why can’t I have surgery!!!!

[maestrogirl-79]

Sorry I just need to have a rant.

I’m 45 and been suffering badly with endometriosis since I was 14. I finally had at a laparoscopy at aged 28 where everything was stuck together and my kidney function had dropped due to my uterus being blocked. (I didn’t know this at the time). Then after become anemic and collapsing several I was given a full hysterectomy 10 years ago. Then 2 years ago my periods restarted and I discovered that the endometriosis has regrown on my bowels bladder and kidneys. My kidney function is 20%. Tried to get a referral to gynaecology in Aneurin Bevan but was told to go to a menopause clinic instead. Booked to see Mr Griffiths in Cardiffs spire who after trying dienogest and several kidney stents suggested that the only solution now is surgery. Got the funds to have it done privately but the bowel consultant said I would need to have it done on nhs so that there is a ICU on standby. Was told in April this year that I would be put on the waiting list. Rang in September to find I hadn’t been put on the list but promised I would be. Rang this week and was told that Mr Griffiths does not have the power to put me on the list and as I’m out of the area I can not be put on the list. Was told to go back to gynaecologist in royal gwent??? So as my kidney function is slowly deteriorating and I’m struggling to walk due to the pain, I can’t have the operation privately or on the nhs.

[Thediseasecontinues]

I’m so sorry you’re having such a hard time accessing needed treatment. I don’t blame you for wanting to rant 😱 and hope you feel the sympathy and empathy needed on here. I really hope they can sort themselves out soon enough for your renal function to be improved. x

[Hannah818]

ring PALS and ask for advice , I'm having issues with going round in circles too and thinking of ringing PALS

[maestrogirl-79 in reply to Hannah818]

Thanks. I didn’t think of them. Will try them tomorrow 😀

[1Poppy1234]

Can you pay private at the NHS hospital you can in Derbyshire it's worth googling as then the ICU would be there. Think it's slightly cheaper than the Nuffield too. Hope you get help.

[maestrogirl-79 in reply to 1Poppy1234]

ooo I didn’t know that. Thank you. Will definitely ask.

[Bettyheslop]

Hi, I'm so sorry you are going through this. I wish I could provide answers but I'm actually in a very similar position to you and struggling to get help. I'm 45 and over last 9 years have had 6 surgeries to remove, uterus and 1 ovary, my appendix, my other ovary, endometriosis removal and my last surgery was to remove my right kidney as endometriosis had strangled it, it had become so enlarged was the size of a melon and ready to pop it was so thin. Was completely dead. As soon as it was gone I started experiencing issues with remaining kidney and am now in kidney failure.

I have seen endometriosis specialist many times, and urologist a few times but trying to get them to work together is impossible, it's hard enough getting an appointment with just one. I have appointment with gp next week to ask for another scan and kidney help. It's bad enough having severe endometriosis but I don't think people often realise it can take over your body and threaten your life. I'm taking dinogest too at the moment and not enjoying the side effects but at this point will try anything.

I'm sorry I don't have an answer but wanted to let you know you are not alone and I'm crossing my fingers for you that someone actually helps you and soon xx

[maestrogirl-79 in reply to Bettyheslop]

oh my goodness. That sounds awful. They won’t look at my left kidney. I keep asking for a scan of some sort but they say it’s not needed! Yet in my hysterectomy notes it’s states that both kidney tubes were blocked. I’m also type one diabetic (44yrs and I’m 45 never been hospitalised etc for my diabetes) and my nephrologist says my kidney problems are due to that! He doesn’t believe the mri or my gynaecologists reports!

I’ve been on dienogest for two years and once the side effects went after a couple of months I’ve found them great. The only downside is that I’ve put on nearly three stones and can’t shift the weight not matter how much I exercise or diet.

Take care. Xx

[Bettyheslop in reply to maestrogirl-79]

Snap! I've had other consultants tell me it can't possibly be my endometriosis causing kidney issues and I have to say look at my notes it literally is!Also seen gynaecologist who believed it but went and got his whole team to come and have a look at me as if I was an alien as apparently rare.

Being diabetic must add another awful unwanted layer to the situation.

I think once you have one autoimmune condition you are prone to others. I have thyroid issues too.

Hopefully dienogest will calm down for me, I'm with you with weight gain, I've put on over a stone since having kidney removed and don't know if it's because of kidney issues or menopause!

It's not ideal but if you have the means can you pay for private ultrasound of kidneys? In-between all of my surgeries I've twice paid for private scans which led me to be put on NHS waiting lists for CT's and consultant appointments.

On weds I'm asking GP for referral for ultrasound and if she doesn't I'll pay. Not that I can afford it really but after losing one kidney I think it's worth getting in a bit of debt which might save my life.

Have you been told to go on a special diet for your kidneys? All I've been told is to cut out salt but I've heard of people on strict kidney diets xx

[maestrogirl-79 in reply to Bettyheslop]

Ultra sound is a good idea. Might look into that. Not sure in wales you can get one without a referral.

Diet wise I have to follow a low potassium diet as the blood pressure tablets I’m on increase potassium levels. Which is complete opposite to the endo and diabetic diet.

Do you have a kidney stent? I’m on my fourth and this one is really sore. Feels like it’s trying to escape through my back but I am only allowed 2 paracetamol a day due to the kidneys!!

[Bettyheslop in reply to maestrogirl-79]

That must be hard work trying to get diet right. No stent yet, and no one wants to do surgery on me unless really have to as I've had so much. I think I might get a stent when I'm almost dead the way it's going!

I actually managed to convince GP to refer me to ultrasound which is in 2 weeks so see what that shows. I've been on and off blood pressure tablets but going back on them along with statins as they are saying way more likely to have a heart attack with kidney issues.

You are starting to make me feel lucky though, 2 paracetamol is ridiculous, I'm sure that doesn't touch the pain. I'm still in severe pelvic pain from endometriosis and bladder damage from surgery. I get given codine and oramorph. I phoned surgery once and said you missed my kidney being huge and dying even though I kept telling you, the least you can do is give me decent painkillers! Surely there is something stronger you can have.

If you are on your 4th stent would they consider transplant?

[JenRow7]

Gosh! That's awful! I'm furious for you. Definitely complain. Are there any other private consultants you can contact? You need to ask nhs which consultant does have the power to get you on the list. And if it's possible to see them privately as appointment then put on nhs list maybe? Also I'd write to your MP highlighting the problem.

But of course you might not feel like it as you sound pretty poorly. GP no help? Can you change gp to get re referred?

Good luck xxx

[maestrogirl-79 in reply to JenRow7]

Thanks for replying. There are only two consultants in south wales and I’m with the one with the shortest waiting list (2years on private). I’ve just changed gps cause the first were impossible to get an appointment etc with and my current female gp doesn’t believe in endometriosis her words! I’ve done two referrals to local health board. Both refused.

[JenRow7 in reply to maestrogirl-79]

Gosh that's soo difficult. Such a postcode lottery. I can not get my head around a 2 yr wait for private. Did you see the wait lists on the news this evening? What about Bristol? Do you have to be seen in Wales. Do you have an endo support group near to you?

[Aino26]

Hey, I just want to send hugs. The system is infuriating. I'm finally getting an MRI by being referred to go private. I fear a hysterectomy is not the answer for me, which is what ny consultant is pushing for. For you, I don't understand why private can't have ICU on standby. It doesn't make sense, the system doesn't make sense. Surely someone has the authority to get you on the list. Keep fighting and stay strong! x

[SeaHorse6]

Hi maestrogirl-79, I also just want to send hugs & say it is really awful that you haven't had more help from the NHS, and have been left with such life altering symptoms :(. I don't know if it's much help but just to let you know that there are NHS hospitals where you can have surgery as a private patient (so there's an ICU on hand if needed). I had a laparoscopy for endo at Portsmouth QA NHS hospital as a private patient. I feel angry for you as you should be having surgery for free and asap! xx