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Endometriosis UK
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Post Cystoscopy Excruciating pain and swelling.

So since I had my cystoscopy yesterday I have had the most EXCRUCIATING, mind numbing pain ive ever felt. To even try to wee feels like a million shards of glass is being forced up my urethra. It feels like it's going to explode with the pain. I've taken an amitriptyline, paracetamol earlier today, a Solifenacin, 2 codeine and have permenantly had a hot water bottle as well as having had 3 baths. Nothing has taken even 1% of the pain away and since I've had terrible abdomen pain which is so sore. In physically can't even go to the toilet to wee- despite my bladder feeling fit to burst because the pain is so much I can't breathe and start hyperventilating. I thought I was a pretty tough cookie but obviously not.

I'm a size 12-14 due to weight gain with my polycystic ovaries but even my size 14 elasticated waist trousers won't fit And my stomach- especially my abdomen has swollen up so much I actually look like I'm a full term pregnant woman. My period just started again too and the blood is black so I've no idea what that means. I've tried to call the central treatment suite where I was seen earlier but it must have been closed as both numbers rang off.

I don't even want to entertain a and e as I know they make you wait hours and hours and for usually nothing. I'm going to try to get an emergency docs appointment in the morning to see my gp. Has anyone else had this swelling? I usually have bloating with my endometriosis but never like this with the abdomen cramps.

What should I do :(?

I'm so tired and in pain and just at a complete loss :'(

13 Replies
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I can't offer advice as I've not been through any procedures yet, but just wanted to send a big hug, you poor thing it sounds awful :( xx

I do get bloating every month with my periods, very painful and I can't stand anything touching my stomach at all, so I get that though.

Having recently had a procedure though, I would definitely try and get to see someone ASAP if you can, either emergency GP or a&e if you can, just in case.

Xx

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Hi,

I totally understand what you are going through.nbig hugs to you. I went through all that pain after my cystoscopy last year. No pain killers worked at all, all i could do was cry. GP gave me pain killers it didn't touch the pain at all. Went to the hospital which turned out to be a waste of time. I was told to drink hot drinks likes peppermint tea, hot water. I couldn't handle going for a wee. I was actually thinking of ending my life I was that bad.

Hopefully your GP maybe able to help you with your pain.

Did they tell you if they found anything? And when you're next check up is at the hospital?

Sweety

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Hi. I suffer with endo but am also a nurse/midwife. It sounds as though you probably have some urinary retention and I think it's really important that you are seen by a doctor otherwise you could damage your bladder if it becomes too full. Please make sure that you see a doctor today. Urine infections are quite common after having a cystoscopy and can cause retention but it's something that can be sorted out easily so don't worry. Really hope that you get it sorted out and are feeling better soon. Let us know how you get on. Sending you hugs. X

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Ouch that sounds terrible, my cystoscopy was rubbish, I was in agony just tried to sleep through it, see a doctor as soon as you can and lots of cranberry tablets! Hope you feel better soon!

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Please get an urgent appointment or go to a&e. I had a hysteroscopy to remove a polyp last may, routine 20min appiontment with a very slim chance of infection or so they told me within 24 hours i was doubled up in pain similar to what you are experiencing went to doctors he told me cant be an infection its too rare and sent me home with medication for a water infection a week later still in pain and not even able to get out of bed without help i went back to doctors they still said i had no infection and because i didnt have a discharge or bleeding after the hysteroscopy it was unlikley that and again sent me home witj tablets for a water infection long story short took myself to a&e a few days later and they found a abcess on my fallopian tube because i hadnt been given the correct antibiotics to treat the infection caused by the procedure. PLEASE get it checked out. The signs to look out for are a high temp, shivers, pain, bloated abdomen,unpleasant discharge, bleeding you may think its your period starting early. Painkillers dont even touch the pain. I didnt get the high temp and shivers though till the abcess was well advanced.Hope everything goes well and you feel well soon

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I booked an emergency appointment with another gp from the practice as my gp wasn't available. I went in and explained the pain and the swelling and was in tears telling him that I feel like no one really helps me- to which he got quite arsey and started to say things like "if no one was helping you, you wouldn't referred" to which I was just like "I get referred, and fobbed off to someone else who does nothing for me and it goes on and on" he got pretty shitty towards the end. It was as if he just didn't think that anything was wrong with me and so he just gave me the minimum pain relief he could physically give me, he just pressed on my giant swollen stomach, said it was just due to having had a procedure and sent me away with a prescription for tramadol. Spent most of yesterday crying. And SURPRISE SURPRISE the tramadol doesn't work!

I've got a gynecologist appointment on the 7th so I'm hoping to have some more luck from that if nothing else :(

Thankyou for all the lovely message of support and advice. I did take it-it just seems I'm not taken seriously no matter what I do.

X

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It's sooo frustrating how we're not taken seriously .. I mean it's our health we have to live with our symptoms every day. Sending you big hugs.. And hope you feel better soon xx

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I'm so sorry that you got fobbed off. It really makes me angry that people who are in the job to care for people just don't care at all. I really hope it gets sorted out for you soon. Thinking of you xx

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I'm about to have a cystoscopy with dilation & biopsy by a surgeon urologist...am just wondering how you've been getting on ...what happened after you saw your gyn again?

I hope you recovered and are ok now? And I'd be v grateful for any advice you can give me...

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Hi hun

Any updates on how you felt after a few more days? Did your pain ease at all? I had cystoscopy hydrodistention and biopsies taken on Wednesday and not feeling good at all. Stomach really swollen and I'm bleeding and very sore. Any advice would be fab x

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Hi Emma!

If i'm totally honest I felt terrible for weeks! The pain was so awful that I went to my gp and begged him for better painkillers! I started taking tramadol but it didn't overly help. Luckily the pain did stop after a couple of weeks and I was taking Solifenacin- which is a urinary tablet which really really helped and was amazing. I kept a hot water bottle between my legs wrapped in a towel and continuously took pain killers. Try to limit too much movement and walking as this seemed to make it worse! Id also advise just drinking water or squash as other types of drinks tended to make my urinating even worse!

Hoping you feel a million times better my love!

Feel free to check out my blog!

theendoartist.blogspot.co.uk

X

Jordan

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Thanks for the advice sweetie. Things us girls have to go through. Gonna have a read of your blog now xx

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You're welcome! I hope everything goes a ok for you and that you feel much better soon!

Thankyou for taking the time to have a nosey at my blog!

X

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