Feeling let down by doctors

[AnnaH]

Isotope,
I had an opposite experience to you: I had a doctor tell me that I couldn't possibly be pregnant, when I knew I was. He told me the negative tests were infallible; I told him that no test was infallible. So he referred me to a psychiatrist for 'pseudocyensis' (phantom pregnancy).

The shrink said "Have you any idea how rare a genuine phantom pregnancy is in a human being?" Apparently, so rare, few psychiatrists have seen it in their entire careers. He muttered about my GP and then referred me to the gynaecologist. But before I got to see the gynae, I had changed GP and the new GP, just to shut me up, waved one of those ultrasound wands over me. We heard a baby's heartbeat, clear as day!

My daughter was born a mere 6 months later.

I am not sure that was quite when my mistrust in doctors began, but suffice to say I have a ton of bad experiences to add to that, mostly to do with my knowing my own body and doctors assuming I didn't. Do they think medicine is some arcane knowledge that no mere mortal, no matter how well educated, could ever possibly understand? Admittedly, I didn't know I had HMS/EDS until I was diagnosed, but for years, I've known there was something wrong with me - no one gets that number of things wrong with them without there being some unifying, underlying cause.

[mcbeauty]

Yes!

[mcbeauty]

Doctors drive me nuts sometimes with the "know it all" attitude! My mother was a doctor, so I have some knowledge from her and I can research anything myself with the internet and a medical dictionary. Occasssionally I have been wrong due to some missing data but not often!

The one I found the most outrageous was a doctor I saw for a smear test. All the women in my family get pain when they ovulate, mine is quite severe for a couple of days on whichever side the egg is being released, as bad as though completely different to bad period pains. We are also susceptible to developing ovarian cysts, both myself and my sister have had them.

Somehow this came up in conversation with this doctor, that I always know when I'm ovulating due to this pain. She immediately dismissed this and insisted there was no such thing and you couldn't possibly know when you're ovulating and there is no pain! I insisted that it was the case and is common but there was no arguing with her opinion. This despite the fact that it's a very well documented phenomenon in some women, pretty much every doctor and all gynaecologists know about it and there is a medical term for it (mittelschmerz) and about 1 in 5 women experience it to some degree! Flabbergasting!

[isotope]

Well, similarly Anna (and I didn't mention it because I didn't feel patronised as such) I went to the doctor and explained that 3 years before I'd had a miscarriage, after 3 years of trying, failing (and going slowly mad) I was pretty sure I'd got pregnant again only to suffer sudden bleeding that wasn't like normal bleeding. It was very similar to my previous miscarriage. Could she please confirm that this was in fact another miscarriage.

Yes, she said - without any examination but just on my say so - it seems likely you've miscarried. If the bleeding doesn't' stop in a week or two come back and we may need to do a D&C.

Off I went with my life, mourning, but doing nothing special, lifting freezers in and out and suffering more bleeding.. but that's ok, it's all got to work it's way out somehow.

Eventually after a couple of weeks more bleeding (way beyond the timescale of previous miscarriage) I went back and happened to see another GP in the practice. 'It's been 2 weeks', I said,' and I'm still bleeding just the same and I really haven't been feeling well, it's almost like I'm pregnant and getting morning sickness, this is very upsetting'.

The doctor looked at my notes, then asked quite shocked why I hadn't been sent for a scan before (which I couldn't answer). He said most likely the miscarriage was 'incomplete' and I'd need a D&C but to find out what was going on I was sent for an urgent internal ultrasound.

Which… as you may have guessed…. showed that I was STILL PREGNANT! To say I was shocked is an understatement. To say I was scared doesn't do it justice, I was still at massive risk of losing my long long awaited baby due to the big blood clot causing the bleeding. But I was also angry, because once the doctor confirmed I wasn't pregnant I had done inadvisable things like moving kitchen equipment, thereby putting my baby at massive risk.

Luckily she turns 4 in a few weeks, but still…..

Lots of doctors are very talented and very conscientious, but there are still those few who will always let the side down!

[AnnaH]

Actually, I seem to remember an obstetrician friend of mine telling me the moving heavy things = miscarriage is pretty much a myth. The real reason its inadvisable is that the relaxin hormone you produce during pregnancy means you're at massive risk of doing your back in. A risk which I presume is much greater if you have HMS.

But I only mention that so you perhaps don't feel so bad - its not medical advice. And your child is now 4 years old and your back is OK, so no harm done. But I understand why you're annoyed. A friend of mine in that situation went on holiday and got drunk practically every night, believing she'd lost the baby, and then panicked for the rest of the pregnancy when they found out she was pregnant the whole time. Now that was scary. Her kid is also fine.

Perhaps doctors should never be all that certain that people are/are not/can/cannot be pregnant?

But back to our usual program, about feeling patronised by doctors, I feel we're in a little danger of implying they're all rubbish and not to be trusted. I am aware that some of you reading this are doctors and all of us need doctors to lead a relatively comfortable life despite HMS. So how about some happy stories about good doctors, who really went beyond the call of duty?

I'll start. I was 11 and on holiday in Austria, on a campsite. I was very clumsy and when I tried to take a short-cut between the tents, I tripped and embedded my knee on a tent peg. Of course, I was screaming in panic and pain, but an Austrian doctor heard me and came to help. He cleaned my wound, which was deep into the pad of my knee and was able to fix it with steri-strips and a compression bandage so I didn't have to go to the hospital (which was a long way away, scary and expensive). Then he went to the pharmacy and paid for a tetanus jab out of his own pocket.

Medicine in Austria is very expensive, and our insurance would have been a nightmare of paperwork and who knows when we'd get the money back. And my family were not well off. This doctor could have charged us the equivalent of a couple of hundred pounds for emergency, out of hours treatment, the dressings and the tetanus. But he would hear none of it. "We can't have a little thing like this ruining a child's holiday, can we?" he said, and wouldn't even give my dad his address so we could pay him back.

[curlysue]

Hi Anna,

I think it's a great idea to share stories about good doctors who have given us really positive experiences... but perhaps this would be best in a new thread? Just because it's a little off-topic and I think it's important to have a space where we can all vent about our bad experiences. It doesn't mean any of us think or want to imply all doctors are rubbish and not to be trusted. It just means that when we have a bad experience we can share and get support. It's often part of our HMS/etc journey that we come across bad attitudes in doctors along the way to finding good ones, but unfortunately some of us have issues with doctors that are ongoing.

I'm sure those reading this thread who are doctors are not offended by the personal experiences of people on this forum. They would probably be in agreement that not all doctors go about things the right way. In fact it could even be a learning experience for some.

Personally I would like this thread to remain about sharing negative / difficult experiences and would prefer it if positive experience stories moved to a new thread (would make them easier to find too), but that's just my opinion.

Mods?

CSx

[AnnaH]

You're probably right CS, but it gets me down sometimes reading about the tales of woe (not that people shouldn't be sharing them). I have found the thread you mentioned and I think I'll have a read of that next time I feel depressed!

[cracker]

i sometimes feel that consultants dont listen to me sometimes

[cracker]

sending big huggles to anyone who having a bad time x

[serenity79]

My GP talked down to me for the last time yesterday. There are two doctors at the surgery and neither have a clue. The other one in the surgery once refused the district nurse coming out to take my blood when I wasn't well enough to go down because that service was 'for people with mobility issues' My usual GP, upon being told I'd been diagnosed POTS, SHRUGGED and said 'what do you want me to do about it?' then said all I needed to do to treat it was 'go for long walks' - as I was struggling to get to the door on crutches (I had to go on crutches that day rather than use my wheelchair as I was being seen in their sister surgery in the neighbouring village that has NO wheelchair access at all - and even in the 'newer' building the disabled access is rubbish. NO disabled parking, the ramp is usually blocked by cars and the heavy doors need to be held open, so my husband struggles to hold them AND get me through at the same time - no one ever comes to help, the receptionists just sit and watch)

Then yesterday I was voicing my concerns about my digestive issues and how I often find myself physically feeling unable to eat, and the rest of the time I have no appetite. He told me all I needed was '3 square meals a day' and I'd basically be all better. Also he wasn't happy seeing me in my wheelchair and told me I shouldn't be using it - I explained that my legs were so bad at the minute that I had no choice - he started going on about how I'd be in a wheelchair for life if I didn't get out of it now.... he doesn't think I know that's a possibility? But I can't magic myself being able to walk just because I want to, I bet we all wish we could. My hips won't stay in just because I ask them nicely. (But oh, according to him you can't dislcate your hips anyway)

He was just so disrespectful and I've taken their c*ap for the last time. As soon as we left their surgery we went into town and I registered somewhere else. Just hoping my new doc is nice

[madmum]

Had my worse ever appointment today. A complete moron of a consultant who has taken old notes against me. He has refused me any help and discharged me. I am left with severe knee pain,a collapsing knee,severe sleep deprivation and feeling so depressed I keep crying. I have hit bottom,no energy left. Have had to put in yet another complaint.

[PhillMc]

Madmum - sending hugs xx

I had a really rubbish appointment with my GP last night, i went to see him to discuss my pain levels and hopeing he could help find a solution to continually popping pills. the first thing he said to me was 'How do you have so much pain, you have Benign Joint Hympermobility, that doesn't cause any problems, it's not a disease it's a varient of normal' ARRRRRRRRRGGGGGGGGGGGHHHHHHHHHHHHHHHHHH, so even my diagnosis is stopping me from getting help! The only good thing which came out of it is that he said he would write to the local pain clinic for me, i really hope i get this appointment with Prof Ferrell soon or i may scream!

[bendyneck]

Good luck with your new Doctor Serenity, hope it goes well for you. It's very brave to try someone new!
So sorry you've had a bad appointment Madmum, I really know how you feel, sending gentle hugs to you.
PhillMc, how frustrating, it's typical to feel once you get a diagnosis you are going to make some progress but unfortunately you end up feeling more frustrated than ever.

I am really at the end of my tether. I had to wait two months to hear from the PCT that they were not going to fund a referral to Prof G, my GP then asked if I wanted a referral to a local rheumatologist instead. I said I would as long as it was someone who had a special interest in HMS. that was on 12th July. I hadn't heard anything so I rang the surgery to ask about the progress of my referral, only to be told by the GP's secretary "oh a letter has been dictated but I haven't typed it up yet!" AAAARRRGGGGHHHH!!!
In the meantime I haven't been able to work for the last two years and now we are having to put our house on the market because we can't afford to keep it up. There is no way I would qualify for DLA, I just don't know what the situation is regarding benefits. I am completely distraught, but I just don't have the strength to fight. I have spent three of the last five days in bed with a migraine. I was taking my pulse during migraine and it was hovering around 98 for most of the day. I have also started taking it when I wake up in the night, usually drenched in sweat, and it was 106, 88, 96, 88, My normal resting heart rate is about 74.

I just don't know what to do. I had the euphoria of finding this site and that lightbulb moment of everything falling into place but the struggle to get some recognition and help is just getting me down at a time in when everything else in my life also seems to be falling apart.

[PhillMc]

Bendyneck - im so sorry you can't get to see Prof G, fingers crossed the letter gets typed up asap and gets sent out for the rheumy, it doesn't take that long to type a letter!

[Spireite]

Bendyneck, I can only sympathise. It took my GP practice four months with a lot of chasing to get round to writing a referral letter!!! How can it take that long to say 'please see this woman we don't know'? It's a pity there are no targets for that! (Then I was refused and it took the GP practice two months to tell me I'd been rejected!)

Keep fighting!