Wow I haven’t been on here for years and boy is there a lot that’s happened to me. Still battling my stage 4 endometriosis for over 3 years now. I’ve been on so much painkillers and seem different specialist but still no change. I’m really on the urge of giving up everything fr, I’m only 24 years old and I’ve been through so much already that I can’t even see a future with a normal life. Always battling the chronic pain and trying to work my way around it but I’m physically, emotionally and mentally fed up.
Before endometriosis I had severe aplastic anaemia and had to have chemotherapy. I’ve been in and out of hospital since I was 12 years old. I’m not looking for sympathy but just someone who’s gone through similar problems as me because I feel so lonely even with my loved ones around me. Battling with emotional depersonalisation also it’s hard to even express how I feel because I’m an emotional wreck.
I’ve tried everything you can think of and right now I’m stuck. Is there any point of trying anymore? Is this my life forever?
Written by
MeshaW
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This isn’t and will not be your life forever!! I’m sorry I wish I had something better than a cheesy cliché saying to write but you are valuable and your life is worth it, I’ve only just got my diagnoses of endo, Ande & PCO butt and all though the follow up care hasn’t been the best speaking to women on here that are in their late 20s,30s and 50s and hearing what they have achieved despite their symptoms and lack of access to healthcare makes me hopeful that we can hope for some sort of normality.
Sorry if your tried any of the below already but I thought I would include just the some of things that have been helpful to getting my diagnoses (will also hopefully help me get treatment to)
-take a note pad and pen to all appointments
-if a follow up letter doesn’t contain information you and a consultant discussed follow up with their pa and ask to be amended
-ask to see a gyno specialist for a pain management consultantion - phone your go every morning at 8am, emailing the receptionist, tweet your local NHS trust if you can’t get through (I done this And it helped get my ultrasound scan, pretty ridiculous that you need access to Twitter to get a scan)
-if your open and able to get surgery I would push for a laparoscopy as this can reduce your symptoms (had mine 4 weeks ago, still waiting for it to make a difference 🤦🏽♀️)
-apply for pip (mobility support, you have access to it even if your working as it’s not means tested, this can help you with getting around day to day)
I really do hope you get the support you need soon as you really do deserve it. Be kind to yourself, your dealing with and have dealt with a lot xx
Hi! Thank you for that, I really needed it. The thing is with the surgery, I have asked them to do it but they are worried because of my age, how severe the endo is and how it can effect my day to day life. They basically refused to do it right now.
How was your surgery? I know you said you’re waiting for change but did everything go well?
I’ve had a recent scan when I was admitted to hospital because of the pain and it’s the same thing when they checked two months ago. I’ll definitely check out the pip.
hi hun how's u doing? I'm sorry to hear that ur suffering, we have similar story's (it may be quicker to look at my profile 😂) I'm now 37 n was diagnosed in 05 with endometriosis, although I've had problems with my periods since 13, I'm no longer able to work and receive pip for endometriosis. I can completely understand you when you say you are close to giving up (honestly yesterday i had 😂) If you want to chat plz let me know 😊 it would be nice to be able to talk to someone else who understands what I go through on a day to day basis, hope you get the help u need xxxx
Hi hun, I’m ok for now and yourself? Reading your story really brought tears to my eyes. How you are able to even keep going is really admirable and I commend you for that.
Yes, I’ll be contacting you privately because it’s really nice and warming to know there’s people who are going through similar things.
Hello I couldn’t read and run. I think we have all felt like this will be our life forever. I get so fed up and depressed about my situation. I have been on this journey for 5 years now, it’s not gotten any easier for me and it changes you as a person. Had 1 laparoscopy and 2 ablations. Looks like a hysterectomy is next. Please feel free to PM if you need a chat. Lots of us understand on here how you feel as we all feel the same, I wish my friends understood but they don’t. Sending a hug xx
Thank you for this message. I will definitely message you when I feel low and please feel free to PM also. I’ve been thinking of doing the laparoscopy and I was wondering how the survey for you went? Recovery wise aswell.
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