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Endometriosis UK
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Endometriosis puts life in a weird place.. how do you get control back

I’ve spent a year of my life controlled with 2 lots of surgery , zolodex injections, pain and waiting, life feels on hold and just passes by so quick because of it.. how do I get some control back. I’m only 27 and should be in my prime in life jetting off on holidays and having a great time but I feel time is slipping through my fingers due to this illness and I feel like I need to try and organise myself to make most of the days that I am ok..

I’m sure others feel like this too and not just me?

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Hey,

Yes I can relate to a certain extent. I was diagnosed with endometriosis (severe) on April 26th 2018. Spent weeks recovering from that and just had my second MAJOR surgery 6 days ago.

All I want to do is go out and enjoy myself but that would do me more harm than good at this stage. I had a lot of work done including a large chunk of my vagina cut out and layer of bowel taken away. I’m

expcecting to feel fantastic at this stage but I know that’s a bit ambitious considering what I’ve just had done.

I’m starting counselling this week to try and make sense of everything. This diagnosis is a hard knock both physically and mentally x

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Hi Kate,

Sorry you feel this way. I'm 24 and feel exactly the same. I've had 2 laps, zodalex so we sound similar. I can't do half the stuff my friends can do. The GP has recommended speaking to someone about it in therapy. Also the headspace mindfulness stuff was recommended.

I have found its taken a while for friends to understand the condition and the last minute cancellations that make you feel awful. I would also say trying to do loads on your good days also has a knock on affect on fatigue.

I have tried to go on holiday and slept an awful lot it was a shame for my partner but it can be done!

Hope you get answers x

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It’s hard because the days feel like they are flying by. I’m trying to read a few E-books on mindfulness and how to make the most of time but it’s still not easy.

I sleep more due to everything still in bed now at 11am and I can’t work full time as if I work full time I end up in more of mess with pain etc. It sometimes feel I’m just sat at home and the days are slipping by. I’ve got to get some control back!

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Hallo, I felt exactly the same. My endo had got so bad I was going through conduct & capability at work through so many days missed, chronic fatigue, pain, bla bla bla.

You’ve taken the first step by asking that question: how do you get control back?

I was referred to a BSGE approved specialist who asked me, what is that you want? But to answer his question, I needed to know what I wanted, in order to ask for it.

It’s as simple as that - what is it you want? The next bit’s harder because you have to decide what that is, and that’s where counselling can come in. A good counsellor should help you pick apart all the other crap and focus on the important things that you need, to get better. They should also help you with acceptance - of your condition, of your symptoms, your pain, your fatigue, your fear and frustration. It will take time, because it depends on the treatment you decide to take, but that is part of the acceptance.

Good luck, I hope you get control back!

Laura

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I’m already under a BSGE and had my last surgery to remove all the disease in April but things aren’t perfect I still am in pain :(

I’ve booked a holiday for October to Vegas because I need a break after 2 surgery’s and one round of zolodex I need something to look forward to.

I’m currently on a gluten free diet / red meat free diet and have been since April but haven’t noticed a dramatic improvement

I think it does stop me doing things because for one I can’t work full time as I’m just not reliable enough i spend most of my time at home which mean the days can fly by I guess I just want more control back and not wasting my life indoors and in the house. Life is really short and it sometimes feels Surley this cant be just be it me stuck at home in pain

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You poor thing! It must be so frustrating! Please don’t feel like you’re wasting your life indoors, you clearly need that rest. I stopped feeling guilty about having naps during the day years ago (I’m also diabetic and can pass out for a couple of hours some days). Don’t feel guilty that you can’t work full time. I’m guessing you must have good and bad days? If so, then you might have to be more opportunistic with the good days and accept you can do bugger all on your bad ones.

Unfortunately treatment takes time, and this is what you need to accept for the time being. It’s not giving up though, just accepting what you can and can’t change *for the moment*. If your diet isn’t doing you any harm then keep persevering, but again your body needs time to adapt.

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I too feel the same. I'm facing disciplinary at work for my absences. Ive tried and tried my hardest to keep on top of pain and now it's all gotten too much. I'm slowly building myself back up one step at a time. I want to first gain my cobtrol if pan back, then get my independence back to drive, work, see my friends, cook for my husband. Stand on my own two feet. All thus will come I believe. You have to fight for your life. It's the little things that build to one big thing. x

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It’s horrible bearing the brunt of work problems when it’s not your fault. My ex-manager was the problem, and luckily HR were more supportive. I seemed to be in the right time and place because my colleague had just changed her role to part time and I suggested a job share, which they agreed to. So now I work 2 days a week, giving me more time to look after myself; I can go to doctor/hospital appointments, rest without pressure or guilt, cook from scratch, whatever I want. Much happier!

Sounds like you’re doing the right thing - one step at a time. Keep all your records, references, letters, everything - that helped with my case, to the extent they probably realised it was building up to unfair dismissal.

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I want my life back

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Oh I know this feeling so well. I'm still waiting for my diagnosis (the wait list for the BSGE center where I am is like nearly a year, so I've been waiting since August for an appointment). It's soul destroying, meanwhile I have to plan out months in advance if I'm doing something, it's like, if I go out for a night I have to plan my pain meds around it, I will suffer for days . I used to go to the gym 6 days a week, now there’s some days I can barely walk for 15 minutes because my pelvis starts screaming in pain. It’s like my whole life has ground to a halt and I’m sat alive but not living while waiting for an appointment. I mean I’m 28 I should be able to walk, I used to run 10Ks I used to be able to do things and now its like, it’s just frustration that makes me sob. There’s been nights I’ve cried myself to sleep, I feel so alone, most of my friends were from running groups and the gym, so now I can’t do anything all those friendships have fallen apart.

The only way I’ve found to cope with it, is trying to find something constructive I can do. I started knitting teddies for the local neonatal unit during their appeal, I did as many little charity things as I could, spent a few hours helping here and there in little chunks, things I can manage. I kinda felt like I was doing something constructive in a way that I could cope with. If you are close enough, join an Endo UK group, I’m sure you’ll find lots of people there who are in the same boat as you, I wish we had once in the north of Scotland. Reach out to other women with endo, I’ve found a great sense of community via endo groups etc on facebook and twitter. I’ve found a lot of comfort in knowing that I’m not alone, and that I’m not the only one who feels like this.

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