a lap was also weighing on my decision. I’m taking supplements trying to heal myself. I alternate between hope and despair. Trying to stay positive.

Konagirl60 profile image
Konagirl60 in reply to Lurface

You made a wise decision. Let Christmas pass and welcome the new year. I hope symptoms do subside. Good luck. Happy Christmas.

introuble profile image
introuble in reply to Lurface

Yes please update us!

Take care

DM14 profile image
DM14 in reply to introuble

introuble thank you for getting in touch.

I was given azithromycin, ceftriaxone, doxycycline and the a final beginning with c (but I’ve forgotten) x

introuble profile image
introuble in reply to DM14

Dont be sad! We are here for you! Just keep in touch ya!!

introuble profile image
introuble in reply to DM14

Are you working or on leave?

Rate your pain 1-10!

Where’s your pain? Lower abdominal?

When is your next Dr visit?

Hugsxxx & kisses

DM14 profile image
DM14 in reply to introuble

I have flare ups of pain.

I’m always in discomfort but when I get the pain it’s a 6/7

I have had problems with my abdo/pelvis for 13 years and never been diagnosed with anything.

I am under a gynae and gastro consultant butbon the waiting list to see both.

I went back to do a post grad in uni in September but had to leave due to my ill health.

I just wondered if all along my issues could have been PID? Xx

introuble profile image
introuble in reply to DM14

sorry to hear you’re still suffering for long..

You did had laparoscopy right and they didn’t catch any endo or PID? Negative surgery?

Hugsx

DM14 profile image
DM14 in reply to introuble

Yes I had a laparoscopy in April. And they said they saw no signs of Endo. At that time PID hadnt even been questioned so I don’t think they looked for it as such.

And then the PID was identified in a&e in December x

introuble profile image
introuble in reply to DM14

How did they diagnosed you with PID in Dec?

introuble profile image
introuble in reply to DM14

What did they found?

DM14 profile image
DM14 in reply to introuble

I had extreme pain when being examined, my inflammation marker was raised extremely high And I had blood in my urine so he said he is adiment it was PID x

introuble profile image
introuble in reply to DM14

Oh my that’s what my Dr told me, if I’m in pain when Dr examined than probably i have PID, but I don’t have any trouble or pain when Dr examined me and no discharge or fever..

Hopefully you will be better after you finish your antibiotics.. finger crossed and praying for you

introuble profile image
introuble in reply to DM14

You not alone ok!!

Hugx

introuble profile image
introuble in reply to DM14

I’m on antibiotics too.. pain decreased . Dr said I didn’t have PID diagnosed by ultrasound examination but my lower abdomen still in pain 24/7

Maybe laparoscopy next step

DM14 profile image
DM14 in reply to introuble

So they said yours is not PID because you had no pain when being examined???

Yeh I am in pain every day pretty much. It flares up and down and I have had no answers as to why.

Are you having the lap to look for PID or for Endo or just exploratory?xx

introuble profile image
introuble in reply to DM14

Hi,

Yes, no pain during tranvaginal ultrasound and no pain when they push my abdomen... she said if i have PID, it’s gonna be painful when they push my abdomen etc...

I went to see 2 docs and talk about my concern about PID.. but they laugh and said “I don’t think you have PID”

Yes i might need the laparoscopy , but for now I’m scared and no strength to proceed it cuz I’m all alone no support..

My pain below my abdomen, hurt when sitting for long time and when i laying down to sleep...

Just want my life back :(

too much to handle

*

I just did hystreocopy 2 weeks ago to remove polyps and colposcopy... and now I’m having discharged yellowish and brownish (sorry TMI) , my Dr said i will have discharge for 3 weeks.. 🤷🏼‍♀️

Hugs

DM14 profile image
DM14 in reply to introuble

Oh gosh!! It’s so awful that you are not being listened too :(

I got told during my recent smear test that I have polyps which need to be removed so they are leaving that for whenever I eventually see the gynae xx

introuble profile image
introuble in reply to DM14

Not sure about endo, endo and PID had similar symptoms right... mmm

I’m more to PID because my pain appears after i had D&C in 2017..

Wreaking my life 😭

Nikki1974 profile image
Nikki1974 in reply to DM14

Im dealing with the same thing ladies. Initially went to a & e 3 years ago with excrutiating pelvic and back pain, was given antibiotics for pid and sent away and pain eased but never fully went away. Im in pain every day, lots of discharge, burning and stinging down below but every few months it flares up and becomes excrutiating again and my stomach swells up so im given more antibiotics. I had a lap done and they found copious amounts of fluid in my pelvis and some small adhesions which they thought was from all the infections and again just sent on my way with more antibiotics but the cycle continues. They find absolutely nothing on swabs, no bacteria but i have so much discharge but they literally have no idea whats going on and keep saying i couldnt have PID for this length of time. Not once have i been admitted for iv antibiotics. They are now putting me through artificial menopause to see if its gynae related but its making things worse as my ph levels are completely off, very frustrating. I have a prolapse which i think is contributing but again im told no, seems like no one wants to investigate further. Keep pushing the gynae and your GP until you get some answers, im not giving up until i find mine

DM14 profile image
DM14 in reply to Nikki1974

How are you managing with working/studying whatever you may be doing?

That part of my life feels constantly on pause x

Nikki1974 profile image
Nikki1974 in reply to DM14

Its a real struggle but im a working mum with 2 children so i have to keep going but it is completely time consuming mentally and physically trying to deal with the pain and find out whats wrong. Ive had tramadol for the pain which doesnt come close to helping but within a day of taking metronidazole antibiotic all my symptoms subside including my stomach which makes me look pregnant when it flares goes completely flat after that particular antibiotic. Ive tried and tested through 3 years, have taken countless photos to show the difference in my stomach and kept a pain diary but the gynae is completely lost and will not listen to the facts staring him in the face. Theres something being missed on swabs somewhere, and what is causing it? He just says yours swabs are clear so it cant be PID even though the laparoscopy showed differently! I wont give up fighting for an answer as i know there are several of us dealing with this issue, something is being missed

costagran profile image
costagran in reply to introuble

i've got the sort of pain you ladies are taking about.

When it started i got heartburn, my poop went a clay colour and pencil thin. my pipi was clear like water and sometimes couldnt go and other times going frequently.. I got a fever and lost 12kls in weight.

My face was grey and i felt dreadful.

I had every test imagineable and still no diagnosis 7 years later.

From time to time i get a swab test which is always a bv gardarnella.

So after a week on antibiotics my pain subsides for a few days then returns.

The epicentre is where i think my left ovary is.,but i do also get gastro pain and similar to bad period pain.

but i am well past menopause.

Recently i got to see a female gynno who was a breath of fresh air and took some interest.

I am waiting for my next appointment which will reveal the results of an mri she sent me for.

we do our own research and get our own theories but the medics just fob off or say its ibs.

If i dont get positive answers this time, I think I will just have to live with it.

Nikki1974 profile image
Nikki1974 in reply to costagran

I could have written your post! So glad youve found a gynae that is treating you as an individual and with an interest in helping you, good luck, i hope you get some answers soon x

MissyLucy78 profile image
MissyLucy78

Yes it can be a chronic infection, or more likely one that reoccurs. If it’s not STI related or when you have milder symptoms that rumble on for a while doctors can fail to make the diagnosis. That’s what happened to me. I’ve had it three times now, never had an STI. I think I got mine from various procedures I had done, such as hysteroscopy and biopsy. I would also say that the symptoms you’ve all described are pretty much the same as mine, my pain level is also usually 6-7 when it’s bad and always some discomfort, lower left abdominal pain the worst but pain all around my pelvis, painful urination, heavy painful periods, painful ovulation, smelly discharge, bleeding in between periods. I don’t have severe pain that would send me to A&E or a fever.

Did your period get lighter after treatment for PID?

Mohammed1985 profile image
Mohammed1985

pudendalhope.info/node/2

Please check syptoms section on hrere u wil find answers

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