Been advised to see a Chronic Pain Specialist and suggested the Coil...

[Emjay24]

Hi Everyone.

Having trouble at the moment, had a follow up check up today, I had my second Lap 2-3 months ago and since then I’ve had extremely heavy bleeding and large amounts of pain. They did find Endometriosis inside me in the operation and have said it’s up to stage 3 - I told them about a few symptoms today such as bleeding and pain etc. but unfortunately have felt pushed aside and been told that it could be nothing if not just ‘some’ pain (hence why I have been told to see a specialist). They suggested to Coil to soothe the bleeding off and to also help the Endometriosis but I was wondering.... has this actually worked on anyone? Can anyone give me any insight to this?

Thank you xx

[Christin_a]

Hello

Just checking tas you have stage 3 are you being seen by a BSGE specialist? And not just a general gynea? As nhs guidelines say stage 3 and 4 have to be dealt with by the BSGE specialists. As they have more knowledge and skills with dealing with the higher stages.

The mirena coil is a common suggestion for women with endo, I'm currently waiting for an appointment to get mine fitted. As with the contraceptive pill it is to try and ease symptoms, the coil isn't for everyone just like not every oil works for everyone. You can use the search bar to find what other people have said about the coil (don't get a copper one as one of the side effects can be heavier periods FYI)

[Anastasia17 in reply to Christin_a]

Thank you for your reply, very useful to learn that endo stage 3 and above have to be seen by this more specialised centre. It could explain why I haven't been told at what stage my endo is and where it is located at my last Consultant appointment in January, Ive called his secretary asking these 2 questions, but she can't tell me, only the Consultant can, and as he is overbooked... Im left hanging.

[Christin_a in reply to Anastasia17]

Did your discharge note from surgery say how much was found i.e. Minimal, mild, severe? Any mention of rectovaginal? Your discharge note should have all this information and they have to give it to you if you didn't get this you can contact PALs of the hospital your being seen at and ask for copies of your medical records. This will then clear up what stage you are.

[Anastasia17 in reply to Christin_a]

Thank you. The Discharge Form was blank. No advice. Nothing.

[Chillier]

Hi, sorry to hear you are having symptoms since your lap. I was referred to a chronic pain specialist before diagnosis. It's taken four months to see someone. And during that time I've had a lap and been both diagnosed and endo excised. I'm stage 3 too. I'm now on prostap injections.

As far as the pain clinic appointment went I've found my GP far more helpful. The basically said I need to see the nurse specialist for some psychological input and non medical coping strategies and guess what..... Another four month wait!

So get yourself referred anyway who knows how you will feel by the time you get to see someone so you may as well get on the list.

Hope you can get some help x