Tropic2 months ago

😨 I am so sorry. That sounds absolutely horrendous! How is endometriosis still in your body now they’ve taken your uterus and ovaries?!

Awwy in reply to Tropic2 months ago

If you have implants and they miss any or don't excise them by getting to the root then they grow again. Endometriosis has its own estrogen (not sure how it works tbh). That's what I've read in studies and research im.doing on this horrible disease.😒 im no medical expert, so can correct me if im wrong.

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Bettyheslop in reply to Tropic2 months ago

I think if you have even the tiniest bit left it can grow. I don't think covid helped as I couldn't see the surgeon that I needed to see last time x

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Tropic in reply to Bettyheslop2 months ago

Thanks ladies. What a horrible condition x

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Big-Bang2 months ago

The damage to a kidney takes a long time to establish and therefore they should have treated it long before if they knew the ureter was affected. This severe endometriosis always needs to be treated in a specialist centre.

Sadly my endometriosis was found too late and I lost my left kidney 5 years ago. No issues with the right side as yet.

Hope your surgery goes well 💛

Bettyheslop in reply to Big-Bang2 months ago

Exactly how I feel, why wasn't it picked up sooner. Now because it's urgent that I get my kidney removed as its huge and full of fluid I'm just having to get it removed then try and see endometriosis specialist again after. And hope I can prevent more spread.Do you mind if I ask how your kidney surgery went? X

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Awwy2 months ago

Hi Betty,

Im so sorry to hear your story. I wish you all the best with your surgery. I wondered if you dont mind sharing what your symptoms were? I think I may be headed the same way. The pain in my left side is horrendous and they cant see my ureters in the recent laparoscopy i had. Sorry I cant advise you of your current condition. X

Bettyheslop in reply to Awwy2 months ago

I think one of the main issues is when we have severe endometriosis we get so used to being on pain we don't always realise how much pain we are in until we are in a mess.The thing that made me go to GP was I felt like I had something stuck under my ribs that shouldn't be there. It was really uncomfortable. Since then it's really painful and there is a dragging sensation from halfway up my chest and downwards. I'm on morphine for the pain but actually it's the feeling of something being there that shouldn't be that is driving me mad the most. I've had a couple of trips to A&E for intravenous pain relief. Also I'm ridiculously tired. Mine is on the right side x

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Awwy in reply to Bettyheslop2 months ago

Hi Betty Bettyheslop

Thank you for sharing. I can understand the fatigue. Agree about pain you do get used to a certain amount. Hope you get some respite and everything goes well. I will be thinking of you. 💜

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Lucie442 months ago

Deep infiltrating Endo is so scary isn't it. I really hope this is the last of the surgery for you now the uterus and ovaries are gone, as it cannot continue to spread anywhere else at least. I'd be tempted to ask for a scan of your organs to ensure nothing else has been missed as like you say Endo implants can still cause issues. I hope this won't be the case. At least they could offer you some peace of mind if they check. I'd say given your history you have a good argument to request a scan as the kidney damage occured relatively quickly post surgery. My DIE is right through the wall of my bowel so they shaved the bowel wall then left it instead of resecting as he said it was too diffuse across bowel so now I'm just sat here waiting for a hysterectomy as he said I need that but didn't perform this at the time due to consent as he didn't expect my Endo to be as bad as it was until he opened me up. Hate this disease so much. Best of luck to you xx

Bettyheslop in reply to Lucie442 months ago

Yes very scary, I'm sorry you are having such a hard time and I really hope your hysterectomy helps and all goes smoothly. I'm really starting to think how unlucky can I be, surely this will be my last surgery.I think I've come to the decision if they don't agree to give me regular scans I'll have to find the money and pay privately, I can't carry on just waiting to see what happens x

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Ess19822 months ago

hi Betty, I didn't want to read and not reply... I don't have experience of removing a kidney. However I will shortly be having a radical hysterectomy and bowel resection.. it's a horrible horrible disease and I hate that generally it's considered 'period pain'. We definitely need better research into it. (I've had my appendix removed as a child and I have no thyroid due to having had thyroid cancer not endo rekated) just wanted you to know you're not alone in having 'pieces of you' removed I often think the same. 'What next?' Sending you lots of love xxx

Bettyheslop in reply to Ess19822 months ago

Yes more research definitely needed. Trying to explain it to others is hard too. Sorry you are going through so much too, it's just so awful. I have thyroid issues too, it was overactive for years made me very poorly. I had the radioactive iodine and no longer have thyroid function either. It just adds to all of the problems and makes you feel even more rubbish. I really hope your everything goes well for you x

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Ess1982 in reply to Bettyheslop2 months ago

snap had the iodine too... hope everything goes ok for you as well. We deserve that at least! Xx

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Avourneen2 months ago

I'm sorry you have had to go through this, I know ex`actly how overwhelming and disabling it can be.I don't think is actually that rare. My sisiater has really bad endo and it grew over her uteras when she had a totaly hysterectomy. I have DIE and the doctors have said it is too ba dto operate on unless it is an emergency, I have to have my ushers and kidneys scanned every six months because they think it might spread like this , but everything else is so stuck together that they don't want to operate until they absolutely have to.

DIE endo tends to get like this it is pretty bad and there's not really any decent treatment.

When endo has grown a lot and really spread it produces its own oestrogen, so having the ovaries etc out helps, but it doesn't stop it. That's why lots of women have problems with it even after menopause. The only hope really is for more research, professers in Deinburgh are working ion a trial of a repurposed drug that seems to shrink the lesions and it is non hormonal. The results of the trial are due in a year but it could really help. Stay strong and don't give up. XXX

Bettyheslop in reply to Avourneen2 months ago

Thank you so much for your reply. So there is no help for you unless you get organ failure? Its crazy. I'm so sorry, you must feel like you are waiting for something to happen.I do hope the trial you mentioned helps. Even if its in the future and young girls get sorted faster x

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Avourneen in reply to Bettyheslop2 months ago

I have a frozen pelvis and very bad endo right through the bowel, I've talked to 4 specialists and 3 said the work on the bowel would be extremely risky, apparently it could make things worse because they will have to cut so much out. But one guy said to try it, but that it was a very risky op.So nothing for it but cross fingers and hope it doesn't spread too much more... XXX

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Bettyheslop in reply to Avourneen2 months ago

I'm crossing my fingers for you too. I really hope it doesn't spread x

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Bluehaze1232 months ago

Please tell what were your symptoms? I doubt the same. Did you take blood tests to check the kidney profile before you knew you have endometriosis on kidneys?

Bettyheslop in reply to Bluehaze1232 months ago

I was having regular blood tests and gp just kept saying they were satisfactory. I also developed high blood pressure which kidney consultant says should have alerted gp straight away. Even now if I have kidney blood test it's only just over normal levels. I have had the scan that shows kidney is dead and my other one has taken over function.Really main symptom was just feeling like something was stuffed under my rib on the right that shouldn't be there. Now it's so heavy and uncomfortable, I can't get comfy, can't sleep x

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Bluehaze1232 months ago

Thank you so much for your reply.

K20232 months ago

hi Betty , I’m so sorry to read about your situation. I can relate to the Endo around the Ureter . My journey started last year, pain under left rib , left flank and left groin , kidney swollen and Ureter hidden in endo ! I had scan after scan over the year and my last scan said the kidney pipe is significantly longer than should be but is functioning. I’ve been on a priority waiting list since June and secretary said due to me needing MTD team I could be now looking at February/March . It’s been so difficult to get the Urology consultant to hear me out about the pain , I’m sorry I can’t shed any light for yourself but reading you’re story made me feel less alone and when you mentioned rib pain I felt such a relief as I know now it’s from the kidney . I have had endo 30 years but never been in constant pain like this time . I really hope you finally get relief after your operation.

Bettyheslop in reply to K20232 months ago

Thank you so much for responding. I'm really sorry you are going through it too. Especially with the long wait you have ahead. If I'm honest I think I need to see more people and probably have endometriosis specialist in op but since I've started seeing kidney consultants all I hear is it's urgent (although urgent still a few months wait) possibility of rupture and infection. I'm just so desperate to get kidney out I'm having to just cross my fingers it's okay.Maybe because your kidney can be saved they are taking more care? Mine is definitely dead.

I've had endo for 30 years too and this feeling is so hard to explain, it's literally unbearable as it's not just pain it's uncomfortable and you can't get comfy.

GP didn't believe me when I went in complaining of rib pain, took a while to get through to consultant. I only got morphine as I went to A&E as couldn't stand it anymore then I phoned gp and said the least you can do is prescribe me morpine since you missed everything. I often feel like whoever I speak to thinks I'm exaggerating and it always takes ages to get help. I always get 'well you look well', which isn't very helpful when when I could often quite easily be tempted to remove my own kidney!

I really hope for you that things move a bit faster than you expect and your kidney is okay. Be thinking of you x

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