right ive just got back from yeovil womens hospital confused more than ever.
i never got to see my consultant as they were running behind on my discharge day i was told more surgery. Now today ive been offered injections to put me in a state of menapouse for 3/6 months or try for a baby as pregnancy is the best thing for endo according to this consultant never explained much about these injections just said every treament i try will have side effects but he can give me some tablets to help with the hot flushes sounds a little scary for me. And my usual consultant said getting pregnant for me is probably impossible think i need an endo specialist
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sully1
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Yes, I think you need to either get an appointment with your normal consultant or a second opinion with an endo specialist, as it doesn't sound like the consultant you saw today is that well informed - the pregnancy point being the clearest example of that!
You need to find a consultant who will actually talk through the options with you and explain things so that you are fully aware and can then make an informed decision about what treatment you have, unfortunately it doens't sound like the one you saw today is the one to do that!
Sorry you've had such an up/down confusing morning, I hope things get better for you soon.
thank you ive just been thinking to myself is this how it should be is it me over reacting he never even told me the name of the injection ive just read up on them my self im thinking it would be the prostap i aso read a few months ago endo can result in prem birth the consultant disagreed with me as my twin girls were 10 week prem resulting in my husband being a little scared to try again as we went through hell he just kept saying so what do you want to do try for a baby or the injections as if i decide on the spot so i said oh i cope for now and send me another appointment so i have time to think
Definitely not you over-reacting so don't let yourself think that. You really shouldn't have been put in a position where you felt you were being forced to make an ill-informed decision, or had to resort to saying you can cope for now.
I had an appointment with my consultant a few weeks ago and it ended up being a conversation on pregnancy v. prostap injections - it is not a black and white situation, and my appointment turned into a lengthy and informative discussion, taking all of my current situation and background into account and I wasn't put under any pressure to make a decision at the time.
I really hope you get to speak to a different consultant soon, perhaps try phoning your normal consultant's secretary and see if you can get an appointment (or even just a phone call) with that consultant by explaining what's happened today? x
Hi, I had my first consultant appt in june. My local NHS PCT have just started a pilot project outsourcing work to private clinics. So I had an appt within 3 weeks of being referred which was great.
- went to the appt and the consultant said on his notes I was suffering with abdomin pain and that's it. I told him no I had loads more symptoms........he never gave me a chance to tell him my other symptoms.
He asked me if I had children and I said yes a 6year old daughter .......he said that I def don't have endo because u can't have children if you have endo!!
He asked me if I had been tested for infections and I said yes and everything came back clear.........he proceed to tell me that in future I must iron my underwear, not wear tights and save my lacy underwear for special occasions!!
He then told me that he believes that I don't actually have a medical condition and his exact words were that my brian cells are sending messages to my body telling me that I have pain - but nothing is causing the pain - and that I need antidepressants to sort it out!!!!!
He then booked me in for a lap??!!! And I was gonna have it done 3 weeks later at a private hospital.
- went home, picked up the phone to the PCT and told them I never wanted to see anyone from that private company again cos they didn't no wot they were talking abt! I have been waiting 12 weeks to see a specialist endo guy on the NHS who is a top dude in the area - and trust me it will be worth the wait.
Don't let anyone mess u around.......we are in control of this. Research for top endo consultants and ask to be referred to them
thats awful i just dont feel comfortable with them and i think with something like endo you have to feel comfortable with your consultant my actual consultant laughed in my face when i said my gp suspects endo but went through with the lap as i was told he was a good surgen but lacks in bedside manner and then yesterday i saw some different consultant who just did not care really so going to speak with my gp and see what we can do i will do some research thank you
It angers me that this happens so much. When I ended up in A&E, after waiting 5 hours the doctor told me my cysts had grown but told me to go home. It was only because the nurse saw how upset I was and suggested trying to get a bed in a local hospital for the night that the doctor called the hospital and then he was told i had to come in straight away for an emergency operation, he'd have just been happy for me to go home. After the op I was told nothing and sent home with the offer of a follow up appointment six weeks later (not knowing what had happened, what they'd found etc) when I got to the appointment they had booked me in to see the wrong doctor (the one I was supposed to see wasn't there) They got out my notes anyway and there were empty!! I was then told I could come back and see the doctor who I was meant to see in two months time! It was an absolutely abmissmal way to treat someone. I then went private, ended up having another op two months later and although the consultant was reluctant to say it directly the op hadn't been done properly the first time. Also as above I was also told I was depressed and that stress doesnt help ... well of course I feel depressed im in constant pain, its not anxiety causing the endo its the endo causing the anxiety!! Sorry to moan on your post, Im just trying to say its terrible the way you have to make a fuss just to be treated properly with respect and dignity and not be made to feel like you are making things up or taking up too much of their time. I'd like to see the male doctors cope with this horrible condition then they wouldnt be so dismissive!!
My advice would be make a fuss if you need to to get the 'service' you deserve, dont let them rush you into anything. I took zoladex injections and found they helped me a great deal. The first time I took natural sage tablets with it to counter the side effects of hot flushes and the second time I took HRT. Yes theres side effects but in all it was great at reducing my pain and symptoms. If you need any advice you cant get or are unsure just come here. Hope things improve for you soon and you get to see someone who can give you the time and info you need.
p.s. curlywurlyamy. That patronising git I'd have wanted to slap him!! I laughed at ironing your underwear and am intigued what this does????
thank you it is a nice to no im not the only one going through hell with this and i would like to no what differance medically ironing your underwear would make that really made me giggle
Ha ha!! My face was a picture when he said all that to me! I just sat there in silence with my mouth open! Then when he said he would perform the lap on me all I could think was there is no way he is cutting me open! He didn't have a clue what he was on abt!
my consultant is ment to be a very good surgen some of the mums at my twins school said hes fab at surgery but lacks in bed side manner and in my little experiance of endo ive found out for me personally its not just about surgery skills i need someone who going to listen to me and give me advice and explaine to me what it is there doing so im going to speak with my gp i need to no the ins and outs as to what there doing
You need consultant called Tyrone Carpenter. He was on embarrassing bodies last year! He is based @ Poole( Dorset) hospital. You can see him on the NHS and privetly.
He knows he's stuff and will explain every thing to you clearly.
awwwwwww thank you my gp sent me taunton ive got a new consultant there i googled him he sounds fab but if no joy with this one i keep tyrone in mind thank you got to go through the choose and book again but id rather wait thean get fobbed off
The scarey thing here is it seems those new to the horrible endo/adhesion experience have no idea the years of doing their own research they will have to do, especially if NHS patients, the misdiagnosis, tests and surgical procedures etc whilst trying to live with a debilitating condition.
Endo centres are starting to pop up around the UK but I think all 'one stop shops' so to speak are all private! We can only raise knowledge of this condition and pray that despite cutbacks women in the future will get diagnosed far quicker and more endo/adhesion specialist gynes are available
in specialist centres open to all sufferers, not exclusive only to those who can opt for private!
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