Finally got diagnosed with Endometriosis

[Redandbluespots]

I've been on such a journey with my pelvic pain. I'm 50 and I had a hysterectomy 4 months ago for fibroids. A laparoscopy ruled out Endo last year. I was pain free for the first time in months. I started hrt 6 weeks ago my original pains 6 weeks ago came back with a vengeance just like they did last year when I took it with Prostap.The consultant said it is obvious that I have Endometriosis but they just can't locate it. The plan is for me go on Tibilone and if that doesn't work sequential hrt.
I can't believe I'm here, when 4 months ago I thought the hysterectomy would cure my pain 😢

Hi @Redandbluespots , what a timely post and so sorry you are going through this. I got today results of my MRI and instead of what looked like adenomyosis, I am likely dealing with endometriosis so hysterectomy probably will not help. I have also large polyp and some thickening so booked for hysteroscopy in two weeks. However, like you in pain. Very frustrating and scary as it really changed quality of my life in last few months. By the way, I am also 50, just had my birthday. Not much help from me, very sorry. …just understanding.

I'm sorry to hear you are going through similar. Mine has been really bad for a couple of years. I did have a large fibroid, so they thought originally that was causing everything.
Good luck with the hysteroscopy 🙏 I'm always here if you want someone to talk to x

Thank you very much for your reply @Redandbluespots . Couple of years, …it’s really difficult. Really sorry to hear it and so hope for better times for both of us. I am ok when not at work (this week) and also a bit better now as many of kids’ activities are ending for the summer but can’t imagine managing my mad job and kids (9,13) from September. I have also kidney issues so painkillers are not the best solution. Exercise that would normally distress me has become really painful. Any tips will be greatly appreciated. It would be lovely to stay in touch. X

I really feel for you. It's a scary thing to deal with. It must be hard not being able to take painkillers. I swear by Naproxen. I get a lot of nerve pain down my leg.
The thing I can't recommend enough is a plug in and a chargeable heat pad. That helps with my pain better than anything else. I also found some yoga videos on YouTube for Endo, that also helped X

Thank you @Redandbluespots. That is all very helpful. I am sorry to hear about the nerve pain and the length you have been suffering. Reading more, my symptoms sadly seem to match. It didn’t cross my mind to look for specific exercise so thank you. Currently I am worried, angry, frustrated so trying to find a way forward …step by step. Thank you and have a lovely Sunday. X

I'm exactly the same as you. I can't believe I'm here and for so many reasons feel failed by the NHS :(
You have a lovely day too xx