Help and advice☺️

[Football3018]

Hi everyone, I’m 19 years old, but have been suffering for 10 years now and was eventually diagnosed with Endometriosis earlier this year after pushing for it for so long, even though on my paperwork from the doctors it says I was diagnosed in 2014 after my laparoscopy, which we weren’t told until this year.

I’m currently in a wheelchair due to the pain and being unable to walk distances due to my Endometriosis, this is my 3rd time in a chair in 7 years. I have just had my 2nd Prostap injection as a form of treatment with no HRT, as I have tried every other form of treatment and it hasn’t worked for me. The only treatment I have left to try now after I finish the Prostap course is the Mirena Coil, which I have my concerns about!

All of this is also causing problems with university, as I was unable to complete placement due to being in the wheelchair and the amount of pain I’m in, therefore they are questioning whether I’m fit to continue into my second year next month.

I have a very supportive family and partner, but it would be nice to speak to someone around my age who can relate☺️

Thank you and sorry for the long post.

[EndoSuckss]

Hi! I'm so sorry to hear you're struggling!

I'm not your age, but have been through uni so appreciate how difficult it all feels at the moment.

I know you said you have concerns about the mirena coil - have you have a chance to chat to anyone about these? I didn't really want this, but had one put in about 2 years ago and it has had a positive impact - mainly because it's stopped my cycle! I won't say it's stopped my pain (I'm having another lap in 4 days so it's clearly not a miracle cure lol!) but not having a period every month has certainly helped my mental health!

[Football3018 in reply to EndoSuckss]

Hi, thank you for your reply!

Yeh, uni is particularly difficult currently especially due to me currently being in a wheelchair due to the pain.

I have spoken to my family about the Mirena and my concerns and my consultant knows I’m worried about it but insists it should help - especially now that it’s the last form of treatment I have available after I finish the injections. I currently don’t have a cycle either, due to being on the Prostap injection, however this hasn’t helped my pain either😕. I hope the surgery will provide a bit of relief for you!

[HollieMatthews98]

Hi

I am 23 year and had my laparoscopy on Tuesday. I am in the same boat as you had laparoscopy 2015 & 2016 Gynaecologist found endometriosis but never informed me or offered treatment. I don’t know about you but I’m struggling to come to terms with that part the most, I feel so angry and upset by it.

I would love to learn more about this condition. I have mild superficial endometriosis so I know this isn’t the worse but it’s still so painful and get so mad when doctors keeping saying ‘it’s mild superficial endometriosis’ can anyone explain to me what this means because even though it’s mild it still ducking hurts.

[Football3018 in reply to HollieMatthews98]

Hi, I know it’s so annoying isn’t it? Doctors wouldn’t listen to me as I myself didn’t know what was wrong, as no one informed me! If they had, it would’ve saved me a great deal of stress and emotion.

In terms of ‘mild superficial endometriosis’ I’m not sure what that means I’m sorry, I’m guessing it’s probably stage 1 to stage 2? But whatever stage you are doesn’t correlate to the amount of pain you’re in, you could be stage 1 and have the same amount of pain as someone in stage 4 etc. Sorry I’m not of more help.

[Washington1 in reply to HollieMatthews98]

I had a laparoscopy in London several years ago and was told that I had mild superficial endometriosis. What my specialist/surgeon did take the time to tell me was that there was a lot they still didn't understand about endometriosis. It was explained to me that they had some women coming to them with severe endo, but no symptoms. They were there because they were trying to conceive. And there were others like me, who had mild endo but severe symptoms. They had no answers at the time other than to offer me the pill, but their humility at acknowledging what they didn't know did help somewhat.

[HollieMatthews98]

I feel you 6 years of feeling like it was all in my head you start to believe it. I’m on an emotional crash down now I think.

Thankyou fir you advice and support. I don’t understand mild superficial endometriosis either but I agree pain is pain regardless of the stage.

[Noodle31]

I'm not your age, I'm in my early 30s. But I remember the horror of getting through Uni with endo (undiagnosed - I was only diagnosed at 31!). The pain, the weakness, the debilitating aspects of it, the way you feel you have to explain yourself to people around you but don't really know what is wrong, and neither do they. I can't give many pointers other than to say chase for treatment - and don't stop chasing. My 20s would have been a whole lot simpler if I hadn't spent them so ill. Having said that, I did manage to get 2 degrees and live lots of places etc, but it was harder than it had to be, has definitely affected my professional life so far (working on correcting that), and my personal life (also working on that) and I didn't feel anyone was listening when I talked about how much pain I was in. Endometriosis is horrible, and it also helps us understand why so many things have been a struggle. You're only 19, but that doesn't mean you should have to live like this. Sounds like you have a great support network and a loving partner. Hold on to those things and don't give up on your aspirations. Be flexible about changing the way you reach your goals. For instance, if studying is a struggle consider distance learning or look for ways your university can support you. I didn't do any of that, but only because I was told nothing was wrong and didn't want to make a fuss. Endometriosis is more recognised now - you deserve assistance if you need it. When it comes time for work, look at ways you can work remotely, or with flexible hours. There is a way through this, I promise you. And if you need any advice or guidance or just want to vent, let me know!

[Football3018 in reply to Noodle31]

Thank you so much for replying, is there any way I could privately message you on here? if that’s ok with you too.

[Noodle31 in reply to Football3018]

Of course! There is a chat function on here - feel free to send a PM and I'll be happy to reply.

[Football3018 in reply to Noodle31]

Thank you so much!

[Ronsk]

Hi,

Sorry to hear of your problem. I went to uni for 3 years and qualified last year, however due to my pain I had to use the mirena coil or It would not have been possible to complete my course. I was on very strong pain killers prior to the coil and felt if I continued with painkillers through my course it would affect my learning as it made me drowsy and I was unable to focus. The coil was the best thing for me to do as well as zoladex injections and hrt. However , everyone is different and have their own reasons for not taking certain meds. I am now a qualified nurse , something I never thought I would be because of my issues. I wish you all the best x

[Football3018 in reply to Ronsk]

Hi, thank you for your reply! I’m currently waiting for the Mirena coil to be fitted under general anaesthetic, as when I tried earlier this year, she found I have a tilted uterus. I’m currently have if Prostap injections, however they’re doing nothing for my pain and I’m still in the wheelchair due to this. I’m on tramadol and naproxen among other tablets but they don’t seem to be helping much either (I’m trying to get off the tramadol). University aren’t helpful though, and are not making any adjustments or supporting me in any way, they just said they think I should have a year out, that’s all I’ve been offered. Congratulations on becoming a nurse though! Especially with this condition. Good luck for the future x

[Marcia71]

Please don’t take prostap as these injections aren’t licensed for those under 23 as your bones aren’t fully matured and can cause more problems. You need to get to a bsge centre and an endo specialist to help you as you don’t have to live like this.

[Football3018 in reply to Marcia71]

I’ll message you x