Update: GP put me on the pill for my kidney pain. Refused to increase painkillers. But will help in other ways. Already have mirena.

[angelyn]

Soo..went to gp with the following aims:

1. Increase/change my pain meds as I am still in pain constantly. Currently on zomorph 60mg ,naproxin 1000 mg and amytryptaline 60mg a day.

2. Possibly get referral to pain clinic that other gp mentioned.

3. Possibly get something for the nausea.

4. Get referred to endo specialist centre.

5. Possibly go back on antidepressants.

6. Ask if she will help me apply for esa.

Results

1. She wouldn't increase my pain meds as she doesn't want me to become tolerant /addicted. I'm not asking for more morphine because it feels euphoric. It makes me feel awful. I'm asking because my general level of pain makes me want to cry. It spikes up daily and makes my body spasm and I scream. I reckon this is renal colic. ( latest theory is endo on urteters/ inside urinary tract or kidney stones that have been missed). I've had this pain for 9 months now,without a diagnosis. So she's put me on the pill( microgynon 30) to "stop my hormones from flaring up" (or something like that, as my mirena has nearly stopped my period already.

2. She said pain clinic is useless until you have a diagnosis. This is fair enough because I complained that previous gp wanted to send me to pain clinic without trying to find the cause of the pain.

3. Nothing given for nausea.

4. She said she will find out if she's allowed to refer me to the specialist centre.

5. Almost put me on citamelopram (however it's spelled) but when she found out id been on trazodone before for depression, she's put me back on that.

6. She said she would help me in any way possible with applying for esa.

So on the whole...I have mixed feelings about this. I'm glad that she's taken my depression seriously and am super grateful that she's willing to help with my esa application. She was shocked that people with endo that were on morphine/had their organs stuck together , were turned down for esa because the medical said they are fit to work.

I'm a tad worried that she needs to speak to the practice manager to find out if she's allowed to refer me to endo centre. To be fair she hadn't heard of the centres so is perhaps just checking because it's the first time she's referred someone.

Regarding my meds..I'm quite disappointed that I'm expected to live in this amount of pain. I understand that morphine is addictive. Everyone has to be weaned off it anyway. I've told her that my mother was a drug addict (crack) so I always follow the instructions and never take more than I'm prescribed.

If I am tolerant, it means that my current pain medication doesn't affect my pain at all. I suspect I have renal colic due to the spasms (pain similar to what you get with kidney stones). I wonder if they would let someone with renal colic live with their pain.

I just don't understand how it is worth it and acceptable for me to live in agony for the next few months (after 9 previous months of agony ) , so that I don't become tolerant to a legal painkiller that I would need medical supervision to come off of anyway (tolerant or not).

I mean..I keep telling them I'm still in pain. They've been trying stronger and stronger painkillers for months. I told them as soon as I started the morphine that I was still experiencing pain. They increased the dose and again I told them I was still experiencing pain. This is the 3rd time I've told them I'm still in pain on morphine.

I don't think I'm becoming tolerant- I think that like the months before, they just haven't prescribed a sufficient amount in the first place to stop my pain. I'm lucky if I get an hour a day that is pain free.

I'm also not sure what good the pill would do anyway if I've got endo inside urinary tract or on ureters. Everything I've read says you need surgery for it..While it may stop the endometrial tissue from bleeding (if it does), it doesn't stop the tissue being there in the first place. It's like having a benign tumour that bled and now they've stopped the bleeding- you still got a tumour you know?..perhaps I'm looking at it all wrong though..

It also doesn't inspire confidence when your gp has to Google treatments for endo while you are sitting there.

So yeah..mixed feelings..

[moxyfilms]

Like Lindle has the insisted, there is a patient bill of rights or something similar in the NHS which entitles you to seek treatment with the correct specialist. I don't know if there's a grey area (you are previously endo diagnosed, right?) for those who have never been diagnosed with endo or something to get referrals to Endo specialists but you don't want anyone else mucking around in there if its suspected! There's the rub. But looking at it this way, an endo specialist is a GYN consultant with an interest and much practice with endo cases, and THEY'RE the one to decide if they're the right doctor to treat you, and if they're well experienced with the disease they will recognise maybe some of what you're experiencing.

I don't have the link but I know Lindle has posted it before. She has told me to take that bill of rights with me to see my GP abd show him that I am totally entitled to ask to be referred to that consultant, no matter where in the province he is (as I'm in NI). But then the trick is to help your GP write that referral so that all the facts are straight because it's from that referral that the consultant's practice will triage your case and either agree for an urgent visit or put you on the long finger.

Oh I can't tell you how frustrated I am for you and how hurtful it is to read about what you're going through, all of it.

I'm here, if that's any consolation, for what it's worth. xx