My story

[injimomo]

I really wanted someone to know what i went through and still going through without judging me . I was at work yesterday after a month and i realize i have to take it out , so i decided to write it down here rather than sharing it to someone whom i expect them to understand but they don't . I felt it is safe to share here and i am sure there are many other like me who must be experiencing the same .

I have very painful period since the day i had my period. I have taken all the pain relief medications . There were days i cannot stand up, i don't feel like eating , pain on both back and front of my abdomen . I use heat pads and medications . Reached a point where i get blister due to heat pad and i don't feel it popping .Only realize the burns from blisters after period. Some times i get scare , that i am taking lots analgesics every month which is not right for my body. But if i try to bear the pain, i would sweat, pain would go down to my knees and pelvis. I would vomit sometimes. I was advised to take hormonal tablets. Two years back i came to UK. Everything was new to me , the level of pain started more .My buttocks and pelvis starts to pain more even without period days . My coccyx would hurt . I doubted that it can be because of my weight , i stared loosing weight but it was not . My sleep is for 4 hours. After working 12 hours shift , i will be awake at 3 to 5 am almost every night . I sleep on my belly . Hot flush on face.Irregular bleeding and bleeding for 3 weeks after period . I would still go for work . When i let my charge know about it as i was bleeding for long . At work they said it is okay . I was given tablets to stop bleeding and send me home from hospital . Every test was negative. I try every possible things to get better sleep, exercise for mood, organic tea, change in diet, using heat belt both front and back while at work and night sleep patches. I get so many night mares that i cannot sleep as well.

I never realized that , it could impact my mental health too much that it messed up with my mind . I cry all of sudden, feeling lonely , sad, demotivated, too many negativity , anxious. For small task i get very anxious and stressed . I cannot rest unless i finish the task otherwise i get stressed . Hardest part was although i tell people around me , they would just brush it off and some would answer but some would just say it is okay . Same time , i go for shopping , at work and do my normal chores. But it still did not solve anything . The doctors they gave me options of marina , hormonal tablets . I chose not to take it as i felt i am too young for these .

I had laporoscopy with excision of endometriosis recently . I went back to work , people asked me why i was off sick for long time. After hearing what i had undergone. They said , oh you will be okay . It is just a small excision . I don't expect anyone to understand but somewhere it just hurts . Because it is a whole lot of struggle for me . Even it is almost a month after the procedure , when i do manual handling , i could feel the stretch inside from my lower tummy and it burns from within . Some would give me the face as if i am trying to avoid work . I feel the guilty and sad . I try sharing it to my female colleague some would say sorry you had to go through all these ,

I am taking a month holiday next month , hoping all those sadness and anxiety will go away . Otherwise i just feel like , i am a body which is doing its own daily routine but within i am not happy .

Thank you for reading . I hope i have not bored you . Its just i don't know what to do and for how long i have to be like this. Everything stress me out .

[zdl123]

Hi 👋

Thank you for sharing your story.

Just a quick message to say that I'm sorry you have had to go through this. It can be really hard, especially when you feel like those you do share with don't understand what you're going through.

You've done amazingly just to get to this point and now you're here, I would encourage you to share and chat with others as much as you feel comfortable, we're all here to help ☺️

I would also encourage you to reach out to Endometriosis UK via the chat service on their website: endometriosis-uk.org/web-chat

Please feel free to reach out if you'd like to chat.

Take care x

[injimomo in reply to zdl123]

Thank you for taking time to read my story . I felt like m being heard .

[Moon_maiden]

So sorry you are going through this and still in a lot of pain. You aren’t imagining it, unfortunately it’s very real even after an op. Your hormones are likely unbalanced as well. If you haven’t had a blood test for those, worth checking.

It’s worth discussing hormone therapy with the GP or consultant, doesn’t mean you have to but from forums it works for some but not others.

The Endo UK website has some information that you can give to your employer and colleagues. They aim to get employers onboard with how bad Endo can be.