This is a long one, really sorry and for those of you who take the time to read it thank you in advance!!!
I got sent to urgent care the other month with breathing difficulties.
All was fine, they weren't sure what was casing the symptoms. I did get to meet a lovely cardiologist.
He sat and listen to my whole lift story as he was really into fitness himself, he took the time out of his day the day after to call me. He said he is going to call me every 2/3 weeks until we get to the bottom of this, he is going to be like a dog with a bone! He also said he won't mind stepping on anyones toes trying to get me to see the doctors that I need to see because he wants me back on my bike doing what I love.
It was like a breath of fresh air having someone fighting my corner.
Also around the same time I got my endo specialist app. They put me down for another lap to check to see if the general gyne has missed any endo and also to remove endo from my bladder, cervix and also to check my diaphragm because one of my main concerns was that endo was affecting my chest.
My chest symptoms always start up about 10 days out from my period. A really bad cough that tases like metal, really bad right sided stitches and right sided shoulder pain.
Ive gone from being a semi professional athlete (cycling & running) to basically doing at home gentle workouts and on a good day being able to cycle 5/6 miles twice a week.
Bearing in mind I use to cycle about 150 miles a week and trained 5/6 times a week and races competitively, so what I'm doing now is nothing in comparison.
The endo specialist referred me to thoracic surgery and I had my app last week. I was actually looking forward to this app especially after meeting the endo team and having the lovely cardiologist on my side.
How wrong could I be!! The app was a complete and utter disaster.
He basically laughed in my face, he kept focusing on the fact that I was super fit and doing a lot of exercise prior to 2017! I kept telling him yes I did do a lot but I can't do that now.
Told me I need to learn to take it easy, that really pissed me off because it sounded he was portraying me to be some sort of stressed out anxious mess and that couldn't be further from the true! I work really hard on my mental health, I do yoga, I do headspace, I run my own business so I can take time off when I need to. Life really is pretty chilled out.
Told me my CT scan was clear so no need to move forward with another testing, even though endo doesn't always show on a scan!
Told me I didn't need a broncoscopy because I was coughing up blood. Even though my cough tastes like metal and it keeps me up all night around my period. And I know endo won't always show on a bronchoscopy.
He then kept blaming my cough on the cycling, even though I told him I took a whole year off cycling and training and the symptoms kept happening.
made me feel like my symptoms were psychosomatic and he implied that seeing all the specialist is stressing me out.
Told me not to talk to anyone girls on the forums because it's just causing an influx of girls coming to see him that don't have thoracic endo because it's so rare. I did say well if you don't investigate any of it then it will remain a "rare" thing. I said if you all look into this more then it might be more common than you think!
He knew I was not happy that he was just going to "do nothing" so he said ok I'll give you a test walking on a tread mill which I know you will fail because you are fit.
Then I had to sit and answer question about why I feel I need to exercise so much, started telling me it sounds like it stems from child hood and am I trying to impress my parents because they were really good at fitness!!! Again making me feel like all this was me making myself ill.
I explained I just absolutely love exercising and I really wanted to go to elite level and it's sad I can't now.
RANDOMLY told me he was going through a divorce and his kids like exercise!!!
Then I was told even if he did do something about this and he did find endo, he might not be able to do anything about it. I said yes but I would at least have an answer. He said it's an issue that I need answers so bad and I should just start learning to live with this!!!!!
I was RAGING by this point as I had to sit and listen to him for 40 minutes!!!! He then begrudgingly agreed to wait and see what the endo specialist found during my lap and go from there.
I left that room and he told me "I'm on your team" One word sprang to mind "PATRONISING"
If a female olympic athlete was sat in his room, do you think he would put her through all that and tell her that maybe she needs to live with it and stop "doing so much exercise"? Or do you think he would really try and get to the bottom of it for her and get her back into the Olympic team? I think he would do everything to help her. So why should I be any different?
I feel like I need to complain about this, which is not a nice thing to go through as I already had to complain about the general gyne that I done my lap in 2019. She told me I had no endo symptoms even though I had loads, told me you only get endo symptoms a week after your period and told me to get pregnant and it would go away.
Got my lap and low and behold I had endo in three places. they removed it from my uterosacral ligament and left it on my bladder and cerix. Then discharged me and refused to send me to the specialist! I had to complain to PALS to see the endo specialist.
I have seen over 12 specialists and the two doctors I have to complain about are "endo" related!
I also cannot wait to speak to the nice cardiologist doctor because I know he was also so extremely mad at what I had to go through at that app. I have a feeling there will be some serious phone calls going on between doctors!
Any advice? Have you been through similar with thoracic surgery?
HELP xxx
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