I’ve been brave!

[endotheline]

I waited sooooo long for a face to face GP appt but have now had one with a really nice dr. I’m lucky to have some private medical care through work and I’m actually seeing an expert on 13th!! I had the worst episode tonight so know it’s the right decision (I write as I’m clutching my hot water bottle firmly).

The consultant I’m seeing is a very experienced endometriosis surgeon and leads an Endometriosis Centre that is accredited by the BSGE. That sounds good right?! I hope I don’t chicken out. If I have a good couple of weeks it’s easy to want to backtrack.

How is everyone else out there?

[Croydebay]

I’m in a similar situation as you, but you’re braver than me as you’ve made the appointment. I also have private medical care through work which I’ve never used. I have my referrals to gynae but havnt yet made the app as too scared as kind of so t want to know. But I know I need to if that makes sense as feel it’s really affecting my bladder now. I was diagnosed 12 years ago. I worry I may have other things going on now maybe fibroids as seen to get a lot of pain on my right side and pelvis and pressure on my bladder. I just can’t face having procedures and investigations done but know I’m going to need too. When I book my app then is it best to look with a endo centre? I havnt seen a gynae for years. Good luck with your appointment and well done for being brave .

[endotheline in reply to Croydebay]

Aw I promise I really am a scaredy cat but thought I’d just go for it this time. Well I have had surgery twice for endo before. Both were with very lovely and competent surgeons I have to say. However I know it’s recommended to use an accredited endo centre. It was more luck than judgement in my case though. I wasn’t happy with 3 consultants AXA Health had offered so I rang back, they offered one more which I just took and it was only after I realised the accreditation so feel I’ve come up trumps with that one now! I’m sure I won’t be brave on 13th! 😃

[1Poppy1234]

I totally agree with you as soon as you have one good day you want to bury your head in the sand and think it will go away. Push for your care. Xx

[endotheline in reply to 1Poppy1234]

Yes I’m terrible for that. If I’m ok for a while I think I’m cured!

[Chronic21]

Best thing you can do to help yourself is write everything down. It's easy to go to the appointment once it's booked in but sometime you get flustered by the questions and forget things. Do a pain diary, note your symptoms, how long it lasts where the symptoms are based is it in one location only or is it all over and specific areas more intense. This can help not only with diagnosis but also treatment plan to manage the symptoms. I'm about to go back into induced menopause as my options were another surgery or a longer run on zoledax with bone scans throughout the treatment.

It is difficult to go through this but well done for booking the appointment and I wish you luck.

[endotheline in reply to Chronic21]

Thank you so much. That’s good advice as actually yes I really do get flustered and panicky. I’d better get a-writing!

[Sunset-lady]

If you have private health care then the time scales are so incredibly fast. You also get proper appointments not rushed conversations in makeshift offices (my conversation about my hysterectomy was in a corridor that had been turned into an office). You can spend time asking questions and your treatment is swift. Go for it! Please don't wait or chicken out. If I'd gone for it when I had private health care I wouldn't be in thus situation now. I waited and normalised pain. Now I can't have surgery as the endometriosis is too severe. They abandoned my hysterectomy. You have an incredible opportunity so please take it while you can xxx

[endotheline in reply to Sunset-lady]

It makes me mad what had happened to our healthcare. I’m also in the receiving end of that for an issue I’m trying to sort for my daughter

I do feel lucky having it so I will progress this.

Feeling so bad for you how come it’s too late? Is there nothing you can do?

[Sunset-lady]

Endometriosis is a nasty disease and once it gets a real hold (stage 4) there aren't a lot of options. They won't touch mine as it will probably mean a stoma bag for life. If I'd done it in my 30s I'd be fine and I had private health care then but they were obsessed with IBS. Be brave and go and do it. I have fibroids, cysts, adenomyosis and endometriosis now. I've spent thousands on going private so use yours now before you regret it. I have total medical anxiety so i absolutely understand your fear but we have to be warriors to get the treatment we need xxx

[endotheline in reply to Sunset-lady]

Oh goodness. You poor thing. I hope you find some magical consultant who can do something

I’m one of these people who hold back as I think ‘well I *look* alright’ but yes I think enough is enough now. This is the third time now I’m pursuing help and I’ve been putting it off since 2020.

[endonewbie2024]

Hey, how did you get referred to private medical? Bupa keep coming back to me and saying they won't cover it because it counts as a chronic pre-existing condition.