I just need to know I am not alone

[Jasminegrace]

I had an ectopic pregnancy 2 years ago, causing my tube to rupture and internal bleeding. I was told after my operation I have endometriosis. Since then I have had all the usual symptoms & its honestly dehumanizing. I have lost a job due to time off. The list of ways its affected me is never ending.

What was drawn me to this site for the first time is my period was around 1 week ago. The pain hasnt stopped it's just gotten worse. Yesterday I couldn't even put weight on my foot. Huge scabbing pain in my right side. I thought it was constipation at the start but I went to see my GP because it was unbearable & I have had a scan today and its a ruptured cyst. Has anyone else had this? The pain is the worse thing ive ever experienced. I have oramorph (2.5 ml twice a day) and it's not even taking the edge off. There is nothing they can do. I just need to wait for my body to absorb it.

I am just feeling really isolated, upset and in pain. I really cannot continue experiencing this all the time. Its lonely. Ii never make plans because I don't know what my symptoms will be like & i think this has just tipped me over the edge.

Please shower me with success stories on coping with this illness.

[Pureunicorn]

Hi so sorry to hear what u are going through, ur story is very similar to mine, I had a miscarriage around 4yrs ago and that's when all the symptoms started, my cysts also ruptured and its definitely the worst pain. I just wanted to message you and let u know ur not alone. I'm now under an endo specialist and waiting for them to have an MDT meeting to let me know what treatments they can do, it's a long tough road but hopefully there can and will be some light at the end, just keep fighting and know ur never alone xx

[Moon_maiden]

I can relate to some of your pain, what you’ve been through has been tough. Have you not been referred for treatment, especially for the endometriosis?

[Ivy170]

You're definitely not alone. I had pelvic pain for about 20 years and was diagnosed when I had an ectopic. I was so used to pelvic pain I didnt do anything about the pain for quite a while and tried to get on with my day (I didnt know I was pregnant). Even since the diagnosis I've struggled to get support in any way from the NHS and have had a pretty bad day today trying to get medics to take my pain seriously. It's really hard. And I agree it was feel very lonely. And so difficult to actually have a life. Pain is exhausting. I'm currently trying accupunture. I doubt any one thing will help everything and there are so many related issues with endo that it does just feel like constant appointments where nothing gets resolved. But you're not alone. There is lots of great support out there. Do you have a local endo support group. Maybe that would be helpful? I currently dont have one near me but used to. I found it really helpful to have monthly opportunities to express the frustrations and not feel alone.