Life with chronic illness

Hello. Had a very bad experience with a GP today. Seen her twice. My medical office has changed doctors frequently Didn’t want to see her again, but I’m tied to her for now because of the opioids I use. The cause of that is that I can’t really get them from other doctor according to national guidelines here in Norway, just by a pain specialist, but the one I had contact with just refused to see me anymore after two appointments saying that there’s no help for me (he had only tried two treatments which aren’t even supposed to have long term effects). I have met one doctor who saw past this and followed me up for pain relief with opioids, under the premise that I only saw him for that (which was completely fine and even preferred by me too). I prefer to see the same doctor for a specific issue anyway. If you sign out of the GP-system (a system that is supposed to provide everyone with a public (low cost) regular doctor, then I can, according to guidelines officially get opioids from another general practitioner.

She used up the whole time to talk about something that she thought was important to say. She sounded mostly like a very strict cult leader giving a lecture. I didn’t get to say almost anything, only hello and goodbye. I had things that I need to bring up, but wasn’t able to at all because of that she was controlling/using up the whole time for her lecture and I’m not good at speaking up and interrupting people.

I have tried to send an online consultation, where I’m actually able to write about my concerns and thoughts, but she didn’t reply like one is supposed to and instead told me to come in for a regular consult. Later she has indirectly said that she prefers that we don’t do e-consults. The medical office offers that kind of service, but she seemingly has just decided that in my case she will only do phone calls and meetings. Maybe phone calls will be better.

My aspergers makes communication a little more difficult, specifically I need more time to think over what I’m going to say and I need precise questions. I also have a hard time speaking up and asserting myself, which I guess isn’t only the Aspergers. I need to prepare for the consultation and know the purpose. With my multiple issues and ongoing investigations and treatments, that’s very essential for me, otherwise I might end up getting nothing out of the consult. I can’t just go and hope that they will magically fix all my issues in an appointment just by me showing up and answering a few standard questions, like maybe a fairly healthy person who has a one time-singular and common issue would do.At least that’s usually when I get the least from the appointments, though it does depend on the doctor to a great extent.

She was very critical, told me off for having had contacts with other doctors (for separate issues) and said that she would not accept me seeing or contacting anyone else than her (seems a little over-controlling for me, not to mention that I don’t think I will be able to see her solely because of her behavior (I’m not able to bring up issues at the appointments)), told me that emotions were causing my physical symptoms and that I should see a shrink and when I told her that I had and that he ruled out all psychosomatic illnesses and other mental illnesses she changes attitude and said defensively that ‘I care about how you are doing, and not about diagnosis’ (she hasn’t asked or listened to me at all about how I’m doing), told me that I saw doctors too often, complained at length about my use of medications without any specific argument against a single medication and refused to let me get a objective opinion from a specialist about my use of opioids as a tool for pain management. I need to see a specialist who knows about everything I’ve already tried and all my diagnosis, so that he can then say if opioids are best to be tapered down on given all my background history.

I don’t agree with randomly stopping all medications at a totally random time and in a random way is a good way to treat patients. I think the best thing is to talk to the patient after every new medication is started to ask them about new symptoms, perceived efficacy of the medication according to set goals, any changes in health and a thorough and relevant physical evaluation (and tests if relevant). Most importantly the patient’s complaints and observations must be taken seriously. I feel that that’s where most errors are made, that the patient isn’t able to bring up changes they noticed after taking the medication and/or these changes weren’t investigated further. That’s my experience having had significant side effects from multiple medications, but not being listened to several times. I’m not saying that all changes one perceives are necessarily caused by the medication or should lead to discontinuation, but it should be addressed. An organization here in Norway that gives information to doctors about medications says that all new symptoms started after having started a new medication should be considered a potential side-effect. I think randomly quitting all medications, should be an absolute last resort and only relevant in very few cases.

I have read the official guidelines for the use of opioids in chronic non-malignant pain that we have here in Norway and they specifically say that opioids can be used if necessary in almost all cases. Only in people with history of drug abuse to they open for the possibility of opioids not being considered as a possibility when evaluating how to manage a persons pain. Otherwise they say generally that it should only be used when other options are considered unlikely to be effective, due to the severity or type of pain (mostly severity) or due to the patient already having tried them. I have also read that it’s considered part of the human rights to offered help with pain management, not in a specific way, but in a way that is likely to be effective. From what I read it seemed that they compared withholding effective pain relief to causing unnecessary suffering, and therefore a breach of human rights. It would seem to me that choosing treatments that are likely to be ineffective or take a very long time be effective might also be a breach of the rule. Unfortunately I couldn’t find anything that specified the issue more in detail. Though it seems to me that opioids are not supposed to be ruled out as an option only based on their possibility to cause addiction, according to guidelines and the human rights. I feel that most doctors here in Norway aren’t aware of the guidelines in detail and go by a general saying that ‘opioids are only to be used for cancer patients, period.’ That being said I don’t want to be on medications where the side effects are more significant to me than the effects, but neither is it acceptable for me to have such an amount of pain where I’m not having a decent quality of life. I’m scared of being in too much pain to handle when tapering down, and not having the option to go back on them. The main reason why I’m getting them now is because I’m already on them. Every time I get this lecture though which treats me like I’m already a drug addict and takes up all the time, so there’s no time or focus on my current issues and problems and life quality. This along with the other topics above that I don’t get anything out of either.

I need the appointments to be a little more structured and concrete also, not a lot of generalized talk about her viewpoints and opinions about life and medicine. Definitely don’t need all the criticism and control issues.

I don’t feel comfortable using them anymore. I have been told that I need to get my ears checked because of ear symptoms and that I’ve previously had otitis media, but I wasn’t able to bring it up during the consult. The secretary there has previously complained about me writing to many messages to them (not that many in my opinion, and only a couple more in a very short and specific time period). I might be a little sensitive to criticism and have a lot of self-doubt already. I’m not good enough at not letting it affect me negatively.

I see less doctors in person now because of coronavirus.

I know of at least four general practitioners that I have been very pleased with.

What do you think I should do? I don’t feel like I can see this doctor anymore. I wish I didn’t need the opioids so that I wasn’t tied to using a public GP and could use a private one. I’ve had a lot of issues where I disagreed with doctors though, and many times what I suggested or my concerns where proven to be correct later. For example a specialist would agree with me or test results would confirm a diagnosis etc. If I would have given up immediately upon a disagreement, or two disagreements, even when things didn’t make sense to me at all I would have been so much worse off for it and made a lot of mistakes. I can’t sit there and agree with a doctor who says things that logically don’t make sense to me, like; ‘you’re abdominal pain is caused by alcohol consumption’, when I don’t drink alcohol. It would be a grave error from my part to not communicate that concern. Doctors not so infrequently assume things without checking them out, that’s the biggest issue in my opinion, and they’re not thourough and precise enough with their thinking and work and don’t value the patient’s contribution to the diagnostic and treatment process sufficiently (like what the patient’s can say about their symptoms, experiences, history etc.).

What I might try to fix this problem:

1. Change GP and not bring her records to the next doctor.
2. Only do e-consults further with this GP. Lie and say that you are sick or show to the law of equal possibilities for people with disabilities which says that the communication with healthcare professionals is to be made in a way that the patient has the possibility to understand the information. It seemingly put’s little emphasis on the patients need to be able to express themselves, but it seems completely reasonable to me that when one is in general entitled to adaptations in public spaces in order to get the same benefit from the experience as people without said handicap, that this would also apply to a medical consultation. If physical examination is necessary I can come in.
3. Try to get a thourough referral to a pain specialist. I will have to bring a letter listing my current diagnosis, hypothesis about cause of pain, what I’ve tried for treatments and description of the way pain interferes with my life. A diagnosed pain is more likely to be treated properly, even though undiagnosed pain is really supposed to be treated as well.
4. Get a proper diagnosis about my pain.
5. Try to find a private pain specialist to see.
6. Try to find a private doctor who can prescripe opioids.

Telefonsamtale med gynekolog.

Har blitt diagnostisert med pudendal nevralgi. Årsak ukjent. Dro til gynekolog for å få vurdering i forhold til om endometriose kan være årsak. Han oppførte seg ganske uprofesjonelt i mine øyne.

Ringte klinikken for å fortelle om fler anfall med nummenhet, murring i bekkenet og løs mage etter besøket. Hun sa at det er ikke uvanlig å ha uregelmessige blødninger ved bruk av Cerazette (jeg fortalte ikke om blødninger). Nå kunne det jo være at blødning var på vei, men den typen symptomer kan også skyldes andre ting. Etter litt om og men så sa hun at hun noterte det ned i journal og skulle be han ringe meg opp. Nå var det slik at jeg fikk blødning to dager senere, så da var anfallene med nummenhet sannsynligvis relatert til det. Ettersom jeg vanligvis bare får det under menstruasjon, at jeg også hadde hatt litt smerter (som jeg vanligvis ikke har i forkant av menstruasjon) og non-stop diare, så ble jeg anbefalt å kontakte dem for å høre om de kjenner til noe som kan skje etter en gynekologisk undersøkelse som passer med mine symptomer.

Han ringte meg opp og sa bare at han tenkte en diagnose jeg har fått fra før er feil (endometriose) og gjentok flere ganger at han ikke visste hva han skulle gjøre med ‘smertene’ mine, når jeg har sagt spesifikt til han gjentatte ganger at problemet jeg kom til han med var anfall med nummenhet i området pudendal nerven gir følelse til. Da jeg spurte han om han mente jeg skulle bruke Cerazette frem til påske og så vurdere laparoskopi eller, dersom hensikten var å være blødningsfri frem til påske og så vurdere laparoskopi; når skulle jeg isåfall vurdere å bytte type hormonbehandling og til hva? Dette svarte han svært vagt på. Sa noe om å vurdere det i januar/februar og at jeg bør oppleve at blødninger blir lettere og kortere og ‘dersom det er bare tull med Cerazette’ så er det jo klart at…’. Det ga meg ikke noe mer info enn at jeg må kontakte ham eller noen andre på nytt i januar/februar.

Forstår ikke at det skal være så vanskelig å være en flink og empatisk lege.

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