Tips for dealing with endometriosis pain and emotional distress

[Charlottej96]

Hi im new here and just been diagnosed with endometriosis 2weeks ago. I'm 23 and work full time so looking for some tips on pain management ❤ I went into hospital with severe shoulder and pelvic pain. I was in a week before surgeons conducted a diagnostic laparoscopy and found I had deep scarring from the endo on my uterus, tubes, and surrounding pelvic areas. I also had a cyst burst on my right ovary which I was informed that was why I had the pain. After 2 ultrasounds and many internal examinations, I was told that I may have PID (pelvic inflammatory disease) as my pelvis was full of fluid and blood. I had the surgery two weeks ago and still in severe pain resulting in a trip back the hospital yesterday. I've been given microgynon pill to slow the bleeding and reduce the growth of the endometriosis. The scarring and incisions they have have had to make to get rid of the tissue have possibly affected my fertility quite a lot. I'm looking for some tips please ladies as I'm struggling to come to terms with this at a young age💙

[Beestaree]

Hi Charlotte, I'm afraid I'm older than you & can't come to terms with my illness for different reasons. The one thing I can think of that may also help you is to be open & honest with those closest to you about how you are feeling because you need lots of loving support. Also, you could try practicing mindfulness every day, see if an anti-inflammatory diet may help & explore if flexible working would be beneficial.

[Chrysta123]

Hey,

I’m sorry to hear how bad things are for you. I am 24 and understand how much of an impact it has at such a young age, try not to focus on the ‘what ifs’ like fertility issues until it comes to that though if you can

In terms of pain management I would say from personal experience that heat pads are a life saver - I bought one that can plug into the wall which does restrict me from leaving that wall but it helps so much! Also if you once you are healed up more exercise did used to help me a bit but that was hit and miss... not sure if your doctor spoke to you about doing 9 weeks on the pill then a week break rather than 3 weeks on 1 week off? I found that really helps keep all the symptoms at bay.

I do agree with Beestaree that you need a good support system (friends/family/partner) that you can talk to about it and just be as open as you can be about how it is all affecting you not just the physical pain but emotionally as it really does take a huge toll on emotional wellbeing! I spent years not really talking about it as I got told I was being dramatic or asked why I can’t take paracetamol like everyone else but once I started trying to explain to people what was going on and that I really needed emotional support (I wasn’t in a good place from it all) then I found it really did help

Keep in mind 2 weeks is really soon after surgery so some pain is normal, you need to look after yourself and take it easy! It was 3 weeks before I could go back to work/drive and another 4 weeks on top of that before I could do things like lift heavy shopping and walk my dog!

Sorry for such a long reply but I hope you find something that helps ease your pain and good luck with the rest of your recovery x

[Charlottej96 in reply to Chrysta123]

Thank you so much for your reply. The pain I still have is the original pain I went into hospital with, nothing to do with surgery. I was back to a and e on friday to be told that it's just your endo and theres nothing else we can do and the pain is probably resulting in missed endo on my uterus from surgery. I went to my GP on monday for stronger painkillers as I'm back to work next Tuesday. They have also referred me to pain clinic and another NHS gyney. Also I'm on the pill for 9 weeks without break yes x

[Chrysta123 in reply to Charlottej96]

Has anyone spoken to you about getting a tens machine? I haven’t used one myself, but I have heard they can help if you wanted to mention that at the pain clinic x

[Charlottej96 in reply to Chrysta123]

No, no one has x

[Chrysta123 in reply to Charlottej96]

Maybe worth asking about it to see if an option to help keep the pain more under control

Good luck anyway x

[AllthatGlitters]

Hi Charlotte I am older than you too and I struggle with my diagnosis as I have some really dark days when I am in pain and bleeding. Just wanted to say you are not alone. It’s not an easy road with getting help and support. I hope you have a good GP like I do. You will find lots of support on here x

[Charlottej96]

Thank you hun ❤ much appreciated. Having to stick to my tramadol and morphine for the time being xx