Really confusing appointment with my gynae!! - Endometriosis UK

Endometriosis UK

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Really confusing appointment with my gynae!!

millieo12
millieo12

Hi everyone! I recently had an appointment with my surgeon about my last surgery (this is my 2nd surgery, was diagnosed with endo last year). It was a really weird experience because in hospital after my surgery, she made a big deal about all of the uterus adhesions she found, how serious and long the surgery was as well as the large number of biopsies she took. However, at my appointment she was quite rude and seemed to dismiss my pain and everything previously she said about my surgery. She said there actually was no endo, and actually my adhesions were on my ovaries? It was also really weird because she only send 3 of my biopsies to pathology to be studied for endo, after all the work she said that she did excising endo. I have photos of my laparoscopy, and she says that I have which ‘red and brown staining’ (without any explanation of what that it’s). She basically said to me that if I ever came back again with pain she would not treat me for endo because it will never grow back and I’m ‘cured’ and instead we would look into the chronic pain model. While I do respect the chronic pain model, I’m a bit confused because endo can grow back.

Has anyone else had a similar experience where doctors change the details of your surgery? I feel really confused and unsupported. It’s just so weird because I had a previous surgery with her before, and it was a much better experience. Hopefully one day I can find a surgeon that works for me.

25 Replies
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Hi, Im really sorry to hear this and I have experienced this before. I remember coming out of one of my post op appointments in tears. I requested all my hospital notes to find out exactly what had happened in my surgery and ive done this now for all my 8 laps. I've found out things that were done in surgery that i wasnt told about, in mu post op appointments. You can then see exactly what was done and if you need further treatment you can always refer to your notes as to what was done before. I hate it when trained medical professionals belittle our pain and suffering, they have no idea what we go through on a daily basis.

millieo12
millieo12 in reply to Muggle003

Thanks so much for your reply. It’s so nice to feel understood and not alone. Your experience sounds so similar to mine; I was crying my eyes out for hours after my appointment. I’m just really worried that she didn’t excise all my endo and I will be in more pain. Your advice is so helpful and I will definitely try to get the surgery notes. Thanks again xxxx

It’s so frustrating - perhaps write to her & let her know how she made you feel & how confused you are?? Don’t worry about doing it either as she shouldn’t be made to feel like that? Sometimes makes you wonder if they are looking at the right person notes? 🤦‍♀️

That’s exactly how I felt! I was like does she actually know who I am ?? I’ve had a bad appointment like this before with her and I spoke to her about it, however she got very defensive. I think it’s best for me to move on to another specialist, because I’m really questioning her professional approach and for care as a surgeon. Thanks so much xxx

"you are cured" never heard that said before, my Endo came back twice and I am sure alot of ladies will agree with me that it can come back. Not very helpful comments perhaps the lady Gynae was unwell herself that day.

What about seeing a different gynaecologist, they shouldn’t make you feel so bad, its not called for. Was it a specialist centre?

Yes, it was. I have an appointment with another specialist soon which is good. Thanks :)

I would ask for a referral to a different gynae - that’s appalling to dismiss your pain like that. I’ve never had biopsies sent for analysis to see if they’re endo either, my specialist has always known herself / himself.

I would write to the clinic or PALS and ask to see another member of the clinical team, or an endo specialist. The pain exploration might be a good idea on the side, as more laparoscopies create more scar tissue which doesn’t help with the inflammation and a good pain specialist can really help x

millieo12
millieo12 in reply to b_bart88

Yeah that sounds good. She is an endo specialist, I’m not sure really why she acted the way she did. I’m going to see another specialist soon. I agree, I would’ve thought that they would know immediately if I had endo. I have a picture of my lap with what looks exactly like endo, and that she says is, ‘red staining’ which is caused by nothing??. I definitely don’t want another surgery for a while now, so I’m definitely interested in seeing someone who can manage my pain xx

b_bart88
b_bart88 in reply to millieo12

Yeah it’s really strange that she acted that way, it doesn’t really make sense at all!

I don’t know what you’ve tried but I find that mefenamic acid helps manage the pain when it’s not a bad flare up, with painkillers on top x

millieo12
millieo12 in reply to b_bart88

Thanks I think I have tried that before, but I might look into it again xx

b_bart88
b_bart88 in reply to millieo12

It worked for me the second time, first time I was impatient and taking it wrong so got a telling off at a follow up appointment 🤦🏻‍♀️ the pain specialist should be able to help lots xx

millieo12
millieo12 in reply to b_bart88

That’s a great idea, thanks again! 🙏🏼

Wow 😘 sorry!

My drs said endo can grow back till you are 50-52 or they told me. Like when you hit menopause it stops growing.

I had a hysterectomy i know its not an option for everyone.

millieo12
millieo12 in reply to Anna1511

Thanks so much xx

Hidden
Hidden in reply to Anna1511

Hysterectomy is the best thing I ever did 2 weeks post op apart from post op pain iv had none of the old pain!!

millieo12
millieo12 in reply to Hidden

Wow, that’s amazing xx

Morning I wasn’t sure if I could “reply to all” because I wanted to. UNLESS you’ve had deep excision surgery, the likelihood is your endo has the potential to always come back. Because it’s never been taken away. Please google Dr Seckin, New York, get onto his website and read like mad. You’ll know all about your endo and though you won’t be able to get to his surgery, you’ll be able to answer back to your so called endometriosis specialist. Sorry for the angry tone. It’s directed at your “surgeon” Not you.

Yes endo can definitely come back, and it’s really rude of her to dismiss the impacts of endo, and the nature of it being a chronic illness, with the chance of recurrence. I’m just not going to see her again! I’ve read Dr Seckin’s book, and I found that my symptoms and pain were all validated. I’ve tried to talk to this endo specialist before and explain my experiences based on my research, however, she seems to get very defensive and doesn’t know any answers. I honestly can’t believe that I trusted her even when she made me feel so horrible, but I was really sick and desperate for help.

Really sorry to hear that. Get another gynae! She sounds like she’s almost verging on medical negligence. We’re all being failed I’m afraid. I’m 50 next year, too long in the tooth to take any s*** Nina. X

Thanks for your support ❤️

Hi I'd ask for a second opinion, I wonder if she got your notes confused with someone else's? That's rubbish that it won't grow back! Keep fighting for your rights, you're not alone! Xxx

millieo12
millieo12 in reply to Emsy

Thanks so much. I’ll definitely get a second opinion. I’m honestly not sure xx

Good luck and don't be fobbed off, this is about your quality of life and with endo it affects everything!

Xx

millieo12
millieo12 in reply to Emsy

So true. Thank you ❤️❤️

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