Help: Hi, I am new here, I am 36 and was... - Endometriosis UK

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SunnyDays82 profile image
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Hi, I am new here, I am 36 and was diagnosed with Endo in 2011, I've had 5 laparoscopy surgeries, the latest being in Jan 2019. Since the current surgery my symptoms have got so much worse and I am really struggling. Tried the Mirena Coil for pain relief which worked for around 9 months, The Pill with no break, Tramadol, Morphine, Co Codamol, amongst others.

My Fiance and I are desperate for a baby so I cannot go on any birth control again and time isn't on our side due to our age, We have suffered 2 miscarriages, I have had my tubes dyed and they came back clear.

The pain has been so bad the past 6 months, in my back/ovaries/ribs/legs, I feel like I am being slashed on the inside with a knife repeatedly...

I have taken so much time off work, I think they are getting to the point of a meeting with HR.

My family and friends try to understand but I think they are getting sick of me forever postponing things as I cannot physically get out of bed, I think they think its just bad period pains...My mother understood as she suffered with it but she passed away suddenly in 2012.

I have ended up in A and E a few times this year but both times no one could help, Waited for 4 hours to be told they couldn't do anything and made me feel like I just wanted drugs... I didn't want to go as I knew they couldn't do anything but my Fiance insisted as he felt so helpless...

My Dr when I do get to see her is very sympathetic, but believes I just need to get pregnant which we are desperately trying to do, there really is nothing they can advise or give me now which they haven't already tried.

I was due to go for an MRI scan last week but that was cancelled and I am having a Hysteroscopy procedure in September but I am sure they will postpone that as they always do.

I really am struggling with the pain and the effect its having on me mentally. I feel like I need to accept that this will be my life and that's really hard to take in.

I am sorry to vent, I am having such a bad day pain wise, I wanted to get it off my chest somewhere, where someone may understand what I am going through as I am fed up of feeling so alone with this pain. xxx

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SunnyDays82
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Endowarrior9 profile image
Endowarrior9

Hi,

Reading your post completely made me feel like I was reading my own life! I’m also so sorry to hear about your miscarriages, it’s a lot to deal with on its own, never mind the fact you have endo as well :(

All I can say is to try your best to keep going, even in those moments where the pain is so unbearable. I only just found out about this forum and I feel less alone already knowing that there are so many others going through the same thing, you are not alone.

Things I’ve been doing recently such as meditation (headspace app), Deep breathing exercises, I’ve also been seeing a pelvic physio who has helped so much I wish I’d have seen one years ago! Just a few things I’ve found helpful whilst I wait for more specialist input for the pain.

I’m always here if you need to chat, I feel it helps to get everything out in the open! :)

SunnyDays82 profile image
SunnyDays82 in reply toEndowarrior9

Thank you so much for your response, I really appreciate it, Its so nice to feel like you are not alone, even though you don't want others suffering like you do.

I am definitely going to give these a try, I am also going to give acupuncture a go this week, as a last resort..

It really has helped to get everything off my chest and I am always here if you ever need to chat or vent to me. xxxx

sarahsarah123 profile image
sarahsarah123

Hey, so sorry to hear what you’ve been through. Just thinking, you don’t say who did your surgeries, but was it a BSGE centre endo expert? Aggressive expert excision surgery seems to help when multiple ablation surgeries cannot, and may also improve fertility, so something to think about. Other than that, have you tried diet and lifestyle changes? E.g. no gluten, dairy, sugar, alcohol etc & instead lots of anti-inflammatory foods. Also stress relief things like meditation, even therapy! Then supplements like turmeric, magnesium etc? Worth throwing everything at it if you’re feeling rubbish! Hope things improve for you 🙁

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