I got diagnosed with Endometriosis in September 2011 and had the Mirena coil fitted in March 2012 and for the six months after that things were grand but from August/September since things have been difficult, I have been in constant pain, my period's are back to being horrendous and everytime I talk to the doctors I'm perscribed painkillers that barely do anything. I've had to take days of work and University because it's been unbearable and even now I'm just back from A&E in bits because I feel like nobody is listening to me. I'm in pain, I'm scared and I don't know what to do. I need help but they just keep bumping me off. I have had no letters or anything from the Gynae ward like I was supposed, no checkup's not nothing and I'm at my wits end because I'm in agony.
I don't know what to do and I love my job and my course that I feel so bad not being able to go in because I've been in so much pain. What can I do, what SHOULD I be doing? Please help, I just don't know what to do anymore and I just want someone to listen to me and to understand that I can't do this.
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Charlie-Chuck
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I'm sorry you're having such a hard time. It took 15 years for me to finally diagnosed and even then I didn't get the treatment I needed. My advice would be to have a look for an endometriosis centre near you from this link bsge.org.uk/endometriosis-c... and ask your GP to be referred there. Either that or do some research and try to find an endometriosis specialist in your area, general gynaes don't seem to know what they're doing in my experience
I live in Northern Ireland and I've tried getting referred to a different hospital but my doctor says it isn't necessary and would be pointless. The tablets I'm on that help with the pain make me incredibly light headed and pretty much knock me out.
Am from Northern Ireland & I was told I had endo at 15 & had so many op's that I lost count but don't give up I've been on painkillers zoldeax injections but nothing has helped in my case I've asked for stronger pain relief but can't get any which is just leaving me in agony every month Northern Ireland really does need more help in this as many people I know are on alot stronger meds for lot less conditions x
I know there is a specialist in the Royal, managed to get my this lovely new GP to refer me there. So now all I can do is wait. He has also took me off Tramadol (wondered as well why I was put on them in the first place) and put me on Mefenamic acid instead. So we'll see how it goes, I've missed a whole week of Uni this week because of it. Gah, hopefully I'll be able to get caught up.
Oh bless ya hun. So sorry to hear that you are having such a hard time. It so frustrating when nobody listens! Esp when it the medical profession who u rely on and even more so when you are in so much pain!
I agree with doodah.
It took a long time to diagnose me and I am now struggling again so am going to go and fight my case at the dr's. That's all we can keep doing until something gets done.
Have you tried chasing up the letters from the gyno? Do that as well as pester your GP. Explain exactly what u have said here esp re the pain, how you are at your wits end and it interfering with your life.
I struggled through uni with it and it is not fun and can totally understand that u don't want to give it up. Let your uni dept know that you suffer from it and see if they can do anything to help i.e give u more time for essays, exams etc due to health reasons.
I have heard anything from Gynae since I had the Mirena coil fitted, my GP chased it up for me and it turned out I wasn't even on their systems. My tutor is aware of my condition and has been very understanding but I just don't want to fall behind which I am doing because I've not been able to go in. But thank you for your reply, to both of you xox
I agree with cloudyrain. Get your GP to refer you again as you cannot keep on struggling, bless ya. I was basically discharged after seeing the gyno only once when she diagnosed me and said try this. But like you I am going to have to go back to gp for another referal.
I am happy to hear your tutor is aware and understanding. I am sure you are, but keep trying to do as much research from home on the topics you are studying when you have the strength to. Have you got someone who can bring u books from the library and copies of lecture notes? Or perhaps get a dictor phone and ask for a friend to place it at the lectures for you, that way you don't lose out as much. Like I say I am sure you have prob already thought of this. But of course try not to over do it as that won't help either (I know easier said than done). Sorry I don't mean to come across like I am lecturing. I will shush now!
Ah honey - it's hard isn't it. A lot of the problems with consultants is as soon as they "treat" something (regardless of if it's effective) they discharge you so you come off their list and therefore they hit their "targets". However, your GP should be able to refer you back. The other option is calling your consultant directly (well, the department or their secretary) as most consultants/departments will allow you to self refer within so many months (6 I think).
Try not to get too downhearted - ask them to try something else, there is other stuff out there and I think people often have problems with the coil. Explore the options and have a think about what you would like to try yourself (I personally found prostap incredible, but then it's not for everyone)
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xox
How to get your family to understand!
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