Endometriosis UK
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Endo update

Hi guys so had mri scan then met with surgeon again; it's been 5 weeks since my kidney and open abdomen surgery at the follow up appointment after mri I was adviced that I still have sepsis and both my falopeon tubes are swollen and my bowel is more damaged he told me if they operate now to do hysterectomy I'll 100% end up with a bag to poop in because of all the damage caused by sepsis because Drs didn't pick up on it for 7 months; so now I have to go on antibiotics for 6 weeks can't remember what there called picking up from gp on Monday they begin with s that's all I remember; after the 6 weeks I'm booked back in with surgeon who will then schedule my full hysterectomy for soon after this I'll still be high risk for a poop bag but risk reduced slightly due to 6 week wait; 😥so guess it's goodbye to summer lol coz I'll be bed bound

I'm still looking weight lost another 8lbs in 5 days total loss 4 1/2 stone in 3 months

Dr said a lot of it is due to sepsis as it eats away at your calories plus I'm still struggling to eat;I still have to keep the kidney stents could end up being permanent which means surgery every 6 months to replace; I suppose the end is near even if it's not going to be a good one; but at least all the pelvic pain with be going;

I'll keep you all updated

Please ladies push at your GPS they ignored me for months said it was only cysts no way endometriosis and my pain is more to do with my mental health issues (depression; anxiety)yet a week later after being admitted I had 2 major operations and was told I have severe endometriosis and a frozen pelvis as well as them finding an abscess in my right falopeon tubes which spread everywhere and gave me sepsis and caused even more damage;

Ill no longer be able to have children and i have to go through the menopause they really have took my life away from me because of there negligence and mis diagnoses......

Please push to have further checks xxxxx

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Hi lovely - I was going through the same boat - luckily they caught it before it was sepsis. I am still unable to sleep on my sides as they removed one Fallopian tube which was infected and clipped the other. I also have been diagnosed with a frozen pelvis. As you know! I hope the surgeries fix you. Darling there are so many options for a family - would you consider adoption? Or surrogate with donor eggs? This might be something to think about during your road to recovery. I pray you don’t have to have a bag.

Why are you having oral antibiotics and not IV? Surely the latter would work better? If the oral ones don’t work - take yourself to A&E and demand they put you on oral. My antibiotics made me sick, so I hope you got antisickness too.

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Been on anti biotics for 7 weeks already first 2 weeks we're via I v but now they are changing them they done the request to my gp for the tablets last week but gp still hasn't sorted them out so I'll have to contact the hospital again xxxxx

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Definitely I have realised if you don’t chase about your health they don’t bother. I know it’s not easy and I hope you have family supporting you. Lots of prayers your way xx

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I have a partner but he doesn't really understand how bad it is my family don't speak to me haven't for years and years xxxx

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Hmm not the best - sorry to hear that. Well always here for you. Eat activia or probiotic tablets from Holland and barret or online via Amazon if you cannot go out and about. All those antibiotics are going to disrupt your gut flora and good bacteria. You need to replenish it - they will help you fight your infection.

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Great ill try them hun and thank you so much 💋💋💋💋💋

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No worries I have activia to restore the flora. They will help your immune system as your absorbing the right nutrients with the correct gut flora. Body is all about balance. Drink lots water. Rest and don’t worry needlessly. Watch programs, relax. Do be active but only do what you can. Don’t push yourself. If your partner can help then make sure he does. Get the right nutrition. I really hope you get better soon lovely xx

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Hi everyone I'm after some advice as you all know I had kidney surgery and one open abdomen surgery on 4th April I'm due in for a full hysterectomy in around 4 weeks time I have severe endometriosis and a frozen pelvis but for the last 5 day days I'm getting even worse pain on my left side of lower abdomen/tummy seems to be getting worse daily does anyone have any idea what this could be xxxxxxx

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When was your last period?? Could it be for a cyst? Have you tried heat or pain relief? If it doesn’t stop and continues I suggest you go to A&E

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Is it an area you’ve been operated on?? Are you having frequent bowel movements?? Sorry it could be anything need to know more.

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My last period was a week ago not normal period bowel movements are always difficult passed small amount today it's on the left side of my scar which is straight down the middle; taking zapain x2 and ibrufen x2 every 4 hrs for pain eases it but when wears off pain is worse hun xxxxx

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I really don’t know. I mean on your left Lower down it could be your kidney? It could be gyane related. I suggest if it’s getting worse go to A&E - if painkillers are not working. Or call 111 and get it checked by them. Explain your symptoms. They probably would advise you to go to A&E - it’s best to talk to a medical expert. If it was your right I would say it’s your appendix. I got severe pain on my right and now I am bleeding. I am guessing it’s my period. But it could be anything!! (Burst cyst?!) you won’t know till you get it checked. I suggest 111. If they don’t say go to hospital and it’s getting worse please just go. DM if you want to chat more. Xx

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I also have been told prior to operation I have cysts on both ovaries my mri results a few weeks ago showed that my falopeon tubes are both swollen too xxx

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You sound exactly like me. Same symptoms. I have those too. Get checked lovely. ASAP.

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Lots of gentle hugs. No words if wisdom just lots of empathy. You're having such a traumatic journey :( xx

I lost a lot of weight with my post op viral meningitis and ended up with disease related malnutrition so really relate. I added protein powder in smoothies and breakfast cereals to try to help build back up but it took a long time.

I really hope you turn the corner soon and start to recover some strength xxx

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Thank you so much for your kind words xxxxxx

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