infections caused by endo

[Poppyg16]

Hi everyone, sorry this is long, I hope you are all having a ‘low pain’ day.

I was just wondering, out of curiosity, if anyone else has suffered from abdominal infections caused by endo.

I am just getting over my third this year and have trouble identifying when the pain is infection as I’m sure you will all relate to extreme pain being a constant for us. I left this latest infection 10 days before I went to a&e because as many of you know we often get dismissed by doctors with little knowledge of our condition. I knew I needed to go as even tramadol and oral morph weren’t touching the ‘shout out pain’ and it was spreading up from my lower back, I hadn’t been able to eat very much for days, felt extremely unwell/weak and my skin turned a funny grey colour with my lips turning pale with a blue tinge!

As I’m on an urgent list for total hysterectomy, excision and bowel resection and as I’m post menopausal with endo and adenamyomas that is still growing fast, I took all my latest scan results and consultation letters and went in with an attitude of, I’m not here for you to fix me, I think I know what’s going on, I’m under the care of a specialist endo centre and I just need my inflammatory markers checked to make sure I haven’t got an infection again as when this first happened to me a few years ago I ended up in hospital for about a month with sepsis and then cdiff as I left it too long to seek help.

To my surprise I had a really positive experience with a fantastic doctor. She listened to my history and acknowledged I knew more about my body and condition than she did as I’ve lived with it since age12 and I’m now 56. She took the bloods as requested and I explained to her I didn’t want to take antibiotics just in case as I’ve already had them in the last 8 weeks but needed reassurance of no infection as I felt so ill.

My results came back an hour later and my inflammatory makers were very high, so on the strong antibiotics again, which in themselves make me feel so unwell. The doctor said she really wanted me to take them as I had complex heath conditions and she said with makers that high I would be probably be in hospital in a few days if I didn’t.

I really appreciated a doctor who was kind, listened to me and was honest, it was quite a shock really. What was so impressive was how concerned she was about me and my husband and how we cope as I’ve had years of this, 10 abdominal surgeries, breast cancer and now also battle with fibromyalgia the combination of which leaves me bed bound most of the time and I admit after years of this I am very low and worn out with very little left in the tank. The only thing that keeps me going is the hope my life can improve, so I can at least live a bit and not just exist, after I get through the ‘big’ surgery.

I know this is a long post but I just wanted to share to say to all you brave people on this forum, trust your instincts, you know your body best and please don’t leave things just because of the many bad experiences we have to go through with doctors. I have let myself again get very sick before going to the hospital, if I’d gone a few days earlier I could have probably had another antibiotic that didn’t make me feel so unwell and not had to get so very poorly.

I think the problem is we learn to live with daily pain and health challenges that most people who are well would find unacceptable even for one day!

look after yourself lovely people and I wish you a restful and peaceful festive time, even if like me you can’t join in with much please make time for yourself, say no when pressured into doing things that you know you’re not well enough for and put yourself first for some quality time for yourself doing Yuletide your way.

All my best regards

Poppy 🌲

[Moon_maiden]

Hi

How are you feeling?

There is some link with Endo and infection, not that they know why. First Gynae asked if I’d ever had a bad infection which I had. He’s the only one that ever asked though.

Glad you had a good experience last time, like you say don’t leave anything to chance but it is hard to fight against the crap which happens. Nice drs are a rare breed these days.

Hope you get op soon. If you haven’t tried Diclofenac suppositories for pain they can work really well, but not everyday use.

[Poppyg16 in reply to Moon_maiden]

Hi Moon-maiden, thank you for your reply, I hope you are doing ok today. I’m feeling much better than I was as I’ve finished the antibiotics and the pain is now back to its everyday level which I can get some relief from with strong painkillers. I’m still mostly bedridden with the fibromyalgia and chronic fatigue but this is my normal at the moment! I’m also suffering worse bowel symptoms, feeling very tearful and trying to combat the negative affects of antibiotics with lots of pre/probiotics, natural yoghurt, and kefir. I know the routine so hopefully my tum will settle in a few days and at least the intense nausea has gone and my face is a better colour. I’m just frightened that this will keep happening until I get my op as it’s the third time in 6 months! My consultant has apologised to me for the wait as she had hoped to do my surgery by the autumn. She told me the strain on the nhs is causing the longer wait but will try to expedite a date for me as I’m progressively getting worse, which ties up with my latest mri.

Thanks for the tip on suppositories, my stomach is so sensitive as I take so many meds, even though I protect it with omeprazone, so a way of bypassing the stomach would make a lot of sense. I request my meds online so I will add a note and hope for the best.

Take care, all my best wishes

Poppy

[Moon_maiden in reply to Poppyg16]

Sorry it’s such a rough time for you, sounds like consultant is trying, sort of helpful. It doesn’t help you quick enough, I know how bad it can feel, unless you’ve experienced it there’s no way you can truly understand how bad it can feel. Hormones will make you tearful as well as pain, neither of which you can do much about, don’t feel guilty. Not sure why I’ve put that but we often do when ill. This is a disease that wasn’t anything that could be helped, it’s not a lifestyle choice that put us in this position it’s a disease with so far no control over. One day hopefully 🤞

Metoclopramide is great as an anti nausea if you haven’t tried it. I normally take at least one a day after eating.

You’re doing all the right stuff with probiotics etc. This disease just sucks!🤦‍♀️😂