Career impact of endo: After 5 long years... - Endometriosis UK

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Career impact of endo

Starry profile image
12 Replies

After 5 long years working really hard trying to get my career back on track after a relocation, today endo forced me to make a request to reduce my hours down as I am struggling physically with fatigue.

My boss is relatively new and I had accepted a promotion into her team just as my endo took off so I tried really hard to keep going and show I'd not messed her about deliberately. She reacted badly at first when I had to tell her I'd need another op ( week 3, not the conversation you want to have to impress the new boss) but after 4 months I think she had come to respect me.

My director suddenly stopped working with me directly and I found out today she had told him, I guess in a way it takes the pressure off but it's sad too. She was actually pretty supportive when I floated the idea so I think she will probably agree. It's pretty obvious I am in pain and struggling a lot and she is starting to get how serious my surgery will be.

I guess I am just feeling the loss of my career just as I thought I had regained it, depressed at where I have ended up. I am so slow now and even with the cut I will find it hard to get through the work mentally and physically and it is a demanding full time job.

I am having to face up to the reality that I am no longer the high performing capable career woman I used to be and that was a big source of my identity and self esteem.

My hubby is chuffed and sees it as a positive. Perhaps I am being glass half empty but I am simply scared where I may end up and if I will be able to continue. Even if I canand the op goes well I somehow feel today I have lost something for good that will probably never return.

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Starry profile image
Starry
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12 Replies
MissyMe2 profile image
MissyMe2

I feel your pain. Im hoping to get reduced hours. I'm In a career that I worked hard to get where I am in my profession today. Although The last 3 years I've felt like a bluffer because I've been struggling so much.... Stage 4 endo leaves me crippled with pain everyday. I'm actually wondering if I have fibromyalgia as well. I wonder is there a link between the two conditions. I also feel like a disabled person and often wonder if this could be considered as a disability as it really does effect your ability to function in everyday life.

Sorry I'm not much help, but your not alone, we all know the struggle. I'm also in a few bigger groups and it appears very few

Woman are able to hold down full time work with endo xx

Starry profile image
Starry in reply toMissyMe2

Thanks and I am sorry to hear you have been struggling for so long, though it is nice to feel a little less alone.

I believe there are association's with CFS and fibromyalgia as they're auto immune connections apparently though I don't know the science behind the thinking or how established it is as a school of thought.

Good luck in your adjustment request. Any condition lasting a year having a severe impact on daily life can be a disability in the equality act.

Hugs x

Welsh-barney-boy profile image
Welsh-barney-boy in reply toMissyMe2

Plbakker95 I was diagnosed with fibromyalgia after my third lap. It was very long and is thought the trauma triggered fibro. Speak to your gp. Mine was fab and she referred me to rheumatologist who diagnosed me.

As for being considered a disability, I'm covered under the equality act due to the impact these conditions have on my life. It sounds like you're in a similar position. Try to discuss with your gp - more answers may help. X

Sez73 profile image
Sez73

I feel for you a lot and know exactly how you feel and my heart goes out to you as I know that feeling of losing your identity completely. I battled throughout my first two jobs with severe chronic fatigue/fibromyalgia and doctors never got to the root of the problem, and I just grinned and bared it and tried desperately to show I could still work and be "normal". Being fatigued constantly became my norm and I forgot what it felt like to be well, it took 15+ years later to finally get diagnosed with Stage IV endometriosis. Surgery after surgery brought little respite, I'd see 6 months of some recovery and pain relief before the darkness descended again and I was back to square one. I then ran my own business for 12 years and finally had to admit defeat 2 years ago and give up work properly and close my little business down and it broke my heart in two as that job had been the culmination of so many years of hard work & fight. I was utterly devastated, having been so proud of working up the career ladder to where I successfully ran my own little business and did well, and felt so lost when that went. I finally had TPE (total peritoneal excision) surgery which is much more radical for very severe endo and that at last gave longer spells of respite, but then I through 3 IVF cycles at myself last year which has battered me so it's two steps forward and a lot more back!

What can I say to advise you as someone who is still in that position - I'd say you need to boost your self esteem by acknowledging what a strong individual you are having battled this long and worked so hard. While you may not feel like you're that 'high performing capable career woman' you need to recognise that what you have lost has been replaced with an unrelenting strength which few people have and you should be very proud of that. To have approached your boss ad explained the situation, and not simply given up, but sensibly asked for a reduction in hours when your boss will know you are still doing the work suffering is a testament to how strong a person you are, so I know you can feel a real loss of identity, but the only way I found to cope with that loss was to acknowledge that I was a lot stronger than I ever thought and that other people couldn't have done what I have done as I've battled with the endo/fatigue etc.

When I get down with it all, my fiancé says he is in utter awe of how I battle on each day, while the op helped my pain levels, it's still a big fight daily, while I feel how on earth can I be attractive to anyone in the state I am in, he says he loves me even more as he has seen this inner strength which he is amazed by. So rather than focus too much of what the illness has taken from you, try and start to consider how you will have changed as a person for the better and be very proud of the fight you have undertaken, as you shouldn't underestimate that one bit. Please believe me, that quality you have to fight on in such a dignified, strong way should make you feel extremely proud of yourself.

I know a career is important, I had a successful career which I had to give up at 41 but I have taken great consolation in the love of a great man, have seen what wonderful supportive friends I have and realised that I have still gained in ways other people haven't. I see the world very differently, take delight in the small things and relish when I feel well to enjoy the things I took for granted when I worked so hard. I know it is not the same and I know how demoralising it can be, I've been there, but try your best to focus on how proud you should be. It takes a very strong character to do what you're doing and I send my upmost respect to you. I'm at the stage of trying to tentatively start considering part time work after taking about 2 years off completely, and I am daunted, racked by self doubt & self esteem problems and nervous about any interviews, but you know what, I feel more powerful inside than I have ever down as I know the fight I have every day is no where near what most people have to face, and if I have to face someone scary in an interview I am going to drawer on that inner fight which I know not everyone has! It has changed the way I look at work, I no longer want a superficial 'take, take, take' job, I want to give something back and focus on something more worthwhile as this battle does change you mentally.

I'm sorry for the long message, but I just had to right as your story rang so many bells with me and I wanted to reply properly to hopefully boost you a little bit. I wish you all the very very best and send you a big hug as I know exactly who you feel. Please don't be down on yourself, you're doing an amazing job in what has been, and still is, a terribly demanding journey and it's time to give yourself a wee bit of a break and a very well deserved pat on the back. Big hugs Sx

Starry profile image
Starry in reply toSez73

Hi Sez73 Thanks for your long empathetic reply. I am 42 and relate a lot to your comments. I am blessed with a wonderful supportive hubby. I have had a mini business in the past when I first moved and may yet have to say goodbye to corporatedom. Guess what will be will be.

Glad you are doing well enough to consider a P/t role. Good luck you are incredibly strong to have survived so long. Ive only officially been diagnosed 9 months x

Welsh-barney-boy profile image
Welsh-barney-boy

starry - I totally get how you feel. I've worked hard to get my professional qualifications, and to improve myself during my career. Endo has taken so much away from me and my attitude has always been that it won't take my career away from me. However, that all changed following my decision to have a hysterectomy due to the persistent bleeding etc that no meds helped.

I had my surgery and unfortunately I suffered major complications (came to light a few days later) and had developed sepsis. I had to have emergency surgery and was in multi organ failure,and was quite literally an hour from not being here.

It's left me with way more problems than I had before and I've questioned if I did the right thing but everyone has pointed out I couldn't have continued as I was.

It's made me reevaluate life completely - life really is too short. We are looking at other options including buying a much smaller house, and business opportunities. Work is only a part of your life, admittedly a big part, but are there any ways you can use your skills and knowledge to do something less pressured?

Your health is more important, as without it you have nothing. My self esteeem is Also greatly affected- I guess only time will see that improve.

Good luck with everything x

Starry profile image
Starry in reply toWelsh-barney-boy

So sorry to hear you had such a traumatic hysterectomy. Be proud of yourself for being so strong and pulling through. i am dilemma-ing about surgery options as there are high risks and no guarantees. Its a scarey decision but like you i can't carry on as i am much longer.

Welsh-barney-boy profile image
Welsh-barney-boy in reply toStarry

Please don't put off making the right decision based on work. You're more important. I'm going to need more surgery and will be on half pay but what can I do?

TitianRed321 profile image
TitianRed321

I can totally relate to this. I reluctantly reduced my hours a few years ago as I really struggle with chronic fatigue and pain. I think really I need to reduce my hours further, but financially I am not sure we can afford it.

I sometimes feel depressed about how this illness has impacted my entire life, but I am trying to focus on looking at opportunities for the future that I can do.

Angie205276 profile image
Angie205276

I relate like so many others. I feel like my career has been on hold for the last four years and after three operations, I'm now playing catch up when I should have progressed a long time ago. I am exhausted most of the time and my brain is not as quick anymore due to the combination of the Mirena and anti-depressants I have to take to manage the depression and anxiety side effects of the Mirena. Anyway, this is life right now. I'm extremely lucky to have a wonderful boss and husband who are so caring and understanding. Take care of yourself and listen to your body.

Starry profile image
Starry in reply toAngie205276

Hi Angie205276 i really struggle with my brain now too with coil and zoladex. Progression ideas have flown out the window as i am in survival mode. But worry a lot about how i am regarded and if i will get restructured out.

caroljane80 profile image
caroljane80

Different things are important to different people. You are not your job you are you . It's good you enjoy or feel so driven. I'm doing a reasonably good job but if I could live on less money I'd cut the hours straight away. Things arnt always permanent. It's lovely that your husband sees it as a positive. I just drag myself to a job I hate cos j need the money I have no husband or partner . There have been times Ive been so low I scare myself now to think of them. But Ive had s vaginal laparoscopic hysterectomy with ovaries removed and cervix removed . I had a lot of pain from what seems simple now which was basically hard stools and nhs loading me up more and more on opiates. I'm off the opiates. I take lactulose which is a stool softener daily and 5 months of hell pain just vanished. Feel free to pm me if you need any advice . Just don't have laser it's rubbish! Hugs. Xx

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