In need of some support

[livvi_livvi]

Hi ladies,

I have been a member on here for a while now but always been to shy to post. But I am really struggling now and need a bit of support from people who understand so thought I would introduce myself.

I have had the diagnosis of Endo since 2013, had numerous contraceptives, 3 laparoscopies and been on prostap for the past 3 years.

I had the last laparoscopy in Jan 18 and endo was removed bilaterally from uterosacral ligaments and my left ovary was removed from my pelvic side wall.

Since that op I have now been diagnosed with Chronic Pelvic Pain and have been taking morphine since to relieve the pain. I have started gabapentin and last week had an ilioinguinal and ilohypogastric nerve block.

I have unable to go to my full time job since january and have missed a big promotion at work too.

I was just wondering if anyone else has been through anything similar as I am really struggling especially when people ask whether I am better now? What do you say to that question when I am never going to cured? Any ideas?

Thanks for reading. X

[weekari]

Hello 👋 well done for sharing.

What you shared resonated with me. I've only just been diagnosed with stage 4 endometriosis but I've been struggling to live a normal life the past 4 years. My main symptom is fatigue. I had awful abdominal pain the first 2 years but now it's back & hip pain which in some ways is easier to manage. I had a very high stress & demanding job with a lot of responsibility and it just gradually wore me down. I've been off sick since Oct last year and I know I'll never be able to go back to that type of work. Especially now that I know what is wrong and I know it's never going to be totally cured. So I'm now looking at massive changes to my life. I had a good salary but had a lot of outgoings with debt from overspending so I know I can't afford to pay for it all without my salary so I'm actually in the process of going bankrupt. At work I'm in the process of being terminated on the grounds of ill health.

I have no idea what I'll do next but I'm just trusting it's the right thing to do and that I'll be OK 😬 My life was completely unmanageable before. I'm hoping to train as a yoga teacher. Yoga had been my life line throughout this time and I'd love to be able to bring it to other people in similar circumstances - people who think they can't exercise due to illness and pain when something like yoga can help so much. I'm hoping that I can do that combined with maybe writing and some creative things that I enjoy. I'm trying to think of a lifestyle that's flexible so that I can work when I'm doing well but if I have a flare up, I can reduce what I'm doing easily and the writing & arty things I do could still be done even when I'm having a tough time.

It's pretty scary but I'm trying to just trust it all. I was deeply unhappy in my life before so I'm hoping that all these massively uncomfortable changes will lead to a better life for me. That's my hope!

This illness doesn't need to define you but you do need to have a life that is manageable with your capabilities. Maybe what you're doing is not a good match?

And as for other people... Well , this is where I get angry! 😂 I've only got a diagnosis on Friday and for me it feels like I've finally been validated. No one really took me seriously before, it seemed like they just thought I was exaggerating my feelings of tiredness or was being over sensitive. Now I have the diagnosis, I feel something has changed in me, that I now have the permission to do what I need to do for me. If people don't like that or don't understand, well that's their issue. Life is so precious and we have to live our life for ourselves and really as long as we don't hurt anyone else and act through kindness, then it doesn't actually matter what other people think!

I hope my ramblings make some sense! X

[livvi_livvi in reply to weekari]

Thanks for your reply. Sorry to hear about your troubles. 😔

Yeahh what you say does make perfect sense.

I think my problem is that my life is one that I have worked hard for and one that I enjoy. I think maybe I do need to think about the possibility of not being able to return fully to it but then theres a stubborn part of me that says why should I? Haha I dunno.

Means alot just to know that there are other people out there.

Xxxx

[weekari in reply to livvi_livvi]

Yeah I've felt like that too, especially before the diagnosis. I had a lot of resistance to changing things and felt like a failure because everyone else seemed to manage. Everyone else seemed to do my job and cope with kids and a social life and... But I couldn't just cope with work. I actually went part time at first which was a bit better. But my job just wasn't the right match for me. Maybe that could be an option? Or more of a flexible way of working, like my able to work from home if you have a flare up. Obviously that's not always possible but your employer does have some responsibility to make adjustments for you. If your company has an occupational health service maybe they could help?

[livvi_livvi in reply to weekari]

Yeahh I think my issue is that because I have done this job with my endo before I think I should be able to do it again and maybe now I have chronic pain aswell I need to realise things have changed. I mean at the moment I am still off sick as sitting or standing for longer than like 20 mins causes my pain to worsen.

My work have been really supportive in my being off since january so I think when I am well enuf to think about going back that will continue. Unfortunately, I dont have the option of working from home and if I was to reduce my hours I would also need to step down as currently I am a supervisor and I couldnt do that position part time. I dunno I am sure time will tell me what the right thing to do is. Im just reluctant to step down as I love my job and want to progress. I think maybe Im just scared of letting work down... like they think Im going to be the next manager and what if I have to tell them that I cant because im too ill??

Xxx

[weekari in reply to livvi_livvi]

It's great you enjoy your job but your health is no1 priority. If you push yourself too much it'll likely make your endo flare. It's just finding that right balance for you. There are disability laws that protect you though... It's not right you miss out on promotions etc. You are capable, you just need some adjustments. I'm sure there's a way of finding a compromise. It's just a bit of working things out and compromise. Like, I thought because of my debt I could never leave my job and I was trapped but couldn't work due to my fatigue, it was like I was sick in a vicious cycle that was just getting worse and worse. I saw no way out. but then I realised that bankruptcy would allow me to leave. It's a difficult solution but ultimately I will be able to create a manageable life. If you told me 2 years ago this was what my solution was, I would've been horrified but now I'm at peace with it. Sometimes it's our resistance that causes us the most distress.

Xx

[livvi_livvi in reply to weekari]

Yeahhh I suppose you are completely right I think I need to talk about some adjustments for when I get a flare up with work and see what we can sort out.

Its not like that sorry my phrasing probably wasnt right I missed out on the promotion as I was off sick and couldnt physically attend the necessary things to enable it to happen. But they have said that when I am able to do those things then they will consider me.

I think I need to think what adjustments could help and ask for them.

Thanks for your help today it has really helped. Xxx

[Minchoo]

Hey I have an unknown endo and there is still many unknowns going on with me. I think I have stage IV endo - however this has never been fully diagnosed or even seen. I also have a frozen pelvis. Had cysts on both ovaries - one which has burst now and hydrosaphinx were one tube is now cut but still in me! And the other tied but only at the bottom. Going to a BGSE to determine what is going on.

As for work and life I was leading a fairly normal life tbh. Until I got PID as a result of IVF and this past month has been a nightmare full of operations and being in Hospital in and out. Due to my illness I decided to freelance where I work a few months and pick and choose my contracts. It’s just easier like this, as I can work around what I want to do and have time off to rest. I am hoping to train as a graphic designer (a course from home) so I can work from home. Again this will help me as my job is demanding.

So far family have been supportive and so has my partner. But not sure how it will effect my relationships in the long term. I have lost / distanced my self from friends a bit as they are all happily married and making babies or young and single working people. I try to keep in touch but never really go into my health in depth. I always fear judging eyes and ears. I don’t know I use this forum a lot and relay heavily on my parents and partner. I decided to remove the element of work out of it - as I felt they judged and didn’t understand. For someone who wants kids I even had one manager say to me why don’t you have a hysterectomy and that was the final straw to be honest. I was made redundant in that role, but I know for sure it was due to my illness over anything. That’s why I am self employed so I can take charge of my life and fit it around this illness. I am a little worried about my next pay check but I hope to find work from home next month. Fingers crossed.

[livvi_livvi in reply to Minchoo]

Thanks for your reply. Gosh is sounds like you have been through a lot recently. I hope you get to see a gynae at a bgse soon!!

Yeah I totally understand when you say judging eyes and ears. I wish I could go self-employed but its just not an option for what I do. I am lucky in that my employers have been really good to me with needing the time off sick so far. I think I now know that I need to go back and request some adjustments for my flare ups.

Its nice to hear that you have a supportive partner and parents. My parents are amazing and I do have some good friends who try to understand but none have been through anything like this so they dont really understand. I dont have a partner as I stopped dating a few years ago due my endo and a string of rejections.

I think I do need to talk to more people on here that actually get how crap endo is and can fully relate. Haha.

Xxx

[EUKSupportTeam Partner Endometriosis UK]

Hello livvi_livvi.

I'm sorry to hear you are struggling at the moment and need some support. Endometriosis UK have volunteer lead support groups at many locations around the country. Have a look at our website to see if there is one near you endometriosis-uk.org/find-l.... If you feel like you really need to speak to someone, then you could try ringing our Helpline, which is staffed by volunteers who all have experience of endometriosis themselves. The Helpline number is 0808 808 2227, you can check the opening hours on our website endometriosis-uk.org/helpline.

Best wishes

Lynne - Endometriosis UK

[livvi_livvi in reply to EUKSupportTeam]

Thanks for that information.

There is a support group near me so I may go next time they meet. 😊

X