I deliberately don't see the GP often - it takes a month to get an appointment sometimes and the guy I'm registered to isn't exactly helpful, so I just get my prescriptions on repeat and stay away. I really had to make an appointment though - I needed to talk to someone about how bad my fatigue is at the moment, talk about having my mirena removed, and how much I'm struggling with the see effects. The pain consultant I'm currently under is clueless (my last appointment lasted 4 mins and all he talked about were reducing my painkillers) - I found out that there is an anaesthetist / pain consultant at the other local hospital who is part of the specialist endo centre and specialises in chronic pelvic pain so I wanted a referral. I also need a referral to an endocrinologist as my hormones have been screwed up since I came off zoladex in 2009 and it's causing me a lot of problems. Then I thought I might mention that my body clock has become completely screwed up and see if he could give me anything to help me get back on track.
However, my appointment was a complete disaster and I'm left realising that not only does he know nothing about endo, but he couldnt really care less about my treatment.
When I went in, he fires straight into the painkiller reduction and asked how far I'd got - I said I hadnt gotten anywhere as I'm in so much pain from the mirena, but now I can have it removed, I'm happy to start. He asked when the gynae was taking it out - I said he wasn't, that I was getting the practice nurse to do it. He didn't seem too pleased about this.
Then I started trying to talk about how bad the fatigue is and how I've only left the house three times this month. He really didn't grasp the severity of what was I talking about - he kept checking his watch, all he said was "that must be tough". Then he pulled up the letter from my gynae saying they only found minimal endo during my lap - I had to explain to him that mild endo doesn't mean mild pain. He looked at me like I was lying.
Then I broached the subject of the referral to the pelvis pain specialist at the other hospital and he said no, he wasn't happy to refer me somewhere else as there was nothing different they could do. I pulled up their website on my phone and showed a list of all the treatment options they specify which I now have no access to. He then had the nerve to ask me why I didn't just see the guy privately? I'm usually terrible at standing my ground with doctors but I got pretty angry at this point - I made it clear that I was entitled to be referred where I want to be referred and if there's someone locally who understands my condition and is better placed to treat it, that's what's in my best interests. After several minutes of arguing, and him looking at his watch, he said he'd look into it.
At this point I decided not to even ask about the other things as there was no point.
He then asked me if I'd considered counselling and if I might be depressed. Duh! Of course I'm depressed - I'm in agony, my fatigue is terrible, the mirena is affecting my mood and I don't have a single doctor that cares about my case. He asked if I want anti-depressants but I said no - I want the mirena out and that should help. Then I left.
I just feel so angry and let down - is it really too much to ask to have a bit of support and the feeling they care about what's best for you, rather than what costs the least and whether you're making them run a bit late?
I know I need to change practices but I'm concerned about ending up in an even worse situation - at least this practice give me my morphine on repeat so I don't even have to go in there.
When I lived in London I had such exceptional care from everyone I saw which makes it even harder. The pain specialist I had in London was helping me reduce my morphine - she told me to reduce very gradually, no more than 10mg a day, and that it could take years to get down a low dose. This new guy has written to my gp to say I should be off the concentrated oramorph within six months - I asked the GP how much I should reduce by, and he said to go from 4ml to 3ml which is a reduction of 120mg a day! I would be I
Hospital with withdrawal if I did that, even I they are adding in a bit of tramadol.
And they want me to restart pregabalin which I struggled with before on a low dose because I have ME. This pain guy wants me to start on 75mg a day and increase to 300mg a day within 4 day. I'm already housebound 95% of the time, if I take this dose I'll be completely non-functioning but they won't listen.
I honestly don't know what to do - even if I find a new GP, they'll have the notes from this clown and the consultants that completely trivialise my situation and they probably won't take me seriously either.
What hope do I have now of ever getting to see an endocrinologist? My hormones have been screwed up since I stopped zoladex in 2009 - I still have no sex drive and hot flushes etc but because my gynae did a blood test whilst I had the mirena in at a random point in my cycle and wrote to my gp saying it shows I'm ovulating normally (I believe you need multiple tests and certain points in your cycle to compare levels), that's apparently the end of it. Worse, I was on zoladex for 2 years and I've never had a bone scan.
I'm completely devastated - I feel completely alone in this and I don't know how to move forward. What would you do?
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cupcakegirl
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I've just done some research and found that the pain specialist I want to see does do private work locally so if it comes to it, I could pay for a private appointment and ask him to put me on his NHS list, although I don't know whether they still do this.
However, I don't see why I should have to do this - the guy I saw at the other hospital made it clear they have no resources and nothing they could offer me to help further, so all they want to do is reduce my painkillers. This other hospital apparently can offer various forms of painkilling injections, acupuncture, nerve stimulation, behavioural therapy and so on. By my doctors own admission, my case is complex - if there's a hospital down the road where there's someone specialising in my condition rather than the general pain consultant I'm seeing now, my doctor should be the one referring me there, I shouldn't have to find out about it by myself and then begging for a referral. When he initially referred me to the pain consultant, I got the choose and book forms through but it only had my current hospital on it, whereas for my gynae referral I got to choose between the two. I thought I was supposed to be able to choose any local hospital with the right service - does anyone know what the rules are for getting a new referral / second opinion? I don't want to be demanding but at the moment I'm not getting even halfway decent care and no-one is vaguely interested.
I feel completely let down, and as though they're all just looking at me in terms of the cost to the NHS rather than as a person.
What should I do? Should I write to my GP and give him more information on this consultant and insist on a referral? Or should I go elsewhere and hope they'll refer me? If my current GP does refer me, what will happen if I move GPs in the next few weeks - will the referral still go through? I'm wondering if I should wait and see whether he does refer me but how will I know?
Oh God cupcakegirl, my heart goes to you. i can understand why you are so frustrated.
How about a fresh start with registering in a new GP?
Or if you can afford to go private to a good endo gynae so you can take referrals etc?
I'm quite concerned that this clown wont refer you so easily. I dont know why so many doctors do this, even my GP was reluctant to give me referral to see someone private! I dont know what they are thinking....
if the above suggestions are difficult for you, then you should put pressure, too much pressure to get this referral to the doctor you want. xxx
Your experience sounds horrendous. If you can afford to go private I would do that. I know you shouldn't have to but at least you get to see someone who knows what there talking about. Try and think of it this way if and when your clown of a GP gets his act together it could take 2-3 weeks for him to refer you and then your have to wait for an appointment which could take 6-8 weeks if your lucky. If you go private you could be in there much much quicker and be recieving new better treatment by the time your nhs appointment would have come trough. Also if you pay to go private you can also change your GP immediately without it having any effect on your treatment.
Definatley get a new GP! If there is an endo support group then someone may be able to recommend one near you. If not, try posting it as a question on this site or the endoUK message board. You absolutley have the right to a second opinion (I did). When you a get a new GP I would mention at the very first appointment that you changed doctors because you felt you weren't being listened to. They will then want to show they're better than your last dr and should listen very hard -this tactic worked on my new dentist
It's horrid that when we're at our lowest we still have to fight for everything!
Getting the right GP is half the battle so don't give up xx
Thanks so much ladies - I'm so low at the moment because of the stupid mirena and I just couldn't cope with it. I'm always concerned when I see any doctor that they won't help or take me seriously, and that's the case with every doctor I've seen here.
At this point, it's relatively pointless being referred back to an endo specialist since there are no more surgical or medical options to try for the endo. It seems my pain is mainly chronic and neuropathic rather than a direct result of the endo. However, a good pain specialist is essential - the directions this guy and the gp have given me for reducing my painkillers are dangerous and irresponsible and clearly aren't what's best for me as a patient, so I can only assume its about money.
Part of me wants to see this pain specialist privately ASAP but money is very tight at the moment - I no longer work, I have a small business but it's making a pittance and I'm not well enough to work on the vast majority of days. If I can avoid paying I need to, having said that it's also the principle. It's my right to be referred to the most suitable consultant and I shouldn't have to pay for it when he works in an NHS hospital 10 minutes down the road. The gp seems to thinks that a consultant is a consultant and that they all have the same knowledge and treat us the same way - of course this couldn't be further from the truth.
Thanks again all - I'll think about what to do when I calm down.
I agree with the others, you should look into changing GP. I have had some incredibly unhelpful doctors in the past but went to a new surgery and have had amazing treatment with very supportive staff. Best wishes
Thanks ladies - just called to make an appointment to get my coil out and it's not until the 22nd of March because it needs 20mins with a doctor and a nurse. I can't believe I have to put up with this for 2 more months. Plus I'm now going to have to stay with the doctors for at least that long because if another surgery has the same issue I'll end up waiting longer,
Hello i totally agree with everyone else but i had my coil removed couple of yrs back and it was only my doctor and it took 2seconds. I would check with another doctor as cant see why u should wait that long to have it removed. Hope things sort out for you i really do xx
That's what I thought - how can it take 20 mins and need a doctor and a nurse?! Maybe they're thinking of an insertion? I will try to speak to them again and get more sense out of them but I burst into hysterical tears on the phone to them earlier so I need to calm down first!
Most definitely the answer is a whopping big no, I'm afraid. I desperately wanted it to work because it was the last thing that I hadn't tried. The first four months were hell - severe contractions every day, bleeding most days, mood swings and depression, weight gain. The pain and bleeding are less now but the rest of the problems are still just as bad. I'd personally never have one again as it has been a nightmare, but some women get on really well with it - there's just no way to know in advance, I wish there was.
It's always worth trying something but I'd recommend getting an agreement from the doctor that they will take it out if you ask them, as soon as you want. Too many women get fobbed off for at least 6 months and are just left to suffer which is terrible. Hoping I can do something to avoid 2 more months of this!
Yeah i believe it wont suit me as nothing else has, its like my body hates extra hormones lol. No pill as get migraines. I had the coil fitted 3years ago and was doubled over for 3wks. I went to the family planning where it was fitted after 2wks and he said all was well and to give it a chance but after the 3rd week of walking in agony i demanded my doctor remove it and then she told me it had slipped down into my cervix..... no wonder i was in pain. Its my last choice aswell so will give it a shot after my temp moneopause has finished and see what happens. Hope ur ok tho xx
It's a shame you can't take the pill as its the only hormonal treatment I trust now. I'm going straight back on it when the mirena comes out.
I get migraines too and found that some pills made it worse but others weren't a problem - maybe a pill with a lower dose of oestrogen like Loestrin 20 might help?
Thank you and i suppose will just have to wait and see what happens, if its so bad i will get it removed. Hope you can get something sorted soon and start to feel better, let me know how you get on. xxx
So sorry you have been going through this, this has made be really angry at your doctors! - 2 months for an appointment is not acceptable when you are struggling so much. 20mins is just a double appointment, it really really should not be that difficult to get. This might sound a bit random but I have only ever had problems getting GP/nurse appointments when I have lived in big towns and cities, since I have lived in villages I have always managed to get GP appointments on the same day and within a week-10 days when its something planned like this. Where are you based? Would you be able to look into registering with a surgery in a village near you, under the nhs rules now you don't need to live in the village/town etc where the surgery is
Other option (but a bit dramatic but justified in your case I think!) is to go to A&E and refuse to leave until they take it out! I would pick your timing though, e.g. first thing on a week day morning when they are quieter!
Bless you, thank you - it is infuriating. Unfortunately i can't drive so I'm stuck with the few surgeries I can walk or get the bus to. My local a&e would probably refuse to do anything unless it's an emergency, but if things get really bad it might be my only option.
X
Hi Cupcakegirl
I feel your pain and sadly there seem to be more crap GP's than good ones who only think about what treatment costs in the short term rather than what is best for the patient.
I would change GP's and state to the new one that you are doing this because you are unhappy with the 'support' and ask as a matter of emergency to have your Mirena coil removed as the previous surgery will not do it for 2 months. You are having a serious 'reaction' to it and it would be detrimental to your health to leave it for that long. I agree with talking to any local groups to find out which GP's are better and if necessary find out who your local PCT (Primary Care Trust) is so you can get in touch with them if you still receive poor treatment. You may want to anyway but right now you need to get help and support.
With regards to being on Zoladex and bone density scans if you took the add back HRT there is no need to scan and to be honest I would be surprised if you were given Zoladex without it. I asked about this as I have also had Zoladex for up to 2 years on a few occasions and as long as HRT taken there is no need. Don't put yourself through anything you don't need to at the moment.
Sometimes a small change is all we need and a change of GP might just be that change.
Good luck and stay strong, we really do know how you feel.
Unfortunately I did take zoladex without HRT for the whole two years except for about a month - it was prescribed to me but I was told I only needed to take it if I was suffering with the side effects. When I took it, my symptoms got worse, and I stupidly thought it wasn't necessary so I stopped taking it. I wish they'd told me how necessary it was, as I've never gone back to normal since and it's been nearly 4 years, and I'm struggling with hip and knee pain which is quite severe.
Thanks for the advice - im going to look into alternative gps tomorrow.
You poor girl. I want to give you a big fat hug and knock out your GP !!! I have to say, though my GP has always been very good with any other health issue with me or my children, when it comes to anything remotely gyne, they haven't got a clue. It is just far too specialised. We are very complicated creatures and none of us react to drugs or treatment in the same way. Meeting a doctor face to face when he is looking at his watch and not actually paying attention to you is soul destroying. I am so sick of being treated like a stupid little woman who is having a bit of a bad period pain and a bit of bleeding. I am finding this disease utterly destroying every aspect of my everyday life. I cannot function.Each day is a struggle. All I want to do is curl into a ball and scream and cry. To be in constant pain and being given drug after drug that makes things worse is beyond depressing. You are articulate and sound extremely well informed. You have done plenty of your own research. I would suggest you write a long letter outlining all your symptoms and all the treatments you have tried and all the treatments you would like to try. Point out that you do not want to be written off and you have a right to be treated as a person. I would send that letter to your GP and to the Practice Manager of your surgery. I would also send a letter to the specialist that you want to see. You may have to have one private consultation just to get in the loop so to speak but after that you are completely entitled to get help on the NHS. In a letter you can get everything you want to say across and it is all there in black and white for them to make notes and so on. You should not have to 'fight' for help. This disease is enough to be fighting for anyone. xxx
Thanks for your kind words. I was diagnosed almost 10 years ago and I've gradually been through every medical and surgical option - it seems my pain is caused more by nerve problems than the endo itself which makes it very difficult to treat. I've been under several specialists who have educated me well and I've spent ten years trying to understand this disease, so of course I know more than pretty much any GP would know about it - I'm not expecting them to be very knowledgeable but a little bit of compassion and respect would go an awfully long way. If I am at the end of the road treatment-wise, which I believe to be true, they should be wanting to bend over backwards to minimise my symptoms as much as possible - or just support me and appreciate that I might know a bit more about it than they do.
I really appreciate the support - Ive been in a terrible state today, and hearing from other that I have a right to be angry and a right to better treatment is a big help.
Thanks - not totally sure what to do yet, going to look into options tomorrow.
I couldn't read your story without replying. You really have been to hell and back. Although you seem to be focussing on the pain management side it sounds to me that what you need is for an endometriosis centre to take on your whole case and treat you as a whole, rather than be passed around so many different doctors. If you are considering spending your own money to get the ball rolling privately then if I were you I would want to be seen first by a gynaecologist at the endo centre. Once they have you on their list you should, I think, be able to access all the services at the centre including pain management to get you better. I'm sure if you phone up the centre they can give you information on this.
I would strongly suggest changing
your GP aswell. Do you know anybody
who lives near you who likes their GP? It might be worth asking around. I know what it's like to see somebody you feel doesn't care about you and it will only make you more anxious and distressed. once I found a GP who understood everything fell into place.
I hope that helps - I know there are so many things going on at once but that's what endo centres are for xx
Thanks for your reply - funnily enough, I am being treated by a gynae at the hospital where the endo centre is and, based on the information on the website, it would appear I am being treated as part of the centre, even though none of the staff at the hospital have ever mentioned the fact that they are a specialist endo centre. I saw him in December and he was well aware of how bad things are but at no point did he suggest referring me to the pain management team that form part of the service. It seems this was because he could see from my notes that I was under the care of the pain team at a different hospital - I even told him how bad the care from the pain consultant was but he didn't suggest anything. I wish I'd known at the time as I would have asked him to refer me. It seems to me that the GPs have no idea of what's available locally and they seem to think that all consultants have the same knowledge and expertise which is far from true.
To me, it makes sense that I should be under the consultant with the most knowledge of my condition and who works closely with my gynae, in the same hospital. I genuinely don't understand why my GP wouldn't agree - I an only assume its to do with costs. He kept saying it would make no difference and they wouldn't be able to offer me anything I can't get now, and I told him this wasn't at all true then showed him the website listing all the treatments they offer. I'm just hoping he actually makes the referral.
Several years ago, I was under highly respected gynaes and pain specialists who tried most things possible and treated me with lots of respect. I was living in London and surprised by how good the medical treatment was after my experiences locally before moving though. Now I'm back, and it's even worse than I remembered, and it's made worse by the fact that I have tried everything, and that I have several doctors who think that my pain is mild because my endo is mild, and all they're interested in is getting me off morphine although none of them can tell me why this is so essential. I feel like I'm a problem to them, like I've done something wrong because I haven't been a good patient and responsed to the treatments. I'm on the scrap heap, mentally I'm probably at my lowest and there's no-one interested in fighting my corner and making sure everything possible is done to make my life as bearable as it possibly can be. I'm only 30, I've got a long way to go and frankly I don't think I can live like this for another 30 years or more.
Sorry, I don't mean to vent so much - I'm asking around to see if anyone can recommend a doctor. Fingers crossed I'll find someone who cares.
I am so sorry . I am in a similar case . My new GPS are rubbish and I wonder if I should move to. They changed my hospital and I did not want it changed .
Last time, I went out I cried ...,
I would change GPS ask around to find a good one. I had a fans tactic surgery before I moved to a new county . I have been asking for friends for a better surgery .
I know how you feel we all do.
try to take a day at a time.
Try to do something you like when you can .
you can write to me if you need me.
You all have really bad days and you have good days .
get the mirena coil out phone back and tell them you need it out now not in two months !!!
Thanks for your reply, and I'm really sorry you're going through something similar. Changing GPs is really difficult especially when you need regular medications and it takes them a while to get your notes etc. I'm trying to get some info on where might treat me better but it's difficult - most people I know never go to the doctors so can't tell me much about them!
Just an idea.. could you go the local sexual health clinic, tell them you need the coil out for other reasons (you can't have one if you have multiple partners.. just sayin') as an emergency? Might be worth a try. My doc removed mine, took literally 5 minutes.
Thanks for the advice - I'm going to find out where my nearest one is and give them a call to see if they'll do it.
Im feeling awful today - to help me reduce my morphine, they've given me pregabalin and tramadol. I haven't taken tramadol for years and I forgot how dreadful it makes you feel. When I previously took pregabalin I was on 25mg and I struggled - now they've started me on 75mg and they expect me to increase it by 75mg a day until I'm on 300mg. I've been knocked out for 12 hours and now I feel awful.
Even though my morphine dose is high, it didn't make me feel dreadful every day - I feel bloody awful. Pretty fed up right now.
Tramadol with pregabalin? Are they serious?! No surprise you are knocked down hun, you need to find another doctor asap. I tried pregabalin too, and only on its own is awful and I had to go to 300mg in 10 days not in 4!
You need to sort it out soon. Big hugs to you and if you need to see someone in London let me know xxx
Not only tramadol and pregabalin but my morphine too - they want me to reduce my oramorph from 80mg every 4 hours to 60mg straight away which is an enormous reduction and frankly quite dangerous. Add in the slow release morphine, the pregabalin, the tramadol and the fact that I have ME, it's disastrous.
This is why I wanted a referral to the other guy - this can't be the best course of action for me - making me feel far worse than I did before and giving me yet more drugs!
If you possibly can afford it, go privately to see an endo specialist. That was the only way I got anywhere.
I also had a useless GP who basically told my local hospital there was nothing the matter with me so I'd say get a different GP as soon as you can. I'm sure other doctors and specialist know there are clowns in their profession!
Hi - if they have told you you have minimal endo can I ask that you go to your GP and ask to be screened for adenomyosis. For some reason it is not screened for routinely YET but is very common post hysterectomy for women with endo to be told that they had adenomyosis too. The sooner the better too xx Please visit the main Adenomyosis Advice Association website to learn more about the symptoms as yours match those of the condition. adenomyosisadviceassociatio... x Danielle x
Thanks for the advice - my previous specialist did an MRI and there was no sign of adenomyosis, and my uterus has apparently looked completely normal during all surgeries and ultrasounds (although I know that's not definitive). I've had all the treatments they would suggest other than a hyst or endometrial ablation, which isn't something I'd consider. Honestly, I've always thought I probably do have it as my symptoms match up, but there's been no evidence of it even when I was under specialists who I believe knew what they were looking for, unlike my current gynae!
Hello honey. So sorry to read all the trouble you are having. If this pain management speciist is a consultant, he will have a se,retary. Phone the hospital and ask to speak to(give their name) se,retary. They might be able to gi e you advice about getting put on tbe nhs waiting list. Good luck
I wondered how you were doing and what you'd decided?
I hope you've made some progress and I'd definitely name and shame them by writing to the practice and complaining. You're entitled to good service and a life with less pain, fatigue and discomfort and if they can refer you to help you, they really should and should have done it surely without you needing to force the issue.
Is there anyone else in your practice you could see before moving GPs or could you speak with a nurse at your practice who may be able to sympathise and help guide you what to do/who to speak to? I never see my own GP, I always go for a female and our only one is a locum so it varies who I can see but I never see my own male GP.
I've since had a letter from my GP saying he has decided not to refer me so I'm writing a letter to him and the practice manager giving all the reasons why they should, including the fact that my doctor has lied to me about some referral issues, and they screwed up my choose and book in the first place by only giving me one hospital on the form.
I'll see what happens - there are only three or four surgeries I'm in the catchment area for and only one of them has good reviews. It's quite far for me to walk as I don't drive but not quite far enough to get a cab - I think I'm going to have to move there but I want to wait and get my mirena coil out first.
I've seen every permanent gp in the practice and there's no-one that showed any interest or that I'd particularly trust. The one gp that was okay is on maternity leave now.
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Half-diagnosed - What do I do?!
GP was rude and need advise on next appointment with specialist and what to ask. Obliterated POD, immobile ovaries, fluid in tube, pain. 
I disagree with the hospital what do I do?
What to do now? 
