Hospital Pain management : Hello ladies... - Endometriosis UK

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Hospital Pain management

EndofEndo18
EndofEndo18
21 Replies

Hello ladies,

I was admitted 3 days ago with severe pain and bleeding (period wasn’t due for another wk). I had the Zoladex injection and started on Tibolone 6 days before. They thought it may be a Zoladex flare, but still unsure. My Hb went down to 88 and they suggested a blood transfusion. I was losing lots of clots and feeling dizzy. Of course I want this to be sorted and the pain to be investigated, however the patronising nurses make me want to go home.

I have had all natural births and lived with endo pain for a long time. Pain is my normal. On Wednesday yes it was more but because my BP is low they don’t believe I’m in pain. My temp is 35.1 and apparently that’s fine but I’m cold. So when they give me painkillers they are very “here you go” but to other patients they are attentive. They make me feel like I’m wasting their time. I said I find it difficult urinating and they said turn on the tap. I told them I did and they said drink more. I feel like I should just discharge myself and go home :(

I’m very polite, don’t press my buzzer except for once. I just don’t understand...

21 Replies
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Tillyfloss

hi. How are you feeling? Have they got on top of the pain? I've experienced very unsympathetic medical staff and it makes you feel awful, I've had doctors in a&e ask me to explain what endometriosis is, nurses saying its just bad period ache and what's with passing out. I did come across some lovely ones to but it wasn't till I got into an bsge centre that the staff were much more understanding. You could go to pals about it as it is unacceptable to dismiss peoples pain. You are in pain and you need help, if there is a doctor you find ok, ask to speak to them and say the nursing staff are being very dissimve and it might help, I complained about having to wait upto 4 hours for medication when I was there for pain management and it did improve after a a quiet word. Ask to see the pain team whilst you are in as they can help manage the pain going forward. Stay strong you have a disease that is very debilitating and they should be being more supportive. Xx

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EndofEndo18

Thankfully the consultant came down and everything changed everything. Had a blood transfusion because it dropped lower and now on top of pain. I wrote a feedback card too. It seems so unreasonable to have people working on a specific ward without background knowledge of the diseases they treat. I’m hopeful things will be better from here on. Thank you for replying, if things go downhill I will be going to pals. Xx

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Tillyfloss

m so pleased it's improved, consultants can really help especially if they are old school. Good luck I hope they can get you to a more comfortable place. Xx

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AllthatGlitters

Hello were you in the gynae Ward?

That’s awful you were meant to feel like that. Clearly they don’t have any gynae issues otherwise they would show more compassion and understanding.

Hope you feel better soon.

I agree you should contact PALS. X

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EndofEndo18

Yep in gynae. This evening the same nurses are on. One had the audacity to tell me they were laughing at me yesterday when I was worried about not being able to pass urine. Upon scanning me and finding I had only 180ml i only needed to drink more water. I’m not a machine, I felt like I wanted to go and couldn’t that’s all I knew at the time. I have to come back here for a hysterectomy and dreading it now. Don’t even want to ask for my painkillers tonight :( xx

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AllthatGlitters

I would definitely be putting a complaint in for that comment x

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EndofEndo18

I’m reluctant because I know I’ll be back here soon for my hysterectomy xx

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EndofEndo18

I spoke to the nurse in question and just couldn’t keep quiet. I basically explained it how it was. She was totally different...I’m sure she’ll bitch about me after, but at least I put it straight for other patients without being offensive or confrontational. Sometimes you just have to let the people who make you feel upset others carry the weight of their words.

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Meerkatcrazy

Hi. I'm glad you are starting to feel better and had the courageto confront one of the nurses. The way you have been treated is unacceptable. I was a health professional for over 20 yrs and have worked colleagues who are unsympathetic. You should speak to PALS and even consider another hospital for hysterectomy if it will help reduce anxiety about the impending op. A low BP is a sign of blood loss and does NOT mean that a patient is not in pain. A temp of 35.1 is also not normal. I know the pressures that nursing staff are under - 1st hand - but they are in the wrong job if they are making you feel bad for being there. Take care and hope you are home soon. X

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EndofEndo18

Thank you meerkatcrazy, I’m feeling better apart from pain and still a bit weak but better than before. Thank you for your reply, I never considered another hospital and will suggest that. Funny you said about BP as it is better this morning. Thank you again xx

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Meerkatcrazy

That sounds positive. Endo really is the pits!! Im currently laid up with period endo pain - but Ive had it worse so its not too bad. Hope you get out soon. Check out the endo specialists website and ask your gp to refer you to one for your hysterectomy if possible. I asked for a referral to gynae for endo investigations (previously diagnosed clinically about 6 yrs ago) and purely by chance, I chose the hospital with shortest waiting list and ended up seeing the endo specialist for my area! Could have ended up with any gynaecologist. 😊 Hope you are home soon x

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IndigoMoon1234

Good morning

You are not alone. The nurse who performed tests on me last week said that the only people who understand what she is going through are other endo sufferers. Her pain gets so bad she faints and throws up. She said doctors sometimes just dismiss her - even though she is a medical professional.

Only you know how bad you feel. Don't let others make you feel worse.

Best of luck with your treatment.

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EndofEndo18

Thank you. Same nurse on tonight. Said hello to everyone but me ha. It’s ok I’ll be going home tomorrow if my levels are still good xx

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tiger-cub

I’m so sorry that u were made to feel this way . But u do agree with others here that if they are unsympathetic.

As a fellow endo sufferer do understand ur suffering. But I would strongly recommend u get ur self referred to a BSGE center near you. They are much more efficient and understanding. I wouldn’t get any procedure done in a place like this . And write a official letter to PALS about ur experience. Also when I had excessive bleeding like urself they needed to give you tranexamic acid which not only helps with the pain but also helps reduce d bleeding . U can also ask ur gp to prescribe u some .

Do feel free to message me .

Hope u feel better soon

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EndofEndo18

I look that up thank you! Never heard of it. I’m on the tranexamic acid but have to stop soon as it’s been 5 days xx

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Marie2377

Makes me angry reading your message. I am really sorry you’re going through this. Yes pain does become the norm and living with all kinds of problems but it’s not ok. It’s not normal to live in pain. Hope you feel better and get the right help x

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EndofEndo18

Thank you xx

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Pjkvrk65

I had Endo from young age, I’m now 70. Back when I was diagnosed nobody (only sufferers) new what it was , I was treated like a hypercondriact by many G.Ps also after having my son at 32, post natal depression, tried every pill & Potion nothing eased it, I had a hysterectomy at 49, a relief for a while but then they called it IBS still suffering very similar pain without the period !!!! Thought by now they would of had a cure, good luck ladies I hope they can help you all find something to if not cure help you with pain

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EndofEndo18

I’m so sorry you had to go through it alone. Hopefully with more research we will end this awful condition. Thank you for your kind words xx

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