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.
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.