Feeling drained after my latest gynae appointment..

[Haneliz22]

Hello all,

First I’ll introduce myself. My name is Hannah, I’ve just turned 24 and I’ve been suffering with endometriosis symptoms now for 7 years. I say symptoms as I haven’t had a laparoscopy or diagnoses as yet. I’ve always tried to get on with my symptoms quietly to not be ‘overly-dramatic’ but funnily enough during endometriosis awareness month, I had my latest appointment with my consultant who felt the need to discharge me from their services. Leaving me in a state of shock, anxiety and confusion.

About 12 months ago my original consultant after doing all the usual tests (scans, bloods, hysterosalpinogram) referred me to another consultant for a second opinion as the tests showed nothing, I only presented with excruciating pain in my womb and bowel, quite horrific periods and lack of fertility. I then saw a junior doctor working under the new consultant who prescribed Zoladex. After 5 injections over 4 months with countless mood swings and hot flushes, I had my last injection at the beginning of February (5 weeks ago). The injections completely stopped my periods and thankfully stopped the pain.

Which brings me to yesterday, my appointment with my latest consultant who I’d never had the ‘pleasure’ of meeting as yet. I thought something was amiss when they didn’t do the usual weight and height checks prior to being seen. I sat down at his desk for him to say he’d been reading through my notes, he didn’t think I had endometriosis and that he was unsure why I was referred for a second opinion. I then explained my symptoms, how I found the Zoladex injections and asked a. If he didnt believe I had endometriosis why would I be prescribed Zoladex and b. If I didn’t have endometriosis, why would the injections have stopped the pain? To which he replied ‘If Zoladex has stopped the pain then it’s cured you and so we don’t need to see you again’........ WHAT THE F**K!!!!!!!!!

So now I’m sat crying in my appointment and it doesn’t take a medical qualification to understand that sooner or later the Zoladex will wear out of my system and my delightful periods will return, as will my pain. I just don’t understand why I’ve been discharged and am really struggling to understand and come to terms with this.

So the appointment didn’t end there, I asked about the eventuality that the pain does return and he said you would go to your GP to refer you back to us... and what?! Wait another 6 months to be seen. He did tell me that he could carry out a laparoscopy but a. He would be criticised as my BMI is 40, b. He might not find endometriosis as it could be that it isn’t visible and c. If the endometriosis was stuck to my bowel or bladder he wouldn’t touch it as there would be a chance of perforation. He said it’d be more useful for me so have a hysterectomy, or if I want children to get pregnant as that is a ‘cure’ for endometriosis. I’ll not even touch on my fertility problems here.

I’m beyond words following my appointment, I feel mad and upset and so suppose I’m posting to see if anyone has experienced anything similar and how you dealt with it? I felt after being prescribed Zoladex I was finally getting somewhere. Any advice will be most welcome.

Thanks in advance.

Hannah x

[lisaevans2912]

Well he sounds like an absolute wanker, sorry your having to deal with all that!!! I would go back go gp and asked to be referred to someone different, you are allowed to change consultants, iv done it twice. fingers crossed for you xx

[Haneliz22 in reply to lisaevans2912]

Thank you so much for your reply!! X

[Catness]

Hi Hannah,

I read this on my phone and had to log on to reply on computer because I am stunned by what i've read. First of all Lisa is right.. he sounds like an absolute rubbly stunt to put it mildly.

Okay here is what I would suggest - you need to go back to your GP and demand to be sent to a BSGE approved endometriosis centre. Look on this link to see where your nearest one is: bsge.org.uk/centre/

How you have been treated here is outrageous. And as for blood tests and scans etc. I went through my GP and was referred for scans and blood tests and ultrasounds and they all came back negative and he basically told me I was a crazy person and that this was all in my head. Low and behold I went privately, more on that in a minute, and had a laparoscopy where I was diagnosed with stage 4 endometriosis, adenomyosis and interstitial cystitis.

My advice, and I realise that this isn't an option for everyone, is to pay to see a consultant privately - around £180 for an initial consultation which I know is a lot - who also works in the NHS. You can find them by seeing which private hospitals are in your local area (such as BMI healthcare or Spire healthcare). On their website you will see a list of their consultants within their gynae department and on individual profiles you will see if they have an endo specialism.

Waiting time, in my experience, of seeing a consultant privately is 2 weeks or less though I realise this will depend on your area. Hopefully what will happen is this consultant will re-refer you back into the NHS and will perform a laparoscopy. The absolute worst case will be that they can't do that but they will have the expertise to realise your symptoms and will be able to refer you on to a colleague in the NHS who can work with you and send a letter to your GP basically telling them what to do.

I have been forced to use this method three times and each time it has worked in my favour, though I have also had to pay for two laps privately as well.

From the bottom of my heart I am so sorry for how you have been treated, it's awful and no wonder you are feeling disappointed. The hardest lesson I have had to learn on my endo journey is one of being my own advocate and admittedly I am now quite pushy with the GPs and consultants until I get what I want.

I would also advise when you see either the NHS consultant at the BSGE centre or a private consultant you make a very clear list that goes back as far as you can remember with every single symptom that you can remember even if you think it isn't relevant. Try to put down everything so that in that 25 minute or so consultation that get the most clear snapshot of you and what'g going on as possible.

What you are experiencing isn't on and you need help in finding out what's going on... you just may have to push for it.

Biggest hugs for you, I hope some of what I have said is helpful! xxx

[Haneliz22 in reply to Catness]

Thank you so much for your reply!! Looking in to the BSGE centres as I type... it is most helpful thank you! X