Can’t deal with this pain anymore. No fig... - Endometriosis UK

Endometriosis UK

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Can’t deal with this pain anymore. No fight left

leah_0600
leah_0600

Last Monday I rang 999 and I got taken into A&E. Lower abdominal pain with vomiting. The pain was excruciating I couldn’t speak and was writhing around on the floor. Blood tests came back fine. No examinations and got sent home straight away with ‘IBS’.

Tuesday and no better, pain was the same so went back and was admitted. Scan showed a simple 2cm ovarian cyst but nothing else. Sent me home straight after with morphine?!?!

Friday I couldnt cope anymore and got an emergency GP appointment. He took one look at me and sent a letter to A&E and sent me back to hospital. They discharged me straight away stating ‘there’s nothing we can do for you’

I wasn’t giving up. Sunday I went to a neighbouring hospital who got me seen straight away in A&E. Spent 15 hours in the EMCU and was transferred by taxi to the sister hospital on the gynae ward. Another ultrasound and TV showed the same- a 2cm cyst but they said they couldn’t tell whether it was simple or not.

By this point I hadn’t eaten anything since Monday.

They said ‘we don’t want to operate without your notes, as we don’t know what we’re dealing with’ (I previously have had a laparoscopy that converted into a laparotomy with a large endometrioma twisted around my Fallopian tube) I still don’t know why it was turned into a laparotomy I’m convinced they did something bad and have lied on the discharge notes saying ‘no complications’ and not even mentioning the removal of my tube!!! They also said ‘what happened to make it a laparotomy which organ did they perforate for that to happen?’ They are definitely covering something up!

Anyway got a bit off track there- the neighboring hospital basically offered me surgery but gave me loads of reason not and said if you’re no better in a week you can come back and we’ll scan you again and we ‘ll request your notes from chesterfield hospital.

No notes came. Chesterfield are either refusing to send my notes or are hiding something! They (for good reasons) can’t operate without them.

So right now I’m at home in bed debating whether to ring the ward up as my husband says i’ll Still be in the same pain but bored in hospital.

I also have a private consultation with an endo specialist on Tuesday (if I don’t have my lap by then) so I’m hoping to get things moving that way too.

Thanks for listening to me ramble an if you have any advice for me I’d greatly appreciate it.

NB once I am better I am putting in a complaint to PALS about the way chesterfield hospital have treated me and the lack of communication between the two hospitals resulting in my lap being stalled. This will be the second time I’ve had to contact PAlS about this hospital and the last time resulted in a locum being struck off because I was treated so badly!

15 Replies
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Sounds awful what you have been through and very scary that you keep getting sent home when it’s been clear the pain you are in. Are you a little better now? X

Thanks for your comment lovely. No the pain is still the same unfortunately. No worse though. I’ve emailed the complaints to chesterfield hospital rather than going straight to pals as I think this is the best route xxx

Hi Leah,

I'm sorry to hear you're in so much pain and not getting the help you need. I was taken in by ambulance in Feb for similar excruciating pain that you're describing. They did internal and external ultrasounds that showed nothing and ended up doing surgery thinking it would be my appendix, gallbladder or ovaries. They changed from laparoscopic to laparotomy when they saw black liquid and they assumed my bowel had perforated but it was actually a ruptured endometrioma. I had no history of endometriosis at the time and the more I read about other people's experiences the more I'm glad I didn't as I'm amazed how often they seem to dismiss extreme pain when you tell them you have endometriosis. I'm afraid I don't have any answers on how you can get them to operate but I do know that my ultrasound was within about 24 hours before my surgery and they didn't spot that a 6cm cyst had ruptured or that there was another 6cm cyst on my other ovary.

Good luck, I hope someone will help you x

Thanks for replying love- I’m so sorry that happened to you, perhaps that’s what happened to me too? Either way I want answers so I’m hoping they reply to my complaint. I will push for an operation on Monday when I go back.

I’m so saddens to read so many stories of how we have all had to fight for treatment when we’re all in so much pain. It’s so bad!xxx

Good luck. From what I've heard PALS are really helpful!

Had a few cysts rupture from endometriosis they can be exstremley pain had one when I was pregnant ended up laying on bathroom floor I did get a scan straight away !!So worth asking if you can sorry you in so much pain I'm afraid for some reason they dismiss us with exstreme pain if they can't see it they try belittle us you stand your ground hun !!hope goes ok xx

Thanks for the pep talk huni I will do my best my husband is on it too so will be there fighting my corner with me. Sorry you had to go through all of that it must have been so painful xxx

Hope you get on ok !!glad your husband in your corner to support and guide you .afraid with our diseases we never stop fighting .I always (knowledge is power) I've always done as much research as I can to come up with new ideas with all my diseases .So keep fighting hun xx

Hi

I have seen an amazing gynea recently I know we can’t mention names on here but she’s the head of Burton gynea and can also be seen privately at Nuffield Hospital in derby.

Many of my friends and even my clients have now been to see her. I was originally seen at Derby Hospital and given 3 different diagnoses and the issue is as most hospitals are teaching hospitals most basic procedures will be carried out buy junior Doctors and overseen by the consultants otherwise how else will they learn.

I went in for a simple laparoscopic investigation and spent almost 4 hours in surgery after a significant bleed. Nobody ever explained what caused the bleed abd I am very reluctant to have further surgery.

Yet my friend saw the lady gynaecologist I mentioned and had a keyhole hysterectomy due to endo and was back at work within a month and looks and feels amazing.

I know how frustrating it is because you feel like your not being listened to.

You are well within your rights to ask for s second opinion at a different Hospital.

I hope you receive the care you deserve xx

Thanks sunflower for taking the time to reply. I have an endo specialist I’m seeing but if I get nowhere with him I will check yours out I’m sure she’d be pretty easy to find. Thanks again xx

I’m so sorry you’re going through hell, it sounds awful. I first got diagnosed with IBS too when I went to my doc after being in excruciating pain. When it happened again a few months later I got to see her when I was still suffering and she could see I couldn’t even walk properly and I got sent to hospital with a possible appendicitis. The surgeons at the hospital called a conundrum cos it was obviously not an appendicitis. They did an internal scan which found some cysts and it wasn’t til the did a laparoscopy that they found the endo. Had no idea what Endo was before that.

It’s awful how you’ve been treated, I hope you get some answers and the help you so obviously need x

Thanks so much stroplyboard and I’m so sorry you had to go through all of that before you got your diagnosis! How are you coping with the pain nowadays? Xxx

I’m very lucky I don’t have a lot of pain. Since having the lap I haven’t had anymore of the excruciating pain I had before, it was intense and came on suddenly, no one ever explained what it was. But now there are days when I don’t have any bother at all but some days i have cramps like period pain and sometimes I’ll get shooting or stabbing pains, I say it’s in my ovaries cos it’s lower than my stomach. And my tummy swells and is really uncomfortable. I struggle with fatigue and headaches and back and hip ache more. So I consider myself very lucky really

OMG that sounds terrible you keep fighting them but try and stay calm.i blew a gasket yesterday and have put a complaint into pals .i won't give up until someone actually speaks to me and explains things to me.let us know how you get on .i know exactly how you are feeling.xx

So looks like my cyst burst but that doesn’t explain 2 weeks of pain and now continued pain. The private endo specialist had rearranged to next thurs so I will keep u updated on what he says. He really is my last hope :( xxx

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