Hi all endometriosis updates: Evening all... - Endometriosis UK

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Hi all endometriosis updates

Loulou1980 profile image
34 Replies

Evening all well since I last posted so much has happened I'm still in hospital been here over 2 weeks now in the time of been here they told me I have severe endometriosis and a frozen pelvis but that was just the start I had a ct scan which they found a mass on my right side ovary and right kidney and showed an obstruction on my wee tubes I had to under go kidney surgery to have stents put in both kidneys to make an opening I also went down for a full hysterectomy last Wednesday but while under they noticed a massive abscess in my right falopeon tube which had spread everywhere and also into my colon they had to drain and clean and are unable to do hysterectomy at this time I have been adviced that I have sepsis due to going in noticed for months I'm now trying to recover from both operations on 5 types of anti biotics via I v and Megga amounts of pain relief

No sign of going home yet

Will keep you all updated

Xxxxxx

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Loulou1980 profile image
Loulou1980
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34 Replies
Dawns72 profile image
Dawns72

Sending my thoughts to you, and hope you feel better soon and get home quick xx

Loulou1980 profile image
Loulou1980 in reply to Dawns72

Ty sweet xxxxxx

natsebisaac profile image
natsebisaac

God thay sounds like you have been through the mill hope you make a speedy recovery and thank god they have found it all to deal with it

What symptoms did you have any water infections etc

Loulou1980 profile image
Loulou1980 in reply to natsebisaac

Severe pain

Weight loss

Loss of appetite

Vomiting

Night sweats

And so on xxxxxxx

Flowersandhearts profile image
Flowersandhearts

Loulou hunny, what a time this is for you!! However this will all be sorted, you will get better and you will go home and look back on this as a time that was tough but also a time that made you stronger!

Stay as positive as you can, your physical body will take time to heal and that's mostly out of your control, however your positivity can be there with you all the way through, straight away. And that will go so so far towards you getting well again.

Stay strong lovely lady, you've got this, you can do this!!! 😊

Sending lots of love and posi healing thoughts xx

Starry profile image
Starry

Omg, you are going through the mill!

Thinking of you, hospital is a horrible place to be for any length of time. I hated it when I was in with my post op meningitis.

I hope you are coping OK and getting lots of family support.

Xxxxx

Chinenye40 profile image
Chinenye40

My prayers are with you, hope you get better soon. 😘😘

Rach123455 profile image
Rach123455

Wow! Tell the antibiotics to hurry up working 😀. Lovely to read your post, especially as a long stay in hospital is as Starry says, awful. Wishing you a speedy recovery too and look forward to the next update. R xxx

Loulou1980 profile image
Loulou1980

Thank you all for your messages I'll keep you all updated as I know been told anti biotics are stating to work to clear sepsis so fingers crossed xxxx

Tillyfloss profile image
Tillyfloss

hi. What an awful few weeks you're having, its a roller coaster being in hospital. I hope you have support and lots of magazines, books to read whilst you rest and let your body fight it all. I had sepsis after emergency surgery and it's just not what you need when you have to deal with everything else.

if you want to chat I'm usually about I also have stage 4 deep infiltrated endometriosis and i had a full frozen pelvis which I had successful surgery on so if you want a rant just shout.

give yourself plenty of time to heal and recover steadily.

cx

Loulou1980 profile image
Loulou1980 in reply to Tillyfloss

Thank you if been told I can't have a full hysterectomy for at least 2/3 months as the sepsis infection spread so much and my insides are in a bad way and I'm still fighting the infections so I have to allow time to heal they have adviced me that it wont be a straight forward hysterectomy operation they have said it's going to be complicated and more dangerous due too the condition inside which is very severe they told me just hoping they can get infection under control so I can home and heal ready for next time

Xxxx

Sparklyjo profile image
Sparklyjo

Fucking hell, I'm so sorry sweetie. Get well soon xxxx

Rae253 profile image
Rae253

Hi I just read through all of your posts, you’ve been through so much! I know you must really want to just go home but you are definitely in the right place. It’s good that you’re at least being told what’s wrong now. Just rest and hopefully all those antibiotics will start to kick in soon. It’s the waiting and wondering that’s stressful isn’t it, but try and stay strong, you’ll feel better soon hun. Rae x

You poor thing, you are having such a time of it. It must be so horrible being stuck in hospital in pain and with bad news every time they do anything. There’s nothing I can say to make it better, I know, but i am sending you so much sympathy and good wishes xxx

Loulou1980 profile image
Loulou1980

Hi guys; quick update I was allowed home yesterday from hospital with all my medication to recover from operations and sepsis infection so hard to get comfy in my own bed but glad to be home for a few weeks I'm on complete bed rest with minimal walking aloud due back in hospital on the 27th to see when next operation is

Glad to be home for now though xxxxx

Tillyfloss profile image
Tillyfloss

hi. So pleased you are home that will help you relax and heal. Bed rest is very frustrating but I didn't listen to it after my first op and i paid the price, second time I was the model patient and was feeling better quicker so its worth doing it. Are you on tablet antibiotics for the sepsis? Hope you have plenty of support and help whilst you recover. Xx

Loulou1980 profile image
Loulou1980

Yes on lots of anti biotics started having via I v in hospital then moved to oral laid in bed now so hard to get comfy lol xxxx

Loulou1980 profile image
Loulou1980

So hi guys so I got let home from hospital on the 9th and guess what if just been admitted again infection on wound from surgery problem with kidneys again so urgent scan booked and uti?? How can I keep getting infections when I'm already on anti biotics and have been for 3 weeks due to sepsis feeling very frustrated right now xxc

Thinking of you x

Loulou1980 profile image
Loulou1980 in reply to Littledisneyprincess

Thank you sweet xxxxxxxx

Rach1701 profile image
Rach1701

I'm so sorry that you are going through all this I hope you have family or friends that are supporting you through this difficult time. Wishing you a speedy recovery x

Loulou1980 profile image
Loulou1980 in reply to Rach1701

Ty I have my partner that's it but he's been amazing so can't complain thank you for your kind words xxxxxx

Minchoo profile image
Minchoo

Get better soon beautiful 😘😘

Loulou1980 profile image
Loulou1980 in reply to Minchoo

Thank you xxxxx

emmaquinny profile image
emmaquinny

Sounds like you’ve had an awful time I hope you are feeling better very soon....I had a really bad infection which turned into an abscess between my eye and brain back in 2013, and it took them quite a few antibiotics before they found the right one but they did in the end, hang on in there x

Loulou1980 profile image
Loulou1980

Aww sorry to hear that glad your ok now; and yeah I'm definitely going through it and end no where near yet should be having full hysterectomy within 2/3 months once iv healed from all this main fear is loosing my bowel bit trying not to think about that right now

Thank you for reply xxxxx

emmaquinny profile image
emmaquinny in reply to Loulou1980

You are so welcome, there have been days when like you, my pain has been so bad with so many unanswered questions and frustration I didn’t want to keep going-if it was not for the support of this group and just reading and knowing I’m not alone, I don’t know where I would be. Keep us up to date and have a good moan if you need to 😂👍🏻

Loulou1980 profile image
Loulou1980 in reply to emmaquinny

Yes totally I really wanted to give up when I first came to hospital 3 weeks ago I really hit the bottom and didn't want to carry on but people on here have been so amazing and supportive and helped me through

And will keep you all updated xxxxxx

Loulou1980 profile image
Loulou1980

Well no going home today for me Dr has just said they are not happy to let me go until they have scanned my kidneys ECT which won't be till next week :(xxxxxx

Best wishes for a speedy recovery, I hope you're feeling better soon, you've dealt with so much - keep fighting xx

Loulou1980 profile image
Loulou1980

So just been for scan again been told I have build up of fluid on left kidney which shouldn't be there coz I had surgery to put stents in

One thing after another don't know how much more I can take

Still sat in hospital just waiting for Dr now to see what happens next

😭🤒😷

emmaquinny profile image
emmaquinny

Hope you are on the road to recovery x

Loulou1980 profile image
Loulou1980 in reply to emmaquinny

Hi hun I'm back home had another scan which has showed my left kidney has fluid in but they said they were happy to let me go home and keep an eye on it I'm due bk in hospital on the 27th for review and update on next operations

My abdomen wound has still not healed it is infected even after taking anti biotics so bk to Drs Monday morning

Thanks so much for asking xxxxx

Loulou1980 profile image
Loulou1980

Hi guys sorry iv not been in touch for past few weeks but been really poorly again had blood tests done over a week ago which showed my crp infection levels are 110 when they should be 3 but no uti or kidney infection so looks like it's the sepsis again so now I'm on 2200mg of anti biotics a day for next2 weeks; constant pain and sickness also; I had my mri scan this evening and I'm due to see my surgeon again on the 18th of this month and I'll hopefully have date of operation for full hysterectomy so scared of this ok as due to damage of last operation and sepsis everything is even more stuck together and if been adviced I'm high risk of losing my bowel and end up with a bag

I'm trying my hardest not to think that far ahead but it is hard

I'll keep you all updated xxxxx

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