Tips on getting NHS to listen?: My... - Endometriosis UK

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Tips on getting NHS to listen?

My beautiful niece and mum to two toddlers (after many painful trials) is having the most horrendous experience right now at the local hospital. I don't want to share the details on her behalf but I am truly shocked at what amounts to neglect and outright cruelty on the part of the NHS and some of the professionals individually. I am asking you for any tips on making sure we support her to get the best care possible - and that DOESN'T mean yet more high-strength drugs to mess with her physically and mentally. Are there any experts in patient advocacy who could help us? I really do wonder if my niece was in a higher socio-economic group, things would be different. Or is it even worse than that and just systematically a case of WOMEN being let down comprehensively by the system?

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I would get in touch with Patient advice and liaison services (PALS) services at your local hospital, they can be found here:

nhs.uk/chq/pages/1082.aspx?...

You can ask their advice and they can also help you with making a complaint etc. I have used them and they have been a great help. Hope this helps.

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Big thx. My niece has joined this group (all new to her) and am sure she will gain strength from being in touch with all you amazing women. She is not alone, right? X

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It might also be worth letting her know about the Endo helpline endometriosis-uk.org/get-su...

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Hi there, thx so much. She has joined this group and it will make a real difference, am sure. It has also helped me: desperately wanting to help and no idea how. Well, all of you are really helping ME, too. X

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I hear you. Took me a year to get anyone to listen first time round. Because my mum had just passed away from cancer, and mentally I wasn’t exactly tip-top from that, every GP I saw put what I was feeling down to stress, muscle tension, and that I was in a vicious cycle of anxiety and really it was all in my head. I persevered and got them to scan me, but it showed nothing. So frustrating. Still, I kept going back weekly, and eventually they referred me to a gynae consultant. He did a laparoscopy and lo and behold, endo on my uterus and abdominal ligaments!! I was pain free for 4 months and then, wham, such pain i ended up in hospital on morphine, again nothing on the scan but the gynae ward said they think most likely is the endo has come back. Problem is they can’t refer me, has to be my GP. And guess what, I’m fighting to get a referral again! Dreadful.

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This is my lovely Aunts post. I am the lady in question.

I too have MH issues. They tried hard on my admission to put it down to that. They tried every avenue they could, was there stress at home? Do I have money troubles or worries. I laughed and said as much as the next person. There is nothing physiological about the pain I'm experiencing. I mean she tried everything to make me feel I was being silly. Which I couldn't take no more. In the end she had to admit me (I won't go in to details about the absolute nightmare I experienced in between! It's honestly worthy of a trigger warning. Absolutely horrible.)

After being admitted my scan was brought forward 6-8 weeks because I had one the very next morning (yesterday) they confirmed PCOS (which I was already fully aware of) and have told me to phone my gynea reception Monday along with my Aunt and book the lap and hysterocopy.

Back story I have PCOS, Vulvodynia, questionable endo, questionable polyps or fibroids and I have received the LLETZ for CIN3 back in 2015.

I am currently taking for this.

Pregab 25mg to go upto to 50mg on Monday once in the morning, once at night.

Cocodamol 30mg x2

Four times a day.

Mini pill and contraceptive implant.

Thank you for your reply. I appreciate it so much.

Xx

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Kerry, I am genuinely shocked at what I am discovering. It feels actually sexist in nature,regardless of the gender of the clinician. It is outrageous. I feel you will have the resilience to keep on but I truly hope your GP wakes up and remembers their Hippocratic Oath. What is WRONG with the system that women like you are not believed and treated so cruelly? X

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I think doctors can honestly be horrendous at times and not even realise it. For years I was dismissed because one consultant felt I just didn’t want to be in school and was looking for a bit of time off. It took 9 years for me to get a consultant to do more than a quick scan and look for the cause of the pain. That wasn’t done properly so, almost a year later, I’m still back at square one, partly due to a whole host of hospital errors while being in A&E. I’m at the stage of writing an absolute essay of a complaints letter and still not convinced they’re gonna do anything about it.

I think a lot of doctors should be taught to have actual people skills. I get that they need to switch off their emotions to an extent in order to think logically and clinically but there’s a difference between that and just treating people like a number on a sheet of paper that they can’t be bothered dealing with.

It’s a horrible situation to be in but please remember you’re not alone and it’s not a personal thing against you (although it often feels like it is) x

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Thank you so so much. I have been dealing g with this since 17. Fobbed off with all different things. Like you because I was young they said to me it was normal and I just had bad periods. After investigations because I couldn't conceive they decided I must have endo also. No investigation. Just left. Then I went on to have two difficult births my pregnancies had that many complications it was so upsetting. I've been bleeding for 2 or 3 months now. Given tranexamic acid and bees stopped. Went to my gynea appointment my dr had arranged. (my dr is also a gynea. He diagnosed the Vulvadynia and decided there was more going on because of the bleed) after two hour wait he seeb me and told me my implant wasn't working and was in the wrong place and to go to the sexual health clinic asap. So the following morning I was there at 9am. The nurse there told me he was talking absolute rubbish. My implant is in a lovely place (easy for removal) and this was endo and I needed another hormone to balance me out. So now I'm on the mini pill and no tranexamic acid. So for last couple of weeks I've done nothing but bleed. (My Dr said it could take upto 3 months for bleed to stop when I spoke to him) I'm now on pregablin and cocodamol for it. Just can't wait although I'm scared to just have these ops. Once it's there in front of them surely they will eat there words and do something. Although I'm not holding my breath. I'm very lucky my Aunt is very well spoken and intelligent so she's been great in backing me, my mother in law also has made me push for this and is very supportive. They have both tried reassuring me I'm doing the right thing and I'm actually just being treated appalling again! But I do feel so bad. It's invisible and trying to explain to 15 different doctors the pains and sensations becomes tedious because you can just see its not important to them. Thank you so much for your reassurance. It means so much to feel not alone. Xxxx

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I know how you feel. There have been so many times that I’ve honestly just felt fed up and tired of having to try and convince doctors that actually, no it is not normal to just always be in pain. When they left me with no follow up appt after my lap after having found scar tissue and adhesions sticking my organs together but denied it was Endo (with no other explanation) I was so confused and disheartened that they didn’t even seem to want to find out what was happening. So I think it’s brilliant that you have people around you who are helping you with it. I’m lucky in that respect too, I’ve got a lot of support around me and people to help me keep pushing to get seen or be heard. Not that we should need to though!

Anytime you need to talk or rant or anything, feel free to pm me too xx

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Thank you Dee11.

It is so sad to think that we have to beg to be heard and everything we say is put down to another issue or another load of test for a new condition instead of just treating what we all have known for years!

I haven't ever pushed this hard but I've recently received a lot of support & family pushing me to not keep accepting yet another med or bogus illness and actually push for them to treat the real cause.

I am finding it very tough emotionally but it' just all the doubt and unknowing.

Have you found out what on earth is going on yet or no? I am so so sorry you too are having to go through such a rubbish time.

Thank you for that, it means alot and I most certainly will take you up on the rant at some point I'm sure 🙈

Thank you so much xx

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Aw no problem, I think we all need a bit of a rant at times! Sometimes just knowing there’s someone going through the same kind of thing at the same time as you gives you a bit of reassurance too.

I have no idea what it is, but thankfully I have an appt with a different consultant tomorrow who I first saw privately and I think he’s going to be great for me, fingers crossed! Have you got anything coming up, any appts or anything? xxx

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Oh good luck I really hope it all goes well for you!

We have to phone my gynaecologist on Monday to book both a Laparoscopy and hystreoscopy so hopefully that will be booked in relatively soon but I'm not holding my breath. I also have to call the pain management team at the hospital? Which is all new to me it's always been my Dr wgo i have gone to regrading the pain.

Good luck tomorrow xx

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Pals ad others have said are normally great at helping. Ive used them several times.

Also being persistent helps.

I also feel women are often dismissed as being drama queens whatever their social background and we have to fight more.

Ive found being on here really helpful as I no longer feel either alone or Im just been a wimp the pain is real and needs sorting.

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