Going round in circles!

[rainbowtulips2000]

Hello everyone!

I have a feeling this might be a long one, but I really need to share my journey and hopefully connect with others who understand.

I’m 24 years old, and I’ve been suffering from severe period pain for most of my life. Over the years, it has only gotten worse. The pain isn’t just limited to my period, it affects my everyday and makes daily life incredibly difficult. I experience intense pain in my stomach and sides, constant lower back pain, and joint pain that leaves me feeling completely drained. Some days, the pain and fatigue is so severe that I can’t walk, dress myself, or even go to work. More recently, I’ve been dealing with a range of other symptoms, including bowel problems, shortness of breath, nausea, sickness, and episodes where I feel faint. I sometimes experience a tearing sensation in my legs that makes moving even more unbearable. On top of that, I felt a strange popping or bursting sensation on my left side and just under my belly button which really frightened me. The combination of all these symptoms is making it harder and harder to function, and I feel like I’m running out of options. I was supposed to have an appointment with my endometriosis specialist in October to discuss the Dienogest they put me on, but the week before my appointment, it was suddenly cancelled and rescheduled for March. I had really been holding onto that appointment, and used it as a goal to keep pushing towards hoping for some answers and relief, and when it was cancelled, it felt like the rug was pulled from underneath me. I’ve been struggling to function and it’s hard to keep going when I feel like no medical professional is taking my pain seriously.

I’m scared to go to A&E now because every time I have, I’ve been dismissed or told that since I already have a referral to gynaecology, there’s nothing they can do for me in the emergency department. But I'm in so much pain that I can hardly stand. My experience with my GP has been just as frustrating. At my last appointment, he actually sighed and told me to "just take paracetamol," as if I haven’t already tried everything to manage the pain. I left feeling completely unheard, hopeless, and like I’m constantly fighting just to be taken seriously.

I know so many of you have been through similar struggles, and I just don’t know what to do anymore. I'm hoping to discuss getting my first lap when I see the endometriosis team in March. How do you cope with the pain? How do you manage dealing with bosses who don't understand the extent of your pain? Have you found any way to get doctors to listen? I feel like I’m being left to suffer, and it’s exhausting. Any advice or shared experiences would mean so much to me.

Thank you for reading, and I really appreciate any support you can offer xxx

[Solow2802]

Hey there! So sorry to hear all this and genuinely understanding your pain and frustration. Im older than you however I can absolutely relate to the pain. I think having a laparoscopy is a great way forward. The gynae team I’m sure will provide much more support than your GP! If it’s any consolation my GP said it was IBS and prescribed me buscopan - recent lap has revealed stage 4 endo and everything is stuck together! Oh the joys! Keep going lovely, I know it’s hard but you’re not alone! I’ve had to tell my manager everything, he has no knowledge of endo so I’ve told him tmi! I think he now knows my anatomy more than I know it myself! Haha.

Regarding the pain, other than meds have you tried tens machines/myoovie? I’m thinking of giving that a try..I’m the same as you, pain everyday. It’s hard but you will get through it!