"Have you heard of Endometriosis?" ....Seriously?!

So, an update following on from my previous blog post - "My first lap - or not" I had a consultation with the same surgeon regarding the operation to have this giant cyst removed. He was giving me my blood test results and said (I quote) "It showed up that you either have a swelling in the Pelvis possibly caused by Chlamydia, Ovarian Cancer Or Endometriosis........Have you heard of Endometriosis?"....

ARE YOU ACTUALLY KIDDING ME?!?!?

I have been seeing this surgeon for 2 years leading up to this Laparoscopy to diagnose diaphragmatic endometriosis. I have had 1 appointment, and 3 consultations before this. He was also operating on me this time last week, to look for and treat diaphragmatic endometriosis!!! I mean, Is he serious!! the Laparoscopy could not go ahead because I have a huge cyst in the way that needs removal first, and this was not discovered because this surgeon did not examine my stomach at the last consultation!!! Which he admitted and apologised for!!

I know they see a lot of people but REALLY?! Have I heard of Endometriosis?!?!? I am absolutely Flabbergasted!! He fobbed off the likeliness of endometriosis yet again, despite already doubting me and making a mistake previously, and the fact that I tick every possible box for having endometriosis!!

Shocking!! So Frustrating!! It couldn't be clearer that the Cyst is endometrial!!

Will update again once the next op has been completed!!

Wish me luck, I feel I am going to need it!!

5 Replies

oldestnewest
  • Dear Scoones

    Have you thought about mentioning your experience with someone in the NHS - it sounds like your experience could help others - this surgeon needs to improve by the sounds of it!

    Perhaps contact the PALs service in that organisation? Perhaps the Endo society could give you some support in raising the issues? Is there a GP you trust at your family practice you could mention this to?

    There may be some other services you can tap into at your GP practice to help you relax for the op - some of the most innovative may give acupuncture, hypnotherapy, talking therapies, massage. It may just be a question of asking.

    Hope it goes well,

    Kind regards

    Anna

  • I am so sorry to hear of your experience. Personally I would ask for a referal to an Endo specialist consultant. Is your guy a general gynae? Even if he says he is an endo specialist, I would ask for a referral to a different one.

    It does cause trauma to go through this but it so worth it to see someone good.

  • I usually try and defend the medical profession when it comes to endometriosis but this has left me completely and utterly flabbergasted. Is this the same guy who wanted to wait until your mum got there to explain what had happened (or hadn't happened) and then bent over backwards to apologise?

    If it wasn't so damned serious it would almost be farcical. And if you didn't need to get this sorted quickly, I would be inclined to ask that another surgeon takes over your care from now on

    But even if you don't, you DO need to make the hospital aware of what is going on. Write a letter - not a letter of complaint necessarily, although if they DO find endo that would be another story, just a calm, reasoned letter explaining exactly what has happened to you this far and how you feel you ought to bring this to their attention. Because I bet they have no clue....

    Good luck love, and do let us know what happens next!

  • Hello!

    Thank you for your comment. Yes, my mum and I are planning on writing a letter once this cyst is out. Yeah, its the same surgeon that I have had through out this entire process. He is just so adamant that there is no way I have it, its quite infuriating!! But yes, It will definitely be brought to the hospitals attention!!

    I will keep you all posted on the next chapter!!

    :)

  • If it helps you to feel less 'alone' - a friend of mine is in the process of trying to be diagnosed, not necessarily with endo but to find out what's causing all of her pain. She is in her mid forties, happily married with two grown up children. Her consultant - are you ready for this? - her consultant though it was more likely that she had an STD than anything else and when THAT came back clear (obviously), the woman wanted to do a pregnancy test....

    There are some bloody brilliant consultants out there, and I am lucky in having one of them. But at the other end of the scale....!!!! xxxx

You may also like...