I have endometriosis and adenomyosis and pain every day, and have done for over 20 years. I also have ME. My GP is causing me so much additional stress and I don’t know what to do.
Many years ago I was put on opiates after about 20 hospital admissions for pain relief. Thanks to the meds I’ve had no emergency admissions for years now as I can manage the worst of the pain myself.
I have tried every treatment licensed in the U.K. for endometriosis - six surgeries, every type of hormone treatment, anti depressants, epilepsy meds, every type of painkiller. Several years ago it was decided there was nothing more to be done - take the painkillers I’m on because that’s my lot. This is far from ideal but I’m out of options.
I reduced my dose by 90% through my pregnancy with my twins because my pain improved massively, and needed no support for this. I have maintained that dose for the last 4 years even though my pain is worsening.
My assigned GP seems to think I’m neurotic and a drug seeker who doesn’t need pain relief, despite the many pain specialists I’ve seen over the years who say I do. I’ve been at the practice for just over 4 years and I’ve probably seen her a couple of times a year. She regularly does things like change my prescription without telling me. They brought in an external GP to review all their chronic pain patients - we spoke for 40 minutes, he took the time to listen to me and said I am using them responsibly.
Recently she phoned me out of the blue and said I should be reducing them more quickly. She said she’s not suggesting replacing them with something, just stopping them - I asked how i am supposed to cope with the pain. I explained that my pain fluctuates as my cycles are irregular so one month may be worse than the last which affects how much I take that month, so what might last me 8 weeks now might last 7 or 9 weeks next time, and she seemed to understand this.
She said I should have a hysterectomy and was disapproving when I said that I wasn’t ready to completely give up on more children (I assume because our twins are disabled - we have decided not to have any more but I am really not mentally ready to have such drastic surgery). A hysterectomy is not a cure for the endo and frankly I am scared that if I have one but am still in pain they will refuse to help me because I should be cured.
I emailed about 2 weeks ago to request my usual prescription. We’ve had a very tough couple of weeks so I haven’t been able to collect it and have just been getting by as best I can, rationing what I do have (I always keep about a week’s supply on hand due to previous issues and I’ve been cutting down so have been able to stretch it out). Went to get it and it wasn’t there.
Looked at my online account and apparently the request was refused. Nobody contacted me to let me know. I got the usual response email saying they’d be issued within 48 hours. I think I must have sent the request one or two days early (it’s on a two month repeat) by mistake. They could have just issued it, or emailed back saying I should request it in two days, or called me.
This is not the only issue I’ve had with her. For example a few months ago I had a new type of pain and other bladder related symptoms (including a few instances of retention and intense shooting pain that made me vomit) - could just be endo but might not be, so I did an online consultation and she responded that the pain was caused by my painkillers and if I stop them the pain will stop (no evidence for this, no investigation, seems unlikely to be the meds when I’ve been on them for years, etc).
I understand that patients with chronic illness aren’t easy for GPs to treat, but I understand this and don’t expect much. I try not to bother the doctors unless it’s something urgent or worrying, and I am responsible with my pain relief - have never taken too much or had any problems.
It’s at the point where I have stopped contacting the doctor at all even if things are really bad. I recently plucked up the courage to contact them last week because I’ve had a low grade fever for nearly two months and it’s starting to worry me, but I was worried she would just dismiss me. Luckily another doctor called me who acknowledged that it’s complex but they should definitely run a few blood tests just to make sure there’s nothing else going on. He wasn’t rude or dismissive and he treated me like a human being, and I realised that things don’t have to be like they are.
What can I do? I’m worried that whatever I do will be seen as doctor hopping. I should not be scared to go to the doctors when needed. I don’t have health anxiety, I don’t worry that I have anything sinister going on, but I’m sick of being dismissed and everything blamed on my meds or my existing diagnoses.
Sorry, that was an essay. I know lots of chronic pain / illness patients are treated this way - has anything made it better? I hate being like this, but I know it is not my fault that I’m in pain. I definitely did not ask for they. I shouldn’t feel like this and I need to do something about it but I feel like anything I say or do will be used against me.
If anyone has any advice I would really appreciate it.