Does anyone else’s Endometriosis like to trigger infections?

[Heloo85]

So, I likely had Endometriosis for years prior to diagnosis, I’d have considered myself healthy, bar the back pain and low level fatigue! My fate changed about 4 years ago where I was diagnosed with non-sti PID, I was poorly, sent for a lap, diagnosis changed to Stage 4 DIE sub cat aggressive Endometriosis! I had the whole surgery, bowel, bladder, both ovaries, side wall, ligaments! My surgery was 6 hours long! I never recovered from surgery, it wasn’t a ‘cure’! I got chronic pain, slowly losing my mobility, my disease quickly returned! I have been on Zoladex, combined pill, nothing over the course of the last 4 years! A couple of times I’ve been diagnosed with PID! Well Dr couldn’t decide between infection and constipation! The last one landed me in hospital with sepsis after an abscess formed in an ovarian mass, likely to be endometriosis! Has anyone had a similar experience? A & E thought I was mad when I rocked up to tell them what was wrong! The gynaecologists on call was saying ‘no way’ too!

[Moon_maiden]

Oh crikey you’ve been through a lot, ignore comments like that. It’s ridiculous when they can see the treatment you’ve had already. Are you under a pain consultant? If there is nerve pain involved they can help.The times Ive actually had an infection has been around period time, not always, but nothing showed in urine.

Do you have a standby pack of antibiotics just in case? You can buy test strips and sample bottles on Amazon or similar. I’ve done this to get a rough idea, but still been to doctors to confirm. You don’t want sepsis to happen again.

I hope you do get some sort of solution soon. Take care 🙂

[Heloo85 in reply to Moon_maiden]

Hi,

I was under pain clinic, with little to no relief of pain. I am half retired, on PIP and limited capabilities for work, so that helps a bit, although just had to quit a job because of a refusal of putting in reasonable adjustments and keeping to them.

Funny enough I used to always have a backup of antibiotics, or if I didn’t have any, would quite easily get a same day appointment with the gp, but with the Covid situation, it’s a lot harder to get antibiotics! If I see a new Dr it’s the same as you, urine sample that’s clear, sti checks that are clear, I’m talking rubbish, it’s constipation! I get so fed up of it!

I don’t suggest ignoring any pelvic pain and or slight fever, I ended up so ill I wanted to die! I certainly don’t want to go through that again, and I’m post 4 week and still don’t feel great! Now awaiting surgery to remove the masses, and no idea when that’s going to be!

But thanks for your well wishes, make sure if you think you have an infection, get it treated.

Kim.

[Moon_maiden in reply to Heloo85]

You probably know this already, but your old work place has likely broken the equality act by not doing the appropriate changes.🤞 you don’t have to wait long. Don’t let them use covid as an excuse for seeing GP. Had a huge whinge the other week when I ended up speaking to yet another GP who told me from the off she wasn’t going to be able to help much. In the end she helped with one of the main queries (pg A4🤣) and looked into autoimmune a bit more.

Keep plugging away at them 🙂

[Heloo85 in reply to Moon_maiden]

I know what you mean about the autoimmune, I too have been through the work up and even though there’s a connection between Endometriosis and autoimmunes, I always come back clear! It’s so frustrating because you get such wide and confusing symptoms! My knuckles break out in inflammation, like I said I’m losing my mobility, I am gaining allergies by the day, I have muscle and joint pain! Up until the sepsis, Drs thought I was lying, making it up, probably just trying to get out of work, maybe scam the dole.... Then I ended up on deaths door! God, this disease is frustrating!

Good luck, I hope you find answers but I am well aware that Endometriosis causes a lot more than ‘painful periods’, it maybe Endometriosis causing all of your symptoms! Don’t be disheartened if you find nothing! It will be that!

Kim

[Moon_maiden in reply to Heloo85]

I haven’t made up my mind which I’d prefer, ideally neither 🤣 if the GP is right, Scleroderma, I’m really screwed, if there’s still endo/adhesions on my bowels, not sure I’m any better off, but possibly more achievable. I did tell him not to leave any behind with hysterectomy last month, he had a few complications so not sure yet. I am holding out that I may just be impatient.Had some blood tests last week specifically for autoimmune, hopefully results won’t take too long.

Try to ignore when they say stupid things, I think they have more lessons on how to avoid helping patients in medical school 😆🤦‍♀️ Than they do to help.

[Heloo85 in reply to Moon_maiden]

Drs are useless to be fair! They got a gynea down in A & E for my sepsis work up, and she mistook my cervix for my uterus!

That’s a bad autoimmune, so fingers crossed it’s not that! I do believe Endometriosis causes systemic inflammation! I get inflamed knucked, diagnosed Reynolds, psoriasis of the vulvar, I get chronic thrush, chest infections, joint pain, stomach issues, bowel issues, bladder issues, kidney infections, susceptible to infection! List is endless to be fair! I’d say Endometriosis does more damage than Drs think!

I hope you get to the bottom of your symptoms and find relief!

Kim xx

[Moon_maiden in reply to Heloo85]

Thank you 🙂I’ll bet gynae was a new registrar, not helpful though. Slight change is subject, is it definitely psoriasis on your vulva? I was diagnosed with Lichen Sclerosus a few months back when I saw endo specialist. It’s a skin condition, not catching, that causes white skin and adhesions. Causes thrush like symptoms and can cause breaks in the skin, etc. I’d assumed thrush for a long time.

Endo has definitely caused more problems than any GP I spoke to thought. Can’t get an apology though 😂

[Tinytina15]

I’m so sorry about all you’ve been through I can only imagine how hard it’s been, I don’t have endometriosis diagnosed yet, so I don’t really have any advice/experiences but I was just wondering how your PID was diagnosed? And are there tests they do? As I was in A&E last week with severe pain and The dr said potentially PID or ibd/ibs .. could also be endometriosis but they wouldn’t investigate they just treated me with painkillers and told me to go back to my gp, I’m currently on a waiting list to see a gynaecologist but I’m not classed as an emergency so I could be waiting 3-6months. I’m sorry to ask questions my gp is useless, unless I directly ask for something and while waiting I wanted to push for them to look into other things it could be

I really hope your health improves, take care xx

[Heloo85 in reply to Tinytina15]

My first ever case was dismissed by Drs including GPs and A & E Drs as swabs for sti was clear, and although I had sepsis markers it was deemed viral so sent home! An ultrasound showed masses amount of abnormalities and I was sent to GUM clinic, who when took swabs, my cervix broke, after the infection spread out! About 6 weeks after my A & E visit! My slide showed bacteria and I was diagnosed with PID, sent away with antibiotics! I got a call a week later to explain I did have PID, that I was to continue with anti-bs, but it wasn’t an sti, but no culture was grown! I was sent for a lap and Endometriosis was diagnosed! Since then, my good gps believe me when I say I have PID and treat without swabs that I know was clear! This time I was on deaths door, clear sepsis, inflammatory markers where in high 100s, far too high for viral! Ultrasound/mri showed endometrial masses, ovary and over places! Good luck! If you ever get a fever and pain, get it treated! It’s more common than people think and is suggestive of severe disease! I hope you get your diagnoses soon! Xx

[Tinytina15 in reply to Heloo85]

Thank you that’s really helped, I can’t believe they’d just dismiss it that’s horrible! I’m glad they take you seriously now x

I’m starting to wonder if pid is a possibility, one doctor suspected it as I had a fever, high temperature and was on antibiotics for bacterial vaginosis. I didn’t even know I had it for months .. so I’m wondering if that turned into pid? And explains why I was in so much pain? No one diagnosed anything I was just sent home with laxatives due to constipation which I thought was causing the pain, some pain killers and more antibiotics 😞 I Just want it looking into but I didn’t realise how much pain you can be in and still be ignored by people who are supposed to care and treat you 😞 xx

[Heloo85 in reply to Tinytina15]

It sounds very much like Endometriosis! Yes BV can cause PID, Endometriosis increases your risk of PID, and also means PID will be more severe! But I get the severe constipation, have done for 4 years! It is hard because medical professionals just want to blame IBS, or STIs, it can’t possibly be anything other than that! Lol. You need to request an ultrasound, they cost the NHS pennies, just tell your Dr to sort it, hopefully something shows and you go from there! A clear scan doesn’t rule out Endometriosis though! I’ve been losing the ability to walk for 4 years, I’ve been feeling this mass for ages, but supposedly nothings shown in ultrasound, I think they lie!

Best of luck! Don’t take no for an answer xx

[Tinytina15 in reply to Heloo85]

Thank you so much, I had an ultrasound but all that showed was pcos as far as I know but I don’t think he was trained to spot endometriosis, I’ve read that can be what fails people sometimes. I’m glad I came accross your post as I was so confused to how much pain I was in, because I was told there were no hemorrhoids no fissures and it shouldn’t be hurting me to go to the toilet .. but I was like .. it does tho! I’m so sorry you get the constipation too! It’s absolutely horrible! I wouldn’t wish it on my worst enemy! But yes they Said IBS or IBD .. and haven’t even looked into it. I just feel shoved off again 😞. But I’ve managed to get a cancellation appointment at my gp today for them to possibly get the ball rolling some more so fingers crossed There’s a diagnosis soon 🤞🏻

Take care and I definitely won’t take no for an answer ☺️ xx

[Heloo85 in reply to Tinytina15]

Unfortunately it doesn’t get much easier after diagnosis either! My diagnosis was early 2016, I had my multidisciplinary surgery December 2016, since then all I’ve had is 3 monthly consultations, bounced between Zoladex and combined pill, with no relief, I almost was going to have another lap to check the progress of my disease when Covid hit! That went by the wayside! Then almost died from sepsis! Now stuck between a rock and a hard place and I’m not holding my breathe that I’ll get any treatment soon! 1 my consultant is off ill and 2 they ain’t rushing to sort much atm!

Don’t waste too much energy battling now, you’ll need reserves for later!

Kim xx

[Tinytina15 in reply to Heloo85]

Omg that sounds horrendous! I really hope they sort you soon! That’s been such a long time!

Yeah I was told there’s a 5/6 month wait just to see the gynaecologist.. doesn’t seem like they’re rushing much at the moment xx

[Pinkmice]

Sweetheart You like many others have been suffering its part of pattern of this that

we get infections which trigger a lot of pain,trips to the hospital etc

I feel for you in this day and age why do women of any age have to put up with

the stress to us plus to those around us relatives,workmates just to name

a few.

You not going mad it's just the endless round of infection which causes other medical

things to happen.

Chemist, natural items in your diet will also help - herbal items- but it is another thing

to find time to source the things that will help you at this present differcult time.

Pain relief the old fashion way with help of GP's,etc ,etc