Like many, I've had a looooooong journey- 4.5 years of crippling fatigue, bloating, abdominal pain and back pain, which has completely derailed my life, as well as 'IBS' from the age of 12 (I'm now 40). I had a lap 2.5 years ago by a general gynae which I was told was clear of endo but just had 2 fibroids and have been landed the labels of IBS and vague psychological causes. I then gave up on getting help medically and have sought a lot of alternative treatments, which have played their part. My full story is in my bio but in short, I had an MRI in May through orthopaedics and was told I had severe endo. The diagnosis was vague and even when I met with the gynae (the same one who did my surgery 2.5 years earlier), it all felt vague and as though I wasn't being given the full story. The treatment they offered me also didn't seem adequate.
I wasn't happy with this so I requested my medical notes and found out that they really hadn't been telling me anything- they couldn't decide what was going on inside me with the endo specialist team saying it didn't look to be a typical endo presentation and they were querying cancer and the cancer team saying it looked like endo. In the endo, I got left with the cancer team but offered zoladex for endo. They also had made an assumption that I didn't want surgery because fertility was a priority which is not the case and had never been discussed with me. I don't have children and I'm unsure if I want any but I would definitely forgo my chance at a family if it meant a return to good health and I could start living my life again.
So, I did some research, got some amazing help from another site and wrote a letter of complaint to the endo service. I got a thorough letter from on the the centre's endo specialist apologising and explaining that my case was very complex and he offered to meet with me to discuss my case and the treatment options available. I met with him last night, the consultation was almost an hour long and he explained everything to me, using my mri scans etc to do so. He took a full history of my symptoms starting from the beginning. Showed me genuine empathy and spoke to me like I was an adult. He explained that neither he or the endo team radiographer who is the lead in her field has ever seen anything like my case and they're really not sure with what's going on. But, we've decided on a plan of action, which is to do a exploratory lap and I've agreed to some treatment if needed but if it's looking like a 'pelvic clearout' (what a term!) is needed, they'd do that in another surgery so it could be agreed with me first. I felt it would just be too scary to go into surgery knowing that the outcome could be anything from a cyst removal with a tiny scar to a full removal of all my reproductive organs with a full abdominal scar. He is a getting another, even more experienced surgeon to join him in the surgery, so I really do feel I'm getting the best treatment I could. He's suggested that using zoladex for the next 2-3 months in the run up to surgery might help, as things could shrink and it could mean it's easier to remove and they're will be less vascular risks (I have fibroids too), so I'm going to start that ASAP. Yay hot flushes for Christmas! 😂
I think given the situation, I'm as pleased as I could be.
I'm of course angry that it's taken this long and I've had to go through SO much to get this and I've not even had any treatment yet but I do feel that, at last, I have been listened to, seen and someone is taking responsibility for me- he even said that to me.
It really ridiculous that I feel a grateful and surprised to be treated this way but that's due to my experience over the past 4 years.
This outcome has only happened because I trusted my instincts, requested my medical notes and realised something wasn't adding up. I got some help to write a letter of complaint, which I really needed- partly due to my extreme fatigue but also as I find it difficult to be this assertive and 'demanding' (it's not demanding to ask for proper medical help but it feels like that for me). I really can't explain just how bad things were getting for me. It really has felt at times that there was no point to my life but I'm hoping there is going to be something that can be done to help.
I just want to encourage anyone who is in that awful position of being fobbed off and made to feel that they are being a hysterical drama queen, that it really is worth complaining but to do your research first- get your notes (it's easy) and try to find out as much as you can about national guidelines etc so you have something behind your complaint. To anyone who is feeling that they're being fobbed off or not listened to, just don't give up, keep fighting. You are not a hypochondriac. You're not a drama queen. And you deserve to be listened to and treated with respect.
I am happy to share any info or pass on my letter to anyone who thinks it could be helpful- just contact me.