"I feel so let down"

In the past 3 years I've been working closely with the Royal Infirmary, Edinburgh to try and diagnose my endometriosis. 

At first it was claimed that my bowel symptoms and my families fertility problems have nothing to do with endo (turns out my bowel was adhered to my colon but okay) - they also cauterised my cervix with silver nitrate without fully informing me of what was involved. I was told it was a silver paste, applied like lipgloss, to my cervix to stop bleeding after sex. 

I was then with another consultant for the remaining two and a half years, who was incredible, understanding and at the beginning seemed well informed. For example, suggesting not to get an MRI as endometriosis can't always be spotted and it's not 100% accurate. Then this year we decided to do an MRI and I was told by the same person that as it wasn't seen through imaging, I most likely didn't have endometriosis. I'm aware that there are currently trials where they're trying to do less diagnostic surgeries and focus on imaging instead.

For those two and a half years I was led to believe that my consultant would be my surgeon. I was hopeful as they were based at our main BSGE hospital and on that and the EXPPECT team. I was seen at this hospital for my pre op assessment appointment and the nurse that looked after me told me that this doctor was one of the very best. 

Roll on to my surgery and I'm going to another hospital instead, still feeling hopeful of the same surgeon as I thought that these doctors split between both hospitals. 

I had a different consultant come to me before my surgery to go through everything. They explicitly referred to "the surgeon" in the 3rd person several times.  It wasn't until I woke up to the same face after my surgery that I realised this person was in fact my surgeon. 

During the initial conversation I had explained that if the surgeon wasn't going to use the excision method then I'd rather they left any endometriosis they found as I strictly won't consent to ablation. I was met with slight pushback but stood my ground. 

When I woke up, I asked him if I could record our conversation so I don't forget anything.  I was told there was no need as I'd receive a letter outlining everything, so I didn't record.  I'd like to note that I had surgery in May and received my letter towards the end of August/beginning of September. 

I took notes following the conversation and the organs I was told had been fused together actually weren't. I only know this because at the end of June I was tired of waiting so I sent a Subject Access Request submission to the NHS and received all of the documents. 

Nowhere in the notes has it said there's been anything sent off to pathology/histology. The only way to accurately diagnose endometriosis (especially as I ended up not having the surgeon I expected) 

I've tried to contact my main consultant and have been unsuccessful several times.  This is a shame as they were the first doctor to relieve my stress as I have a lot of medical trauma from the last decade trying to get this condition diagnosed. 

I have no idea why I had the change of surgeon and healthcare so last minute but it is my concern that as they saw nothing on the MRI, it wasn't worth their time anymore. 

My bowel was adhered to my abdominal wall, I have an adhesion on my right ureter. 

At the time of posting, I'm five months post op and still haven't been given a follow up appointment, or any contact at all. I haven't chased it up because I feel so let down and upset and it's not worth sacrificing my peace, even if it were to give me any more answers. 

As they claimed there wasn't much endometriosis visible - but a) they didn't take me off birth control before the surgery. b) I had NO contrast dye or buscopan during the MRI. c) the surgical images seem to have more evidence of endometriosis than they let on. 

My letter from the surgeon had the wrong dates too, so it's no surprise that I haven't had a follow up, but I'm too emotionally and mentally tired to even correct this at this point.  I will likely need another surgery as nothing was removed, just adhesiolysis and a yearly ultrasound to keep an eye on my ureter. But at this point, I probably won't choose any of these surgeons again. I'll have to go private or abroad. 

I have felt gaslit, doubted, manipulated and violated over these past three years.  My voice shakes when I even try to make a GP appointment - these experiences have set me back years in my growth and recovery from my distrust and fear in healthcare professionals.  I'm glad I somewhat got diagnosed but if this is what it cost me then I'm not even sure I want it.