Gynae phone appointment

[Cats87]

Hi Everyone,

I have been waiting for a second opinion gynae appointment for 6 months after being diagnosed with deep endo through an MRI. The previous gynaecologist didn’t seem to take it too seriously and just told me to get the coil and discharged me back to my gp.

Since then I’ve been in more and more pain, and this got even worse since getting the coil fitted. I don’t think it’s just cycle related anymore, I’m just in pain pretty much every day. I’ve was signed of work throughout November and December and although I was able to go back for a couple full weeks in January, I can barely makes it through a week again now and have needed to take more time off due to barely being able to get out of bed.

Every doctor tells me it just takes time for the coil to settle, so I’m hanging on to see if eventually it gets better.

I’ve now been offered a phone appointment with a gynaecologist next week - apparently this is what I have to have first and then they will decide what to do next. Any advice on how to go about this appointment to get them to take my symptoms seriously and either give me pain medication that actually works or do a laparoscopy would be much appreciated. I just feel at the moment they expect the coil to solve everything - which it certainly hasn’t.

Thanks so much!

[thebird1]

Hello,

Is the gyne an endo specialist? You can Google BSGE centres and see if the hospital is listed and which consultant is listed. If they already know it's deep infiltrating and the coil isn't working you should push for surgery. Look at the Nice guidelines for deep infiltrating endo......it gives guidance as to what should be best practice and what they should be considering treatment wise. Look at that before your phone call. How old are you as that can change treatment plans.

I have the Mirena coil and it has stopped any bleeding and therefore helped with cyclical pain. However, endo tissue outside of the uterus continues to grow. I had my first lap in 2016 and I'm awaiting surgery again.

Before my first lap they offered the coil, pill etc but we were trying for a baby so I pushed for surgery.

Good luck........advocate for yourself and don't be fobbed off!

[Lanchuan]

I think from reading other's posts, if you know you want surgery you have to straight up ask them for it, and not take no for an answer. When I first brought up Endo to my GP he laughed in my face. I waited 6months for a Gynea appointment and it was just a phonecall and they said it's normal to be in pain you're fine, you can try the coil if you want. I was so frustrated I paid to see a private doc but I was scared to do the laparoscopy so opted for coil. The first few weeks were horrendous and I ended up going to a&e because I thought something was terribly wrong and the pain was worse and lasting longer. I was given pain meds and told to wait for the coil to settle. I was on cocodamol, Mefenamic Acid and Buscopan (why?!) and I was still in so much pain. I'm about 2 months in to having the coil and think the pain might be starting settling down (please 🙏) but theres no pattern to when it comes and goes now. Still some issues but manageable enough to work (though mainly from home). I was told to wait 3-6 months with the coil and if it doesn't help I should go back. They might give you a similar line so I hope this at least helps you prepare for what you might want to say back! If you've already been diagnosed and are in constant pain they need to help you! Good luck with your appointment and really hope you get the help you need 🙏

[white61]

my MRI showed endo but when I had surgery he couldn’t see endo anywhere and he was a specialist but the only way to have a certain answer is surgery and whilst they do surgery they can get rid of the endo they see, not sure why that consultant discharged you there should be a plan for surgery if that’s what you want

[white61]

currently I’m on the Prostap injection which is chemical menopause to try and help with pain which it has so far but the side effects aren’t great. Previously I was on the pill and the coil because I keep getting ovarian cysts so they suggested that to try and stop me having the cysts, it made no difference. The coil was great to reduce the bleeding but I was still in agony. The coil does take time to settle into your body but I don’t think it will stop the pain completely. Unfortunately you just have to keep nagging until they listen, make it a big deal and on this phone call say that your in agony etc and would like surgery etc. it’s so tough but if we don’t speak up you will be forgotten about