Finally a diagnosis

[Lucyloo02]

So I was finally diagnosed with endometriosis 10 days ago after my first Lap

I didn’t expect to have a diagnosis this year . I’ve been waiting years for this moment & now I know I’m struggling to come to terms with it.

I’ve had cysts removed from both ovaries, and my ovaries & Fallopian tubes where stuck down so they have been freed. I’m so exhausted, and all I’ve spent my time doing is sleeping. My pain didn’t seem to be so bad to start with but the last few days it’s been crazy.

I’m really struggling mentally to come to terms with my diagnosis. It’s made me so emotional & i don’t know if it’s because I’ve spent so long fighting to be heard from professionals that now i finally know what’s causing all this pain, I can’t quiet believe it.

I’m also returning back to work next week, I’ll be 12 days post op when I return and my manager seems to think now because I’ve had surgery I’ll be “ better”. Despite me trying to explain it to them, I don’t want to let them down and I worry about me getting any pain at work.

I’m just feeling very alone in this journey!

[Bake2]

Hi, So sorry you feel like this at the moment. There is always support out there and the feelings you are experiencing sound extremely natural, especially after everything you have gone through to get a diagnosis.

I am scheduled for a lap in 2 weeks, feel so nervous but also desperate for answers. I can imagine once you have a diagnosis all those feelings you have had throughout your battle, and the feelings about a diagnosis, can be so emotionally overwhelming. It must take a while to sink in properly and process it in your mind.

Take your recovery slowly, listen to your body and rest when you need to. It is an emotional rollercoaster and surgery in itself can be exhausting.

With regards to work maybe when you go back try and have a chat with your manager again. I know what you mean about people thinking you are cured after surgery as people have been saying similar to me. I think it is hard for people to understand fully. I had to resign from my job due to ill treatment from fellow colleagues who just couldn't understand why I was off sick sometimes so instead they decided to treat me indifferently. It is frustrating and upsetting but if you need to go off again because of pain your management need to be supportive and understand you have a chronic condition. It is always good if you have at least one person at work who you can share your worries and concerns with.

I hope your pain improves over the next few days and you start feeling a bit better in yourself. Everyone's recovery is different though so just take the time you need. It sounds like you have had a lot to go through with your surgery.

Endometriosis isn't an easy battle but is a battle that all endo sufferers will continue to fight together. Well done for being so brave and I wish you well with your recovery - you will get there - take it one step at a time. Take care Xx

[Lucyloo02 in reply to Bake2]

Thank you so much, Yup I’ve definitely gone through a lot to get my diagnosis it’s taken my whole teenage years away from me, now I’m that bit older I look back and see all the things it’s affected in my life, work been one of them.

Unfortunately my managers don’t seem to understand at all no matter how many times I try and tell them, and my colleagues are the worst sometimes when I’ve been off they never understand at all. Before I went off for my surgery I had just spent a week in hospital so no ones really happy with me at the moment as they feel I’m letting the team down. I’m definitely gonna talk to them again when I go back and hopefully get them to understand.

I just feel so relieved to finally know what’s wrong after years of been told it’s in my head, but it’s hard really accept that this is what’s been wrong with my body for years and no one believed me ☹️. Xx

[Sadnurse]

First of all sending you massive hugs xxxx you have been waiting so long to find cause of pain and now you have answer you will need time to get your head around it …..Don’t listen to your manager they don’t have a clue…..take as much time as you need….don’t got back to work until you are ready …ask gp for an extended sick note they will understand….

It maybe a idea to have some counselling to help you come to term with it all….

I have been rock bottom and took overdose in past and I would hate you to get that low ….

Keep strong you can do this xxxxx

[Lucyloo02 in reply to Sadnurse]

Thank you so much, I was thinking of extending my sick note but I can’t really afford to not be in work so I have no choice to go back unfortunately.

I get what you mean about that, I have been that low a fair few times before unfortunately.

Keep strong too, hope your well Xx

[USgalwthendo]

My mother is a nurse and even she didn’t understand that I had endo for life. I mentioned it the other day (surgery was 7 years ago) and she said”oh I thought that was all over?” Lol. I almost rolled back on my feet like in a cartoon. Then I explained it to her. I do a lot of explaining. You may need to do that with work so their expectations are adjusted. Most people have no idea. Also give yourself as much time as you need to adjust emotionally this is a huge life issue and it’s hard to get used to. Hugs from across the pond being sent your way.

[Lucyloo02 in reply to USgalwthendo]

Thanks! I returned to work today and tried my best to explain it but I’m not sure they fully got it. Hoping as time goes on they understand abit better!