PID: Hoping someone will be able to answer... - Endometriosis UK

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PID

Lover124
Lover124

Hoping someone will be able to answer this?

So I’ve Recently just got over taking antibiotics for PID, only the pain I’m in hasn’t really been much better. Although it has changed and now instead of a sharp pain, it feels like a really bad burning pain and like there’s fluid in my stomach area. All the pain is in my right ovary area and now it just feels like there’s fluid moving around.

Anyone know what it could be? My doctors are been for then from helpful and after been on strong pain killers for weeks they have now told me to take paracetamol and there’s nothing else they can do until I can be referred to Gynaecology. My fear is though that the infection hasn’t all gone 🤦🏻‍♀️

28 Replies
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I would ask for stronger pain killers and maybe ask for another cause of antibiotics

Lover124
Lover124
in reply to Emma-endo

I’ve had 3 weeks of Antibiotics already. I have asked for some stronger pain relief but for some reason there refusing to give me anything else, until I see Gyni again 🤦🏻‍♀️

Hi, i am so sorry to hear you are not doing so well. I had a misdiagnosis of pid, and it was actually endometriosis, do you mind me asking how they diagnosed you? X

Lover124
Lover124
in reply to 079me

Hi

I had the coil fitted about a month and a half ago and a week later my pains where really bad. After going back and forth to the doctors where originally she said it was an Ovarian cyst she did some swabs and everything came back clear apart from the one for PID. Which she said was a possibility that the coil caused it, as it can do sometimes x

079me
079me
in reply to Lover124

When they thought i had it, i was on very strong antobiotics, two lots together for two weeks straight. I wonder if you need a different antibiotic maybe? I hope you are able to rest and recover at this difficult time and can get well soon xx

Lover124
Lover124
in reply to 079me

Yup that’s what I had two lots of strong antibiotics together for two weeks straight then a week of a different set of antibiotics. They don’t wanna put me on more antibiotics but then they also don’t wanna do anything else 🤦🏻‍♀️. It’s just so frustrating been in so much pain and not been able to do anything about it xx

079me
079me
in reply to Lover124

Keep persisting with the doctors and push for the gyni appointment! I agree with mazzy93, sounds like scan is needed x

Lover124
Lover124
in reply to 079me

I’ve spoke to them so much and they do agree that I need a scan and stuff but because of the current situation it not urgent enough for me to have one during the pandemic. I got told by Gp that the only way they would scan me is if I got rushed into hospital x

079me
079me
in reply to Lover124

Do you have any health insurance you can use? Does it help to go for walks and stuff? Other than that, all i can suggest is hot water bottle, plenty of water, try and stay positive, i know it is hard!

Are you spiking temperatures? Maybe you need to go in for a scan- if your antibiotics aren’t working then maybe see if you need to go to hospital for intravenous. I was recently discharged from needing intravenous.

Lover124
Lover124
in reply to Mazzy93

Every so often my temperature does spike. I’ve been to a&e twice and sent home without nothing. I think I’ll definitely be ringing my Gp back in the morning. Did you feel like the burning sensation pain??

Winter4044
Winter4044
in reply to Lover124

This happened to me went to A&E twice and was sent back home with a prescription for Buscopan. Then collapsed at home couple days later due to serve pain, went back to A&E for a third time was told the same thing so then I demanded a second opinion from their on call Gynae !! Ended up being admitted for 24HR monitoring and IV therapy after the Gynae doctor there scanned and gave me a physical examination - turns out I had a really bad infection from where my IUD embedded itself into the wall of my uterus !! Now been sent home with a months worth of antibiotics to continue to clear the infection and placed on a waiting list for surgery to repair damage and removal. You need to go back to A&E and demand a second opinion from a Gynae doctor there not general medicine doctor in A&E.

Lover124
Lover124
in reply to Winter4044

When I was in hospital last weekend Gynae refused to see me. The only reason I had gone is because the pain had got worse and I was randomly bleeding. When I got there and waited 2 hours in absolute Agony by the time I even spoke to a nurse she said that Gynae had said they don’t want to see me because I had stopped bleeding even though the pain was absolutely ridiculous and the fact that I was randomly bleeding anyway was enough for me to be worried.

Winter4044
Winter4044
in reply to Lover124

That’s bloody ridiculous they can’t refuse to see you if your in absolutely agony even if your bleeding had stopped !! They saw me and I wasn’t even bleeding like you were, so for the nurse to tell you they have no reason to see you just because your no longer bleeding is really bad and they shouldn’t have said that. They should have investigated further and not just keep sending you home.

If they hadn’t seen me and left my infection how it was over time I could have developed sepsis !! If I was you I would go make a complaint to the PALs Team at the hospital.

Lover124
Lover124
in reply to Winter4044

Honestly I was gobsmacked. It was like 3am in the morning and I got sent home. I was in tears with how much pain I was in. I just feel like because of the current pandemic they don’t wanna do anything. But it’s affecting my life and work now it’s just not right at all. I know my body and something feels wrong x

Winter4044
Winter4044
in reply to Lover124

This is true, they’re not doing much due to pandemic. All surgeries etc have been put on hold and are only doing them if it’s absolutely necessary. Yeah I don’t doubt it is affecting your life !! I hope you manage to get something sorted out. Maybe write a letter to your GP and ask for them to refer you for an emergency Scan. Xx

Hi lovely, so sorry to hear you're in pain! Definitely be persistent with the gynae, I was misdiagnosed with PID before I was diagnosed with endo and endured two courses of awful antibiotics in the meantime, so if you're still in pain it is definitely worth having those discussions :)

I'm shocked the GP is not giving you more antibiotics at least! When I had a tubo-ovarian abscess (as a result of PID) I was on oral antibiotics for about 4 months in total, they kept scanning me and repeating the prescription until they could see no signs of infection AND the pain had gone . If you are despairing of the NHS route, and you can afford it, it's possible to get scans done privately- they are still working in the pandemic. Ultrasound Direct have clinics all over the country and will charge £135 for a full pelvic scan.

Lover124
Lover124
in reply to Boxclever1

When I spoke to him on Friday he said that I’d had 3 weeks worth on antibiotics so he doesn’t see why I need more 🤦🏻‍♀️

Boxclever1
Boxclever1
in reply to Lover124

I'm concerned that your pain is in the ovary area. I'm not a doctor but I did loads of research on my abscess, and it is thought that tubo-ovarian abscesses occur when PID infection gets into the fallopian tube and ovary. If you do have an abscess, you need urgent medical treatment. The doctor is assuming you have a 'simple' case of PID which 'should' respond to 3 weeks' antibiotics but you are still in pain, so clearly hasn't responded!

You need to be your own advocate, if necessary becoming 'that patient'. Speak to (a different?) GP, highlight the pain is focussed on the ovary, say you are worried about the possibility of tubo-ovarian abscess (its hardly unusual: 15-35% of women with confirmed PID get a tubo-ovarian abscess - see link here obgyn.onlinelibrary.wiley.c...) and if you don't feel you are getting the response you need, pay for a private scan - that's how mine was diagnosed (my doctor was great, and referred me for scan through NHS but the wait was 2-3 weeks, so I went private (and was immediately sent to A&E as an emergency)). Better safe than sorry.

Also just to add, my pain was nowhere near as bad as yours (I described it as how you felt as a kid after you'd been kicked in the stomach!) and it was totally bearable with the occasional dose of paracetamol. I only suspected it was infection as I had frequent bouts of fever (clammy, nausea, lightheadedness, uncontrollable shaking) in middle of night. I am so shocked they are not taking you seriously at GP and at A&E, with pain that severe x

Lover124
Lover124
in reply to Boxclever1

I’ve just spoke to my GP and she’s given me more Tramadol and told me there’s nothing more they can do until after the pandemic and then they can refer me for an ultrasound. She said if I even find tramadol isn’t helping then I need to go to a&e. She then said she doesn’t think she needs to refer me to a&e yet, even though I told her the last of the tramadol that I took this morning hasn’t worked and I’m currently in loads of pain while trying to work x

Lover124
Lover124
in reply to Boxclever1

I also told her that it feels like there’s fluid there and a really sharp burning, stabbing pain. But she said that it’s nothing to worry about 🤦🏻‍♀️

Seeing post like these make me so angry with the health system. I had a similar kind of situation where I was getting very severe pains on the right side of my pelvis. Had an ultrasound which showed a 5cm endometriomic cyst on my right ovary and told it was too small to do anything with even though it has been causing me agony every day.

Went to A&E three times as pain so bad only to be sent away the 1st two times with nothing and then 3rd time they admitted me as I could barely stand. Now on tramadol and morphine until NHS is up and running again so I can see my endo consultant.

I think it is terrible that they wont do anything to find out what is causing pain etc but then wont also do anything to help symptoms. If they aren't going to treat it then they should definitely give you better pain relief or how else are you meant to function?!

Hope you get things sorted soon and your pain improves ASAP. X

Lover124
Lover124
in reply to fdennis07

Thank you was prescribed some more tramadol and told if that doesn’t take the edge off it then go straight to a&e as there’s a possibility that the infection hasn’t all gone but they won’t be able to tell until I’m scanned which could take months 🤦🏻‍♀️

There are only certain types of antibiotics that will help with the PID. Id ask for another course of antibiotics as PID is not something to play around with. I needed 2 courses and the second one is where i felt the relief. I also have severe endo so that did play a role in needing another course of anti due to severe inflammation. If you can try to add ibuprofen with your normal pain med. It helps with inflammation. Only thing that helps me even slightly honestly is 1000 mg of ibu. I hope you feel better and can get relief soon. 💯🤞❤🙏

Lover124
Lover124
in reply to grove2519

I’ve had 3 weeks worth of antibiotics. I’m also on Mefenamic Acid as tried Ibuprofen and Naproxen and none really gave me relief. When I spoke to my Gp today she said there’s a possibility that the infection could still be there because of the fluid feeling I’m getting but she won’t be able to do anything until I’ve had a scan 🤦🏻‍♀️

Hello tow years ago I had same pain and finally did mri find out I hat polyp .so probably

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