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!

[Star282]

Hi,

So sorry to hear this & I relate so much. I was in a tremendous amount of pain daily, with numbing pains, shooting pains in right side of my body, feeling to vomit, constant headaches, then it felt like I was carrying a cruise ship anchor in my womb everyday & like it had a magnetic pull to the ground. It was awful & I wasn’t listened to by my gp either & I saw at least 4 different Drs. I wasn’t even diagnosed first with endo they told me I had a 2x2cm fibroid & I asked why does it hurt sooo much if it’s non cancerous. Then after some scans & my symptoms, I was told possible endo?!? But I knew in myself I did not feel right esp as I’m very in tune/ sensitive body. My cycle was the worst I could ever imagine constantly crying & in pain.

So, I wrote down all the pain I was feeling, did a 6month journal of pain level,/mood, symptoms, all the food I ate (endo gave me a bad relationship with food due to endo-belly), all my gp & hospital appointments & that I was ignored every time & told to just take paracetamol or go on the pill/have coil fitted. Because I refused to go on the pill due to side effects & family history of said side effects, I was deemed as not willing to help myself & was therefore told that I could not have surgery & that everything is a risk in life, imagine that! I felt so scared, deflated & alone. You cannot understand unless unfortunately you go through it yourself & to the whole world you look fine & that there is nothing wrong. So you think, they think you are making it up. But like the lady previously mentioned inform your boss, it can seem daunting if it’s a male but he needs to understand. This could be a short video explaining your symptoms of when you’re on your cycle/experience pain.

I coped by keeping my stomach warm, tens machine, constant use of castor oil patches & applied this to organic sanitary products too! Vaginal steaming before my cycle really helped. Luckily I have a good supportive man who would rub my stomach & lower back with almond oil. I would also drink raspberry leaf tea, soursop, moringa & ginger tea constantly. Which all soothed my pain at different times during the month.

I researched the nearest hospital to me that has endo specialist’s. I copied the details (name, dept etc) & I emailed the managing Dr of my gp practice & informed him of my pain experience & I have been ignored for almost 6years, I sent all the info I mentioned above! I also asked why I hadn’t been sent to a specialist hospital that was closer to me than the hospital I was being sent to esp I was diagnosed so late with endo and I closed the email by saying I would like to be seen by this specialist & put the details in & that’s the only help I will need from them regarding endo as I am determined to live a pain free life.

Within 3months I had my pre-assessment & deemed fit for surgery. I just had my surgery last week & it was very successful. I’m finally free of this pain no more tears either🎉🎉 It’s truly amazing because I feel brand new! Now I do have some trapped gas & healing to do as I had an extra 3 incision is made but this pain is temporary & nothing even close to the pain I was in before.

Endometriosis made me realise how strong I am physically, mentally & that I have a high pain threshold but ultimately I would not wish for this part of life ever again & I pray it never comes back.

My heart goes out to you esp because you’re so young with your whole life ahead of you. Find a specialist yourself & get referred! Don’t stop fighting for help! We shouldn’t even have to fight but there is light/hope & I am living testament 💫🙏🏾💜