In desperate need of some help regarding laparoscopy surgeon.

[Ejrn]

This is a very long post so if you don’t read all of it I won’t be offended, maybe read first and last paragraphs for the short(ish) version.

My diagnostic laparoscopy is this Thursday and as I outlined in my previous post I have been incredibly nervous about the outcome. I am completely willing to accept that there is nothing visibly wrong with me if I feel that it has been observed by the right person - someone who I can trust to have looked properly - so I can walk away from this surgery without questioning for the rest of my life whether they maybe missed something. I was already concerned that my surgeon was not a endo specialist when I looked her up, and just general gynae. However today I was repeating the surgeons name in my head and something clicked. After rummaging through my hospital letters I confirmed that the surgeon was who I thought she was - the same woman who had given me one of my most upsetting and undermining consultations I have ever had 9 months ago.

When I saw this woman previously I was going through one of the worst periods of pain I had ever experienced and was at an absolute loss. During my consultation she told me there was no way I had endo because it hadn’t shown on ultrasounds, that the migraines I was talking about were simply headaches and I should know the difference, and then proceeded to say that my pain is due to being an ‘architecture student’ which is incredibly stressful (I am doing just fine despite my dehabilitating pain just to let you all know). Once she already had me in tears from pure frustration she then started digging up about my childhood suggesting that I had been abused or molested and that my pain was caused by PTSD (I had a mildly stressful upbringing with definitely no abuse). I left this consultation convinced that everything I had felt for the past 7 years was entirely in my head and rung my mum to say I’d been advised to go to stress management classes to which she set me straight again. This is a very physical pain, it is cyclical, I’ve had visible symptoms that something was not right. The gynaecologist assured me she’d see me in 6 weeks time to decide whether to go ahead with a laparoscopy - which she was convinced would find nothing - or to look at alternative treatment for my pain so I left there with nothing at all other than some more painkillers.

The worst few months of pain passed with 0 support, endless A&E visits and endless doctors appointments begging for my referral to be chased up and I heard nothing. When I finally read what the woman had written up following my appointment it said I was an ‘architecture student highly unlikely to have endometriosis’ and who had been put in for a surgery before but had it cancelled because my ‘pain didn’t warrant this’ (the surgeons were concerned I was too young and didn’t want to make scar tissue whilst my mum was desperate for me not to have it done). Since this letter not a single doctor has taken me seriously, and every appointment I walk into goes the same way where they say ‘you must be really stressed’ and ‘this must be making you feel very depressed’ and ‘how is this starting to affect your relationships’ before going down the same route of asking about my childhood, have I been molested (NO) and suggest putting me on amitriptyline. I have never felt so stuck or unheard or made to feel like a mental patient the way I have over the past few months. I break down and cry every time I see a doctor because I already know whats coming and this just adds to my reputation as a nut case. My record is probably absolutely appalling at this point and I have been painted as if I am utterly crazy.

6 months later I reached breaking point with my pain and rung about 10 different numbers until I finally got through to a gynae receptionist who confirmed I had never been put back on the referral list by the woman I saw. Hearing how distraught I was she put me in for an appointment in 5 days time with a different consultant who had me put through my pre-op on the same day. I have been preparing myself for my surgery ever since, doing everything to reassure myself, writing out lists of things to bring up in my consultation, making my mum book time of work to come and collect me from London afterwards, applying for time away from uni, changing dates of upcoming hand ins etc, all to find out that it will be this woman who is operating on me and I am devastated. My question now is - what the hell do I do. If I go through the surgery with this woman who I absolutely resent at this point and they find nothing, I will never fully believe the outcome as I have been so severely undermined and let down by her in the past. If I cancel it now or try to switch surgeons, no doubt I will have a great big red flag against my name and all the surgeons will talk amongst themselves or write in code in my notes to notify each other and I’ll probably feel like they all think I’m lying about my pain too. My best friends parents are surgeons and I know the talk that goes on in the background and I just feel utterly trapped.

I’m sorry for this ridiculously long post, my surgery is in 4 days and I am at a loss. Feel like calling up with a cold and cancelling the whole thing and never speaking to a doctor again in my life. If you got this far through this thank you so much and if anyone has any suggestions on how to get past this one I would be so grateful. I'm really unsure of who to contact and how to word things gently so it doesn't get taken the wrong way. I am pretty devastated and am beginning to lose trust in the system entirely.

[Christin_a]

Don't let this Dr anywhere near you!

I'd suggest calling PALs of the hospital you are at and making a formal complaint about this Dr due to how she treated you. It's appalling and clearly she has no clue about endo saying it couldn't be endo as not seen on ultrasounds. As that is bs endo usually doesn't show on ultrasounds which is why surgery is needed to get a diagnosis.

In the UK anyone diagnosed or suspected of having endo MUST only be seen by a gynaecologist with a specialist interest in endo. This is a requirement in the guidelines for the treatment and diagnosing of endometriosis.

[Christin_a in reply to Christin_a]

Not all Dr's are like this. This one is just a b*tch. Please don't let this stop you from pushing for a diagnosis with a Dr who actually has a clue about endo.

[Ejrn in reply to Christin_a]

Thank you so much for reading and responding - this is exactly what I thought, there is no mention anywhere of the word endometriosis when I’ve researched her! I’m going to ring tomorrow to ensure that it’s definitely her operating on that day and then see if there’s any flexibility in changing it. It’s just awful I’m at the stage where I’m too scared to even complain because they’ve made me feel like the whole NHS is against me and if i do say anything I’m worried there will be some sort of flag against my name. My doctor experiences for the past 9 months have all been shaped by this one woman and I don’t think I can face her let alone trust her to operate on me and diagnose me.

[Christin_a in reply to Ejrn]

If they tell you that it is down to do the surgery. Tell them that it goes against the NHS NICE guidelines for the diagnosing and treatment of endometriosis. As she has no specialist interest so should not be seeing you let alone doing surgery.

I'm so sorry that it's been so awful, for you. Patient Advice and Liaison Service are based at the hospital but are there to help people like you who are being frankly mistreated. You deal with them and tell them what's wrong and they then look into it and can help ensure that you are seen by the specialists you are meant to. Write everything down to them and be clear about what you want to happen to correct it. Such as her not doing your surgery and request someone else does it (maybe research the other gynaecologist at the hospital and see who does know about endo and name them).

Her views and opinions on endo are completely outdated and barbaric. And unfortunately GPs have to rely on specialist opinions on things as they can't know everything. So her misinformation just spread to your GPs too. I also recommend if struggling with your GPs ask at the reception of there are any that have extra training in gynaecology, not all have them but I have one at mine and she was the one who finally listened (I'd been going for year about my periods and no one had ever mentioned seeing her)

[Lily1986]

Good luck with your surgery.

And don’t doubt the symptoms you experience.

I was made to feel I was wasting doctors time for 13 years and when someone finally did listen it was stage 4 and I was infertile and has been an ongoing nightmare but at least I know why and that I was not imagining it at all.

It doesn’t show on any scans so I don’t know why they use them as they useless at helping any one get a diagnosis and help for their pain early!

Good luck I hope it goes well and you get answers xxx

[Moon_maiden]

So sorry you’re going through this, I know how you feel, it’s just as much frustrating as upsetting. Find out who is operating without a doubt, if it’s her, speak to PALS first as someone suggested. It’s no good having someone you’ve already had a bad experience with. I don’t know why doctors do this. My hormones keep playing havoc and the medical profession should understand this and not reach for anything else first.

Good luck, I’m sure you’ll make it work, you haven’t given up so far. 🙂

[Ejrn]

Just as an update, I have called the hospital this morning and 2/3 people I have spoken to have said it will be a different male surgeon operating on this day. There is still a lack of certainty but I am going to go ahead with it, and if the woman turns up I will be walking out and contacting PALs immediately after to explain why I’ve had to do so. It is a complete conflict of interest to have someone operate on me who didn’t believe there was anything wrong in the first place. I am still a bit shaken by the whole thing and was considering leaving it all together but have talked myself back into it for now. Fingers crossed it’s not her who turns up on Thursday!