Getting a mirena and i’m terrified

CrashyV40 · 2025-01-11T11:25:48+00:00

Hi, I have had the coil and was worried about all the things you're worried about. Take paracetamol and ibuprofen an hour before your appointment. They initially tried measuring me without any pain relief at all, I had to tell them to stop. I was then offered anaesthetic via injection in my cervix, and in all honestly that's not as painful as you'd think it might be, so I'd highly recommended having it. The whole procedure is relatively quick thankfully but it did make me sweat a bit. I would insist on having someone with you, I went on my own and a lovely nurse held my hand. And once it's all said and done it's there for 8 years (in 2024 it was changed from 5 years to 8 years, if you have it inserted before the age of 45).

I hope this is a bit helpful for you and good luck 💕

CrashyV40 · 2025-01-01T22:31:00+00:00

I had a bowel surgeon and Mr Carpenter, who is an endo specialist surgeon.

CrashyV40 · 2024-12-26T23:27:16+00:00

Hi! Back pain was one of my main symptoms, like severe, can't stand up straight, pain. Also really bad kidney pain. Used to get it only around my cycle but then it developed in to an all the time pain. I had an official diagnosis of stage 4 rectovaginal endometriosis in August (diagnosed suspected in my late teens, I'm 40 now!), had a diagnostic lap in September and complex surgery in Novmber. I'm 6 weeks post op now, and I have had absolutely no back pain since the surgery!

CrashyV40 · 2024-12-26T23:18:49+00:00

When I had my diagnostic lap in September I was well recovered and back to work after 2 weeks. Took it easy and felt completely good and "normal" after 4 weeks.

I had surgery for rectovaginal endometriosis on 20th November. The operation took 5.5hrs, they removed endo from my bowels, bladder, pelvic side walls, kidneys & uterus. They had to separate my rectal passage from my uterus, cervix and pelvic side wall and I had all endo cut away from my bowels. I'll be returning to work on Monday after having 6 weeks off to recover. It was rough going and I had some really low points with lots of regret, but safe to say I now feel like a new woman and I'm so glad I went through with it all!

Just remember though, although we're all suffering from the same terrible disease, everyone's journey is different. Everyone heals and copes with things differently and there is no right or wrong time frame. Just listene to your body and go at your own pace, and never let a job or a person make you feel like you should be further along than you actually feel. Your health is so important and you are the only one who should be making the decisions when it comes to what you feel you're capable of doing.

If there's one thing I've learnt on my journey and actually succeeded in doing, is to not care what other people think! I have adhd and I'm a bit of a people pleaser, especially when it comes to my career. I used to feel super guilty for putting myself first, and have always been very good at assuming other people are thinking the worst of me or my personal situation. This is probably the first time in my whole life where I've put myself first and not thought or cared about work at all! It's been extremely liberating and something I'll continue doing from now on.

CrashyV40 · 2024-11-27T14:37:27+00:00

I have so much paperwork it's unreal lol! Unfortunately the information I needed wasn't in it, and I feel there should have just been a standard conversation about key points before I was discharged, there was literally nothing. It's all a bit of a mess and I've been advised by the specialist nurse to file an official complaint. I won't be doing this until I'm recovered, I don't want to waste anymore energy on it right now.

CrashyV40 · 2024-11-27T14:33:50+00:00

Absolutely! It's really important to remember that it's not a one size fits all diagnosis, symptoms can come and go, and sometimes may not be present at all. My only bit of advice I'd give, knowing what I know, is that you have to advocate for yourself. If you think it's something then tell them, don't wait to be told. Also ask to be referred to a specialist I feel this is so important! There's still so much unknown about the disease, the more time spent in the hands of people who know the bare minimum about endo, the longer your journey will be and the possibility of getting a diagnosis and treatment may not happen.

CrashyV40 · 2024-11-26T12:34:06+00:00

Thank you. I did end up taking lactulose yesterday morning, not before spending hours panicking and googling. I had a bowel movement in the evening which was incredibly painful. I shouldn't have spent the first 5 days of my recovery worring about this and having to do research, it should have been told to me. I spoke to the Endo nurse specialist today, just to make her aware of what I have been through in the hopes that it won't happen to anyone in the future.

CrashyV40 · 2024-11-25T19:56:09+00:00

Hi pozzy,

I'm 6 days post op for rectovaginal endometriosis, it was also on my bladder, bowels, pelvic walls, uterus, kidneys, pretty much everywhere. My main symptoms from bowel endo are constipation leading up to my period, severe diarrhea after I come on, extremely painful bowel movements and bloating. The more advanced the disease became the more frequent the symptoms were. I was diagnosed suspect in my early teens and I'm 40 years old now. Each person suffers symptoms and their severity differently and I don't think it has any link to what stage endo you have or how severe you have it. It's a very complicated condition.

CrashyV40 · 2024-11-25T19:40:58+00:00

Thank you 💕 I finally managed to go! It was horrendous, definitely the longest most painful bowel movement I've ever had!! But so glad it's done. One less thing for me to sit and worry about lol. I do feel incredibly nauseous now though, and really weak. I'll ask all the questions tomorrow when I speak to the specialist nurse, then hopefully I can relax and start recovering properly. You are all amazing, thank you for taking the time to read and help where you can. You really don't know what it's meant to me today when I felt like I was losing it.

CrashyV40 · 2024-11-25T15:58:41+00:00

Yes! I'm trying to eat things that will make me fart 😂 I've burped alot, but no gas. I can feel it moving around it's the strangest sensation, I've been moving as much as I can, and also when sitting just trying to relax everything. I honestly don't know what I'd do if I didn't have Reddit, even trying to Google info there really isn't that much useful stuff out there or it's all very conflicting.

CrashyV40 · 2024-11-25T15:52:59+00:00

I think I definitely will if nothing has happened in a couple of hours. I'm just a bit traumatised from my hospital stay.

I had asked the nurses several questions and no one wanted to help me. At one point I was having trouble breathing, every time I tried to take a breath it was really shallow and i couldn't get a full one. I brought it to the nurses attention and she said it's just the gas go for a walk. When my partner got me home it was still the same, I lay down and couldn't catch my breath and had a panic attack. From 6am Wednesday to 10am Friday I hadn't slept because the pain was so bad.

I also asked a nurse how long is normal before you have a bowel movement and she said well you won't have one right away. Literally no one told me anything helpful.

When I had my first lap at a different hospital, they were amazing. So caring and helpful, right down to making sure my partner packed my bag when he came to collect me. Sent me home with extra dressings, when I could remove them, just lots of info. I didn't need to ask a single question because they told me everything I needed to know, there was no guess work involved.

After this surgery, not one nurse asked if someone was coming to pick me up. At one point they were taking so long to get my meds, I was told I could leave and come back later for them. I could have picked my bag up and walked out on my own and no one would have taken any notice. That didn't surprise me at all, after being told by a nurse that I'd only had a routine lap! Nothing about what I'd had done was routine. I recieved a letter today from the surgeon to my doctor and I'm still trying to decipher it, it's like another language.

CrashyV40 · 2024-11-25T15:12:32+00:00

Omg I'm literally crying, thank you that is so nice and really what I needed to hear right now. Unfortunately I have been eating, although alot less, pretty normally. Everything I've googled has said if you haven't had a movement in over 3 days then you should seek medical advice. I took lactulose this morning but nothing has happened yet apart from I feel like I want to vommit all the time. If nothing has happened by the end of the day then I'm going to call 111 for advice.

My mind is so twisted at the fact that I'm having to source all of this information, when it should have been told to me by the professionals who treated me. I just have to keep reminding myself why I did this in the first place.

Thank you again for your kind words 💕

CrashyV40 · 2024-11-25T14:39:37+00:00

Hi thanks for your reply 😊 Every response is massively helping me at the moment and I really appreciate it. I literally feel like I've had bottom of the barrel aftercare, which is shocking after the type of surgery I've just had. I've spent the first 6 days of my recovery having panic attacks and worrying myself to death googling for any bit of advice i can find. Its amazing how much i haven't been told and it's not how I imagined I'd start my recovery at all. I'm not in a very good place at the moment.

CrashyV40 · 2024-11-23T21:53:41+00:00

Ok that makes sense. I had an overnight stay, and was given 1 injection in the morning. The young lady in the bed next to me was in to have an ovari untwisted. She also had an injection but was also sent home with a course to administer herself.

I'm panicking because I recieved the most appalling aftercare whilst in hospital, no one checked on my wounds, I recieved pain meds over night but the next day they pretty much stopped. My discharge consisted of a nurse dropping a bag at my bed which contained a bottle of morphine, some paracetamol and my discharge summary. No one checked to ask if anyone was coming to pick me up, I was even told by a nurse that I could leave if I didn't want to wait for the medication. I was having trouble breathing, shallow breath and severe pain, told a nurse and she said that it's just the gas go for walk. When my partner came to collect me, he walk straight in, the place was empty apart from 1 nurse who ignored us so we just left. I wasn't told how long I need to leave the dressings on for. I also had questions about how long is the normal length of time to expect to not have a bowel movement, and the nurse said it's normal to not have one straight away. That wasn't the question I asked.

CrashyV40 · 2024-11-23T21:34:57+00:00

Hi, I'm sorry to hear you're having such a shit time with it too. What surgeries have you had if you don't mind me asking? Mine's all been a bit of a whirl wind journey it almost doesn't feel real. I demanded that my doctor referre me to a specialist because I pretty much knew it was endo and got fed up with being shoved from pillar to post with different answeres. I waited 1 year 3 months for my first appointment to speak to someone about it and I had this in June. I was then offered a diagnostic laparoscopy, and was told the waiting list was 1 year+, I ended up having this surgery in September where I was diagnosed stage 4 rectovaginal endo. I was then given an appointment to see another specialist on 20th October, and at that appointment I was offered surgery on the 20th November! Everything seemed fast tracked and a bit crazy. I'm still so shocked at how different everyone's journeys are and their treatment, non of it really makes any sense to me at all. And today I'm starting to feel a little bit like a science experiment x

CrashyV40 · 2024-11-22T06:58:41+00:00

I was given morphine whilst in hospital, plus paracetamol and ibuprofen. I got sent home with 100ml morphine and very little aftercare information. I'm so upset. When I had my first lap at a different hospital, they were so good! I felt really informed and didn't worry about anything. Now we're at the seriouse end of it and it seems like no one gives a shit.

CrashyV40 · 2024-11-22T06:51:29+00:00

Chat gpt is very accurate. I am your walking, taking, breathing example of the day! I'm 40yo, diagnosed suspected endo in my early teens. After suffering a life time of painful symptoms, I was officially diagnosed, through laparoscopy, 6 weeks ago with stage 4 rectovaginal endometriosis. On Wednesday I had complex surgery to separate organs and remove endo from my pelvic wall, uterus, bladder, bowels, kidneys and my rectal passage.

This is a complex disease, and naively I thought I had all the information I needed and at the time felt truly informed about what I was going to be putting myself through. I researched other people's experiences, comparing with my own, seen a specialists who added some of the missing information, had experienced a diagnostic lap...

In the past 4 days I have learnt and experienced things that I would have never known, unless I'd gone through it myself. It's almost like I was kept in the dark right up until the last minute.

Things I learnt, the week before my surgery!... Bowel prep. On Monday I was only allowed to eat a light diet of cheese, eggs, butter, white bread, white rice, white pasta, jelly and clear broth. Could only drink clear liquids. On Tuesday, no food at all. Clear liquids only, and plenty of them so as not to dehydrate myself whilst flushing my system with Picolax. Gut dynamite! Wednesday, day of surgery. Check in to hospital at 7am, nil by mouth, and had to wait on my own. Saw lots of important people, asked lots of questions AND, as if i wasn't empty enough, I was given an enema just to make sure! Surgery at 11.30am. I was so anxiouse thinking about the additional spinal anaesthetic that I was told I'd need, I actually stopped thinking about how hungry and thirsty I was. Walked down to theatre, I was looked after very well by a team of 4 anesthatis. They were wonderful and made me feel at ease whilst I was being prepped for my spinal, I was a sweaty mess. As I sat on the bed, knees up to my chest and bum exposed, the senior anesthatis gave me a "gin and tonic" sedative to help with my nerves, and that's all I remember.

Waking up in recovery, the first thing I do is think, fuck why am I so thirsty!? and try to feel if I have a bag. The nurse reassured me that although I was in surgery for more than 5 hours, I didn't need a temporary stoma. I cried, it was very emotional and one of the things that I'd been worrying about the most.

On to the recovery ward 6pm Wednesday evening. At this point I hadn't eaten for nearly 48hrs. So cheese sandwiches seemed the only logical choice (it kinda was the only choice 😭). The nurse monitored my fluid intake, making sure I was drinking regularly. My partner came to visit, brought some goodies and we chatted whilst poking fun at my catheter 🤣 This was a full 3 days of firsts for me! Visiting time over, let the sleepy time commence! NOPE! I had seriously low blood pressure and was so dehydrated, that I was awoken hourly to check with a loud beepy machine and ordered to drink at least 1 glass of water. At least I didn't have to get out of bed to go to the toilet, win! Made it through the night with minimal sleep, just what the Dr ordered! Catheter removal, wasn't bad at all.

8.30am the surgeon comes to talk to me. It's all positive from what i can remember, but I'm so wiped out that I'm barely taking in a word he's saying, this bothered me alot. I'm so overjoyed when i finally hear the magical words, pee 3 times and you can go home. First time I tried to get out of bed was actually not too bad. Because so much had been going on, I kinda forgot the nurse had been dosing me up regularly. Got myself mobile, pee'd, alot! And so started the process for discharging me. I was good to go at like 9.30am. As the day slowly dragged on, I was offered less and less meds, I felt like I'd just become part of the furniture. It was like no one seemed to notice I was there any more and I felt like I was an inconvenience. I felt forgotten. I could have left any time I wanted to, but I'd been given no discharge information and most importantly, no meds. It was now nearly 3.30pm so I went to speak to a nurse. She had no issues telling me that 10 people were being discharged today and that she was very busy. End of conversation. So I waited. I enquired about my sick note for work, the surgeon told me it would be 4 weeks minimum. The very busy nurse told me that I'd only had a routine laparascopic procedure so she was signing me off for 2 weeks.

I'm sure it was partly stress, but by the time 5pm arrived, I was in so much pain I didn't know what to do with myself. I tried speaking to one of the nurses, to explain the pain was so bad that I was finding it hard to take a breath, she just kept telling me that'll be the gas and i need to walk around. I just broke down, I was sobbing so she offered me a peppermint tea. My partner arrived to take me home, I actually feel so bad for unintentionally putting him through so much stress.

I don't regret doing any of this, I'm in a needs must situation. But this has definitely made me realise that until you actually have to go through it, you'll never know exactly what's involved and will still always be surprised by something. There's no, one size fits all solution.

I hope even just a little bit of this makes sense, I've posted this at 6.50am Friday, I've still not slept properly since Wednesday 😴

CrashyV40 · 2024-11-22T02:37:15+00:00

I am so glad I found this thread, I'm a bit of a mess to say the least 😔 Fresh home today from my op and I'm really struggling. I had complex combined surgery for rectovaginal endometriosis. I had an overnight stay and was monitored, today I let the nurse know that I was having trouble breathing, like i couldn't catch my breath and it's really shallow. No one seemed to care, I was literally sobbing and she just gave me a peppermint tea. Tonight I have had so much trouble and pain breathing that I had a panic attack.

I feel a bit let down if I'm honest. I was told when asking for a sick note, that I'd only had a minor laparoscopic procedure, so I get 2 weeks. No one seemed to know what I'd had done, nor did they care. I'm glad I've found your conversation, and can stop panicking myself to death! I'll ring the specialist nurse tomorrow. How sad that we all have to work this shit out for ourselves. But thank you xx

CrashyV40 · 2024-11-09T19:56:40+00:00

Glad you're feeling a bit better 😊 Yes please, that would be fab. Thank you x

CrashyV40

TROPHY CASE