Endometriosis UK
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SO fed up with how the drs have treated me (VENT)

Hi Ladies

I do usually have a fairly optimistic outlook and I tend to focus on what I can do- I am a fixer type. But I got my GP practice notes today and I just feel so angry, fed up and deflated by it all. I'm sick of fighting to try and convince the drs that that there is something wrong with me. Even now that there is irrefutable evidence that there is something wrong- I'm still getting no real help and, even worse, all I am asking from the doctor is for someone with endo knowledge to sit down with me and explain my diagnosis, prognosis and treatment and they are refusing this.

There are the points that I'm most annoyed about...

It heavily implies in my notes that I have some kind of health anxiety/hypochondriac. In one referral I am actually referred to as an "anxious lady". I actually cannot express how much this annoys me. That there's this dichotomy in drs head between the physical and mental is just absurd. We cannot separate the two. Stress is a risk factor for cardiovascular disease and stroke. Are we saying these are mental health issue and 'in people's head?' Should someone who has had a stroke not have medical care because it's a stress related illness? Of course not!! It's just that stress (in the mind) causes a real physiological change (in the body) they are linked, they are the same thing.

In this particular occasion, where the GP referred to me as an anxious lady, I had originally gone to the GP because I was seeing a nutritionist (I'd been told my abdominal pain & boating was IBS so I was paying to work with her to try repair my gut) the diet the nutritionist had me on wasn't helping at all and she wondered if I had an underlying infection, she asked me to ask the GP to test me for a few things- that's the only reason I went. While there, the GP asked in she could feel my stomach, which she did and she asked if I would go for an ultrasound. I got the blood test I asked for but she didn't tell me that she also tested my CA125 levels. I went for my ultrasound, I thought of my STOMACH and while there, they started talking ovaries and uterus etc. I was a bit thrown as my reporoductive system had never been mentioned at all. I was told there and then I had tumours which were fibroids- I had no idea what all this was so had to google it all once I got out. I went back to the GP to discuss my results and it was then she told me that the blood test she had taken (without me knowing) was actually a measure for ovarian cancer and as it was raised, along with the ultrasound results, I was showing markers for ovarian cancer. This was 3 days before christmas and I was told I'd need to wait a month to run the test again and if it was still raised, I'd be referred urgently to gynae. I know now all this was information was wrong but at that moment, I thought a Dr doesn't tell you they think you have cancer unless they're pretty sure you do. I had been ill for nearly 18 months at that point so I thought it was game over. I have studied human behaviour for 20 years and I can tell you, a response of anxiety in that situation is completely normal! The thing is, I wasn't hyperventilating or panicking at all. I think I cried a little and was mostly really stunned. I am so annoyed that she described me in this way. I've worked in healthcare for 15 years and I know exactly what we mean when we write things like that in referrals.

In another referral, another GP mentions several times that I requested an HIV test despite there being no risk that I could have contracted HIV. He doesn't state why this is important but it was a referral due to my chronic fatigue- him mentioning twice that I asked for an HIV test doesn't make sense unless he's implying that I am a bit anxious that I've got an illness and I'm looking to be tested. i.e. classic ocd type health anxiety. The most annoying thing about this is that it was another GP who mentioned to me about HIV- I'd gone to him with all my symptoms, getting nowhere as usual and he said, "well the only other thing I can think of is HIV" and then after thinking for a while he said but you don't really meet the profile, so it's unlikely. I was getting a blood test anyway and so I asked the nurse could she also test for HIV as the GP had mentioned this. As unlikely as it was, I thought it's best to just rule it out, I'd never in my life been tested so why not? This same GP said to me on another occasion that I had a habit of seeing different GPs, as though I was up to something. He seemed to be unaware of how difficult it was to get an appointment and you just take the soonest appointment with any GP otherwise you're waiting 3 weeks.

The other thing is really getting to me today is that once I saw gynae about my 2 fibroids, I was repeatedly told they are not causing my symptoms- this is in my notes too. Then when I had my lap I was told I didn't have endo- just the 2 fibroids were found and again they were not causing me any issues. I can see that my larger fibroid was initially 5cm (dec 2015), then at the lap it was 7cm (April 2016) and now it's 13 cm. It's growing pretty steadily. In the lap notes it states this fibroid is growing in my pouch of douglas. All my issues are gastro related and back pain, alongside chronic fatigue- anatomically, doesn't it seem possible that a very petite person (I'm 5'1" and a small build) would have pain issues with even a 7cm size growth pressing into her colon/lower spine?! Now I'm being told that, yes, all of my issues are from this now really big, "chaotic" and "bizarre" fibroid thing with endo in places that no one will actually tell me. But there's no retraction of- oh sorry we thought you were an anxious hypochondriac just trying to get a diagnosis of some sort and it turns out that yes there is actually something wrong, oh and we actually found it nearly 3 years ago when it was a third of the size and a lot less of an issue- oops- maybe we could have done something then and prevented you from having 3 years of hell. They are not even discussing removing it with me- instead I've been given a load of more inaccurate information about zoladex shrinking it by a gynae who (ironically) specialises in ovarian cancer.

And breathe.

I actually don't know what to do with all of this. I know I've been badly treated but I don't really know what I want. Well, I do want an endo specialist to meet with me and explain my diagnosis and tell me whether or not they did find endo and what they expect zoladex to do for me. I also want it to be explained to me why they are not thinking of removing this beast within me. But so far I've been told that although the endo specialsist consulted on my case and therefore was part of the diagnostic and treatment planning process, he can only meet with me if I'm referred to the centre and for this, I need to be referred by a gynae...so I'm back to the guy who has missed the problematic fibroid and endometrosis and has treated me like I'mm a child.

If you've read all of this, you deserve a medal. I just needed to get all that off my chest. But if anyone has any advice, I would really appreciate it.

29 Replies
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Wow!!! Can you change practices? I know it’s hard to do but on the bases of what you’ve wrote I think it might be a smooth transfer. Then once you have, book an extended appointment with a female doctor - I know it shouldn’t matter about gender but in my own experience the female GP’s tend to be a bit more sympathetic and clued up on endo and fibroids. Show them your pain diary (if you have one) include your recent tests for estrogen, your research file and ask to be referred to an endo specialist asap. Do not move from their office until they agree; be forceful.

You shouldn’t have to deal with a lot of misinformation and I would stress to them what you’ve been told in the past and how this has impacted on your health as well.

Anxiety goes hand in hand with these illnesses unfortunately along with depression so they shouldn’t use it as a means to fob you off as a hypochondriac. Clearly the results from your tests prove this and a 12cm fibroid would definitely have an impact in your ability to function.

Do you have someone you could take with you? Sometime having support from a family member who can validate your symptoms and can emphasis how you aren’t coping can help.

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Thankfully, I am in another practice to the 2 GPs that implied I was anxious. It's just upsetting to read that's how I've been viewed and I wonder how this has shaped the consultant's impression of me. It makes more sense that the gynae said they'd do the lap top "ease my mind". I did wonder why they thought that about me.

As for the referral to the specialist. In my nearest centre, it has to come from the gynae, the GP can't refer. So I'll need to get back in touch with the gynae, the one who has all the mistakes and seems to not be very knowledgeable about endo. I'm going to write a letter rather than phone as I find it exhausting phoning and getting passed from pillar to post.

My husband usually comes to appointments with me which can help for support but neither of us are particularly good at challenging medics. My husband is particularly non confrontational. It doesn't help that I've been so unwell so haven't been able to think clearly. It's usually not until afterwards that I realise something wasn't right. I'm actually a clinical psychologist (or was) so I've worked as a Dr role in the NHS for years, this can sometimes help, the drs will sometimes treat me with more respect when they find this out (which is ridiculous). I think that's partly why I know how I'm being portrayed in these referrals. I've seen it so many times with patients in services I've worked in. People do get branded as "the worried well" or worse and they don't get taken seriously. Then the life the patient shouts about their symptoms and the more help they ask for, the more they confirm the drs perception of them. You just can't win.

I'm definitely going to give myself a day or so then try get a letter written to the consultant.

Thanks for replying (and reading). X

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Yes write it all down and use you profession to your advantage; shout it from the roof tops if you have to. Remind them at every appointment that you know the system and tactics.

Sometime having it in black and white is best, saves them doing a full write up.

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Oh and make a complaint to PALS. They will be able to advise you and help push forward; you need a little team behind you.

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I'm in Scotland so it's PASS here which is run through citizens advice bureau. I've contacted them and they were totally unhelpful. I hoped they'd contact the consultant for me. But they just told me to contact my GP, which is already done and the GP can't refer me. Round in circles.

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Fuming for you! What is the point of the service?! I’d try again and ask to speak to someone higher up, there must be something they can do especially if it’s a formal complaint.

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Try sending a complaint to NHS ENGLAND, they are the main body of the NHS as far as I’m aware. Here’s the link

england.nhs.uk/contact-us/c...

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NHS scotland is it's own separate entity, not under NHS England, that's why we have some different ways of working. It would be fine to complain to NHS Scotland- though I would just complain to the individual health board. I just was hoping it could be resolved before going that far. I know how seriously complaints are taken and I would rather it just got sorted out.

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Please write them a letter of concern, let them see how they failed you and how you were justified to feel a little anxious even if you didnt show it they have made you feel like a pest! One who saw different doctors to try and wrangle more tests, personal comments like this should not be part of their protocol to record, it sways other Drs and clearly it slowed your treatment.

A black mark on your name so to speak.

Don't change, write the letter and wait and see. Sometimes an apology or accepting your voiced concerns may be satisfying to you.

My case is a bit like yours and the failed me so I paid for a total hysterectomy.

Disgrace really that I was failed so badly and was riddled with endometriosis.

Good luck Weekari.

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Thank you for your reply.

How awful that you had to pay for own hysterectomy. I'm so appalled by this. I really hope you got relief from the surgery?

I will definitely take your advice. Like you say, even just an acknowledgement or apology would mean a lot.

X

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Hi weekari where are you in Scotland?

Is it a possibility that you could write to the NHS Board and put a letter of complaint in, that way it will all be investigated thoroughly (I would like to think) and then you might have the answers you are looking for? x

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It is NHS Lothian. I could put in a letter of complaint, the more I think about it, I think it's probably what I'll do. I just want some answers really. Mostly I just want my diagnosis explained to me by someone who a specialist in endo. If hoped that could happen without a complaint as its a lot of extra hassle.

X

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Sounds like you are having a nightmare and have tried to get the answers you are looking for. The only other thing I could suggest is to go private but then really who can afford that? I think a complaint letter may be your best option as they may write to you with a detailed response. Hope so anyway x

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Or write to the manager of your GP surgery? x

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Oh my god, can't believe how badly you've been treated! Don't worry about venting on here, we all understand and everyone needs to vent now and again! Seems a bit strange to me that you can only get to see an Endo specialist via consultant to consultant referral, but I don't know how the system works in Scotland. As for complaints, I'd go directly to the hospital complaints team as well as NHS Lothian, that way you've covered it all, and the hospital may deal with it quicker than the Lothian will, and Lothian would have to contact them anyway I'd imagine.

Hope you get it sorted and get he treatment you so desperately need.

Xxxxxx

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Hi weekari,

I see you aren't doing so well at the moment. What did they say about the MRI you had? I really feel for you.

Could you pay and get all your notes and then pay for a private consultation with an endo specialist and go from there. X

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Hi

Yes I'm just fed up with the system really.

I got my mri & ct scan results. I was told it wasn't a cyst but a "bizarre and chaotic" fibroid that's growing from my uterus into my pouch of Douglas. It's 13cm and has a 7cm leison within it that contains blood. They said its got endometriosis on it. Basically they've never seen anything like it. The treatment they've offered me is zoladex for 6 months and then "we'll see". I agreed with it all at the time. I was pretty shocked with what he told me so I didn't really think of questions until afterwards. They said removing it would risk hysterectomy. I didn't even get the chance to consider it. They seem to just assume I wouldn't want to take that risk (I probably would if there would be a high chance of resolving my issues).

I actually have all my notes. I got them fairly easily, quickly and for free. I never thought about seeing an endo specialist privately. That's a good suggestion. Do you happen to know of a good one? I'd be willing to travel.

Part of me just feeling like giving up the fight and just playing the good patient bit in my gut I just know it's not right. I'm sick of it all being such a fight.

Thanks x

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Im still fighting for a diagnosis so i feel your frustration. Im being sent for an MRI after i saw someone who seemed to know the most about it so far. Shes checking for deep endo on my bowel.

Im not sure in regards to good endo specialists but as long as they are bsge i think theyve gone through the appropriate experiences and surgeries to become fully trained and specialized. My plan after my tests is to be referred to Surry centre, my doctor is more then happy to refer me too but the lady i have just seen basically said id have to go to one if i have bowel involvement anyway. Please let me know how you get on with it all xx

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Hi littlebirdy34,

Can I asked where you’re based?

I’m South west England and at a similar stage to you, just had 2 MRIs and waiting for results on a similar prognosis. I’m wandering if Surrey is the nearest specialist to me?

Hope you’re well

Xx

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Im just outside Brighton. Have done a little research and would like to try Surry if I can. Where abouts are you? X

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I live in Worthing, we could be quite near each other.

I should start researching really as gynaecologist suspects bowel involvement.

Fingers crossed 🤞🏻 we both get sorted at the right place xx

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Oh wow, im under Worthing for everything as im right on the border. Have you been diagnosed? X

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No not diagnosed. Basically been back and fourth to drs for the last 17 years, all relating to my cycle or menstrual symptoms, hormonal troubles (emotional/mood and pain) etc. Had a few ultrasounds over the years, showed nothing. I kind of just put up with it for years.

Only really just been taken seriously as I’ve tried a million contraceptive pills/injections/had 3 babies. Still terrible cycles along with some awful side effects.

Then earlier this year had about 6 weeks of constant severe pain and went to a&e. (I’ve also got a lump in my abdominal wall that appeared after my c-section 2 years ago and had been growing since)

I was sent for an MRI 5th aug, was waiting for results (told a lap date would set when results were back), chased them up after 5 weeks and was told I was booked for a further mri (had 10th sept) as they needed further imaging/imaging of a broader area. I’ve heard nothing still and I’m quite annoyed as was told my first one was put through as priority.

Where are you with it all? xx

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Gosh sounds like a nightmare.

I came off the pill last August because i seemed to be having more pwriod pain then normal. By nov i was in agony, constant blood in urine, severe left sided pain deep in my hip, nerve pains down my legs etc. Was given so many pain killers which i took, unfortunately i ended up with a large fecal impaction in my bowel so was in hospital Christmas eve. Ive had 5 ultrasounds, colonoscopy, laparoscopy (where my bowel and bladder wasnt checked) numerous tests and currently waiting for an MRI as a new gynae suspects bowel involvement as i get rectal bleeding on my period. She has said she will more then likely go back in herself.

Im tired of fighting but im never giving up. The pain can be so bad and i bleed so heavy too.

Please keep me posted how you get on x

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Will do, and you.

Can I ask if you’ve seen a female gynaecologist under dr pakarians team?

It’s all horrible isn’t it. And you’ve already been through such a lot with all those investigations.

I’ve got the mirena coil so don’t actually have periods anymore and I think it actually is helping me.. just think all my symptoms would be a lot worse if I didn’t have it. I get the pelvic/hip/back/leg pains, bloating, pain and irritation around the lump I’ve got, it itches and stings leading up to when my period should be and sometimes the surface/skin goes pink and mottled. I can’t open my bowels unless my feet are on a stool even though it can be urgent and/or loose.

I used to get such excruciating pain leading up to and on my period especially when opening my bowels and would bleed heavily for my entire 8 day periods.

Have you would you consider the coil after another surgery?

xx

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Yes the coil has been mentioned.

Mr pakarian did my first lap but i wasnt impressed at all. Ive seen two others since. My doctor is willing to refer me to a bsge centre whatever the outcome but I def want the MRI next.

Will let you know how i get on xx

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I feel your pain. I am currently waiting to see the gynie again after a failed endometrial ablation. I have 4 fibroids that are 7cm each and have repeatedly been told by the gp and a consultant that fibroids don't hurt and basically I just have woman's issues. Finally spoke to a nice gp and consultant who both agree it's probably endo and that fibroids do indeed cause pain especially that size. It is so frustrating that we are told it is woman's issues and that we as nuruatic. I pretty sure if it was peruida and a bit of pain we would all get in just fine. Rant over .

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My thoughts exactly. It really does have a sexist feel about it all. I've just finished reading 'ask me about my uterus' which covers a lot of of this. Stories have shown that despite women usually having a higher threshold for pain, after surgery, men will be more likely to be offered painkillers, whereas women will be given sedatives. We're just seem as hysterical.

If you complain and fight, you're seen as hysterical and if you just be the good patient, you get ineffective treatment that just allows the disease to grow. Your famed of you do and dammed if you don't.

It makes me so annoyed. Though I better not express that anger or I'll be seen as an unstable woman!

Xx

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Ha I shouldn't laugh but it is almost comical. I once had an appointment where I was talking through my history and said I had my son with no pain relief yet when I mentioned the pain I was in now was told by the doctor (a woman) that some woman experience painful periods and to take some paracetamol. Oh silly me why didn't I think of that!

X

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