Endo pain

[writingllama19078]

Hi, I'm new to all of this. I've been suffering with period pains since I started my periods at 13/14 and I'm 21 at the minute. Because of the lockdown I can't have the laparoscopy to see what's going on inside so I've been started on the injection (first jab is next week) to try and help stop my periods and the pain. But I'm stuck because mid cycle I end up getting bad period pains and I have no idea why or what to do to sort it. I'm scared of what I've got and I don't know who to talk to about it as I've not got anyone who knows me that has it

[Yellow-daffodil]

Hi, I know how you feel I get bad pain from endo too. If you get really bad pain and a regular dose of painkillers doesn't work you can talk to your GP about getting a stronger dose. I find heat works best, so like a heating pad or hot water bottle. Apparently some diets can help like cutting down on red meat, caffeine, sugar and alcohol and eating more fruit and veg. I heard gluten free duets can help too.

[writingllama19078 in reply to Yellow-daffodil]

They mostly do the trick, I'm on strong painkillers already for it but it's hard because they always make me really dozey and if I'm concentrating on uni I can't take them. I'm red meat and lactose intolerant so I don't eat any of that lol. It's just hard cause I feel like I can't talk to anyone about how it is affecting my daily life and I feel half the time I have to hide how painful it is so I don't upset those close to me

[Yellow-daffodil in reply to writingllama19078]

Yeah I get that. A lot of people don't understand how bad it is so it's hard to explain to people

[writingllama19078 in reply to Yellow-daffodil]

I'm just glad I've found somewhere to vent my frustrations about this, it honestly scares me so much because I have no idea how bad it is, or even if the injection will stop my periods and help the pain... I want to tell my family and friends about how scared I am but I don't know how

[Yellow-daffodil in reply to writingllama19078]

Yeah it's good to let it out, and I get that. I haven't had a laparoscopy because I'm only 17 so I have no idea how big the cysts inside my body are or where they are. If you want to tell them I guess maybe explain to them about endo first so they know what it is and explain the toll it takes on you and then about how you're worried. Hardly anyone in my life knows except for two friends and 4 family members. I'm scared of saying it in case I get judged. I hope the injection works for you, I know a few people who had it and they say it's quite effective

[writingllama19078 in reply to Yellow-daffodil]

I'm 21 and they only haven't given it to me cause of the lockdown and the pandemic tbh. my family and friends know about it all but it's so hard to explain what the pain is like and how hard it is to deal with half the time

[Yellow-daffodil in reply to writingllama19078]

Yeah it is difficult. I hate when people say "rate the pain one-ten" because I honestly don't know what's normal when I'm in pain every day. I tend to use words like "tearing, stabbing, feels like my guts are being pulled down, twisting" and I try to emphasize how it's hard to even move and things like that. It's hard to describe to people who haven't experienced it.

[writingllama19078 in reply to Yellow-daffodil]

Yeah I get that too. It's so hard to describe the pain to people, and it's horrible when the docs are examining you and you find that they're pressing everywhere and it hurts. When I'm on my period properly I can't walk unless I'm drugged up to the eyeballs on painkillers

[Yellow-daffodil in reply to writingllama19078]

That's one of the worst parts about it, because it's so hard to describe people don't take it seriously and think you're just being dramatic. I remember when I first went to the doctor's about it she started pressing on my stomach gently and I was crying out in pain. I suffered for like 3 years before saying anything and took tonnes of time off school and would usually sit down because it was too painful. I used to take the highest doses I could on over the counter painkillers all the time and I felt all weird and numb.

[Tinkerbell16]

Hi, I'm sorry you are in so much pain, I suffered from age 11 and only got diagnosed aged 46! Now my daughter is 22 and I have been able to support her and she has had amazing gynecology help when she was at university in Oxford the John Radcliff hospital were fantastic, she had an MRI to check for endometriosis within 3 months of her first appointment, she is now on the pill to keep her symptoms at bay for the foreseeable future. There are resources you can download to help explain the condition to your family and friends, so they are better able to support you. Sending hugs, happy Easter. Xxx

[writingllama19078 in reply to Tinkerbell16]

That's horrible that it took that long to diagnose ☹️

And that your daughter has it too. It's a horrible condition, but I am glad that your daughter had you to talk to about it and help her deal with the pain and the worries that come with having it. I'll have a look at some resources for it, my family don't always know what's going on when I'm doubled over in cramps even if I'm not due on so just assume that I'm on my period

[Proverb]

I was experiencing the same pain 2 years ago, I then went to see Dr Jan Haider at Parkside hospital and he really helped me. He prescribed Dinogest Visanne 2mg daily and within 3 months my periods had completely stopped.

I’ve stopped taking them for now because I am trying for a baby but trust me as soon as I have my little one I’m going back to that pill. It’s worth a short, give him a try.

In the interim could you not try ibuprofen and codeine from Boots? Those seem to work as well. I hope you feel better soon.