Does this sound like endo?

[Shellbell2023]

I have had chronic pelvic/ lower back pain for the past 12 years, it flares up to the point where I can't do anything, but lay in bed and then after a few days to weeks it calms down to just the "usual pain/ache" and the cycle continues. I have been to see so many doctors and trips to A&E over the years, they have scanned my bowel, my stomach, gallbladder, uterus, ovaries, and all came back normal, but the pain persists, I've been told it's IBS, a stomach ulcer, stress, or that I have a low pain threshold and I have got to the point where I feel like I'm going mad.I have a bicornuate uterus, and have always had incredibly painful periods, but when I have mentioned this to my doctors, they have said it's normal and to take paracetamol... Basically like trying to put out a fire with a thimble 🙈. So on to the last few weeks, I had a period that lasted 5 weeks, I was prescribed progesterone to stop the period and although the bleeding stopped, the pain has not, and if anything it has gotten worse!? I ended up in urgent care yesterday and they have now suggested it is likely endo, so my question is, does this sound like endo? And if it does, what can I do to help? I don't want to just be pumped full of painkillers, I'm trying to do a PhD and can't concentrate with either the pain or the drowsiness from the pain meds. Has anyone got any advice? I have a tens machine, tried a warm bath, hot water bottle, baggy clothes etc ( all without knowing this was possibly endo) but has anyone found anything else that helps? I just want to get this flare up to calm down and get back to some semblance of normality.

[endo_the_stigma]

This sounds like textbook endo to me babe. In terms of managing your symptoms it sounds like you're doing a lot of the things I would usually suggest (I have endo and adenomyosis) but in terms of getting a diagnosis etc I would make an appointment with your GP, take a diary or notebook of all your symptoms, tell them you think it is endo and that you want them to refer you to a gynaecologist at an endometriosis specialist centre asap. You can go private which will be much quicker but obviously costs money so it depends on your situation. When you do see a gynae or endo specialist, INSIST that they send you for a pelvic MRI and put you on the waiting list for a diagnostic laparoscopy because reading your story/symptoms I would be very surprised if this isn't endo but even if it isn't, something isn't right and you deserve to have this looked into and not be fobbed off with IBS, low pain threshold etc! I'm so sorry you're dealing with this, I know how horrible it is and if you ever need to chat with someone who gets it, my messages are always always open💛 Good luck and don't stop fighting for answers xxx

[Shellbell2023 in reply to endo_the_stigma]

Thank you so much! I really appreciate you getting back to me! This is the first time in almost a decade that I haven't felt like it's just me "making it up", I know you mentioned going private, not sure if you know, but if you have a private consultation, can you then be referred to the NHS for treatment or tests? Or once you go private do you have to stay private?

[endo_the_stigma in reply to Shellbell2023]

No problem at all - it can make you go completely crazy when you are constantly being told that its all in your head or 'painful periods are normal' (they are not) but trust me, your pain is real and valid and you deserve to be treated like it! So I had two consultations privately and an MRI privately which is when they diagnosed me as they could see endo and adeno on my scan report but I can't afford to go privately for my excision surgery so my private specialist referred me straight to the NHS for a laparoscopy with excision (him or one of his specialist surgeons will be doing it in an endo centre) so I won't have to pay the £7.3K but the wait almost a year🥺 So yes, you can do both and you shouldn't accept anything less than top care like that - If you want the details of my private specialist (who also does NHS work) just drop me a message (we aren't allowed to give recommendations on public posts) xx