"Surgeons treating condition as 'unlikely' due to their 'experience'."

About: Ipswich Hospital

(as the patient),

I had surgery mid last year, after always having severe cramps, periods. Ultrasounds/blood tests always showed up clear. Before I was booked for surgery I had the doctor say to me - it doesn't sound like endometriosis, but seeing it's affecting your day to day life we will put you on the waiting list for surgery within three months.

The day of surgery I was told again how unlikely it was that they would find anything, and surgery should only take up to 30 minutes. Surgery ended up taking 1-1. 5 hours as they had to remove a cyst off my ovaries and remove the moderate endometriosis that was found. (Although it was originally considered ‘unlikely’ it turned out I had a moderate case of it). Anyways, I obviously knew little about it as they didn't expect to find it, and I got sent straight home after I ate something, not knowing any post-op details, what I should and shouldn't do. Just got told to go back onto the pill and have my period every 3 months. Also after telling them I was allergic to Codeine (I believe that it's written on every page in my patient file) I got a script for pain relief, which I luckily looked at before purchasing and it had 'Codeine' in the pain killers.

About 3-4 months after surgery I noticed a lump in my bellybutton. (I had keyhole surgery, so 3 incisions, 1 of them in my bellybutton) After getting an ultrasound, I was shocked to find out that I had a hernia that had been caused from the operation.

I started getting the cramps and severe pelvic pain back about 1-2months after surgery it then got worse and worse. Felt like I hadn't even had surgery. 6 months later at my check-up appointment I made it clear on how bad the pains have gotten again, that it was affecting my work life and that it kept me curled up in a ball. It was the same pain as before and not to mention I have been constipated since the surgery (I would think that would raise some sort of concern given my symptoms and diagnosis). A patient knows their own body better than anyone else! The surgeons at the check-up appointment dared to turn around and say that in their experience it's very unlikely that the endometriosis had come back, and that they had removed all that they could see. They suggested that I didn’t really have the symptoms of endometriosis so maybe the endometriosis was never the cause of the pain in the first place. All they could think of doing was referring me to a different surgical clinic in Brisbane to get a second opinion. The response made me angry and I was in tears, to hear that they were going to do nothing and just acted like I was full of it. It seems to me that they obviously aren't very understanding, and it makes you feel like you are just completely wasting their time, when all I want is to have someone do their job and actually figure out the cause and stop the pain!

I started to give up hope, but the pains didn't get any better. Towards the end of the year I started to notice a bit of bloody discharge, which then started to get heavier and heavier. I was still taking the pill every day, I shouldn't have been bleeding in the first place but it lasted 5 weeks. The bleeding and pain started to wear me down completely, constantly making me feel sick. I've been dizzy each time I get up, pains got so bad at work that I was going pale and nearly fainting. I had to leave my job the beginning of the year as it got too intense to drive or get out of bed.

I went to my local doctors when I started having discharge, all blood tests came back clear, my ultrasound came back clear, however my CT scan did NOT come back clear! It showed inflammation, and soft/stranding tissue around my Rectum, Pouch of Douglas and my Cervix/Tubes/Ovaries. Which shows a likely possibility that the endometriosis has spread quite severely and is likely that I have adhesions latched onto things it shouldn't be. This all makes sense from the pain, abnormal bleeding and constipation.

I bet my condition has gotten worse, than it was when I had my check-up appointment 2 months ago. But no it was so 'unlikely' for it to come back. When really it has come back and so much more severely. I think that if they actually had looked into it two months ago, I bet it wouldn't be as severe as it is now. I am young, having to go through another intense surgery that's hard to treat at this stage. All I wanted was children, and all that's being suggested is a full hysterectomy. It has made me so frustrated and angry that they base their care of patients from their so called 'knowledge and experience' when they need to realize that every patient is different, every patient has different pain and symptoms. I think it's unprofessional to categorize patients based on same cases which have had successful outcomes, because obviously not everyone is lucky enough to have a successful outcome. Sometimes the symptoms do come back and that's because our situation has come back again, and worse.

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Responses

Response from Sandy Lewis, Senior Consumer Liaison Officer, Clinical Governance, Queensland Health - West Moreton

Dear Unhappy and Frustrated patient

We are really sorry to hear that you have been struggling with constant pain and other distressing symptoms – we can’t imagine how frustrating and exhausting that must be for you.

We agree that a patient knows their body better than anyone else and that in order to provide the best healthcare possible to patients, we must listen carefully to their concerns.

At West Moreton we are committed to ongoing staff training and development in all aspects of care, including the importance of clear and supportive communication with both patients and their families. Your story confirms for us just how important it is to get this right, and to strengthen our efforts to ensure our staff are well skilled in this area. Please be assured we are very committed to this, and to follow through to continually improve.

While we understand from your story you have been referred for a second opinion about your condition, we would also like to make sure that should you need to come to our service again, you will feel comfortable to do so. Please let us know if you are with us again, and we can make sure we better meet your needs, and we can work together to build confidence in our service.

If you would like to speak with someone further about your concerns, our Consumer Liaison Service would be happy to assist and they can be contacted on 3810 1111.

Wishing you all the very best in your journey towards better health.

Kind regards

Linda Hardy

Executive Director, Clinical Services

West Moreton Hospital and Health Service

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