Work and the many losses of this disease - Endometriosis UK

Endometriosis UK

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Work and the many losses of this disease

I have recently taken medical retirement due to bladder complications from endometriosis. Frankly it's been very weird! I have only ever studied or worked so I feel a bit lost at times. Although I have had a lot of time off sick for surgery, I always felt I had 'beaten it' because I still had my job. But not any more.

Sometimes I feel very angry about having lost so much due to endo - big losses that I am reminded about every day include:

The physical ones:

- my rectum

- more bits of bladder than I care to remember

- having lots of energy

And the emotional ones:

- the confidence to have new relationships

- fertility

- the career that I worked so hard for

So, I am facing the anger head on. Counselling is helping, along with painting and amazing friends and family. The people who pull through for you aren't always the ones you expect to.

I miss working in a way that is hard to explain. I had a high pressured job working long hours in a senior professional role. It took me many years to get there. My former boss tells me I am now unemployable despite a string of qualifications and 18 years of experience in my field.

On good days, I know I am lucky and have been treated well. But on bad days, I am afraid that, even with trying to be positive, I can't hide my sadness on this. Somehow, our losses have to be mourned before we can move on.

I am really looking forward to the day when I know I have moved on from this.

Take care ladies xxxx

8 Replies

good luck workng thru it hun. are you a christian? i became one this year, just after i finally got a diagnosis, turned my life around, it also lead to 2 tools which were better than counselling, as you actually get 'the key' xxxxxxx

Raggyrat, It's the same with me, i have been christian all my life, but this year when everything got really bad, i moved further towards it, and i feel it has helped me in some way! Carol_p I cant say i know what your going through, as yes i have a job but ive not had to work hard or study to get where i am, it must be devastating for you, but in one way i can relate, i love my job, but have now been made bank staff as i can hardly work any more! and soon i feel im going to loose my job as this horrible thing inside me, is getting worse and worse, im terrified to eat and go to the toilet as it hurts so bad, and the pain is unbearable and i have now started getting chest pains that make me want to sob like a baby!! Not to mention a disgusting mettallic taste in my mouth and all other thing to add to it!! Take care of yourselfs!!! and remember your number 1 right now! And your health is more important then anything else! xxx

Lady, I'm bank staff as well, but even that's under threat, we don't get treated very well and feel under pressure to get back to work before we've recovered enough. I only took a week off after my lap, despite still being in agony. I'm really struggling to balance my life with this illness.

Carol, be thankful for the achievements you've made. I'm sorry you've had to take early retirement and have lost so much, but I hope that you can get around this psychologically with the help of the counselling. I've studied too, just finished a masters which took me 4 years, but not had chance to start a proper career. I'd like to say 'yet' after that sentence, but I currently don't believe it. You sound intelligent, do you have any skills that you could make into a 'job', you mention painting? Perhaps you could exhibit your work one day, or perhaps find a job that you could do from home at your own pace (which is what I'm just beginning to look into, although much easier said than done!).

Good days are great, but I think bad days set us back further than good days push us forward. It's so true about acceptance/mourning, it really is the same kind of thing we go through.

I hope the day comes soon where you feel you can move on. Good luck. xxx

I'm so sorry to hear your feeling this way, but you seem to be attempting to tackle this head on which is great. Just remember, you have other skills to offer. Maybe some voluntary work/fundraising with Endo UK or your local hospital. Or train to counsel others in this area. Your allowed to be angry and upset, but you can to take those feelings and turn them into something positive and constructive. I wish you lots of love and light for your future, which doesn't have to end here. Never let this disease beat you, there always other options. Good luck with whatever you choose to do. xxxxxxxx

I just wanted to say you have so much to offer don't let this crappy illness get you down.

I met you at one of the endo conferences and I know how much you have done for the charity.

Thanks for posting with openness and honesty about the impact that endo has had on your work life and personal identity. I can understand how bereft (and robbed?) you probably feel to have become medically retired. I think you are being so proactive in finding ways to redefine who you are through counselling and by passing on skills/experiences you have to offer others/us. Similar to you, I have studied hard over the years, worked hard in a professional role, long days as well as bringing up my daughter, as a single mother with help from my parents.

Three years ago when my daughter went to university, I had the biggest reality check of my life which coincided with a routine smear which changed my life considerably. For years I had visited the doctors with gynae troubles and it was recommended that I try evening primrose oil which I did with little/no benefit) and that my symptoms were purely PMS e.g. bloating, headaches, mood swings, tiredness. I recall returning from work and sleeping from 5pm until 9pm, eating and then returning to bed at 10pm for about 2/3 weeks of every month. The sleep did not refresh me one bit but my body was crying out for me to stop/pay attention/slow down. The endo was undiagnosed and playing havoc with my body. I'd piled on 2 and a bit stone in weight. Following a smear, a polyp was spotted and it was only then that I was referred to see a gynae. I explained my other symptoms to her. She diagnosed me with endometrosis at this time having had a look around. Since my diagnosois, I now work only two days a week and build in regular 'sleep slots' to my week to keep me recharged to make work happen. It still sounds crazy to me that I can only manage to work for the equivalent of a weekend and I then I have the week off! I really love my job, my colleagues have been supportive and my boss even better. She visited me twice after having a partial ooperectomy through endo in September and has a genuine interest in how this condition affects me because she actually cares to notice. I know I'm lucky as this is just not the case for many managers. I am still in pain, feel hungover/tired/drained (without having the party) and I am focusing hard on my diet (see blogs on diet/nitrition) having started on gluten free two weeks ago.I know endo will continue to be a struggle and the only way to move on is to manage every aspect of my life which I once just simply took for granted. On a positive note, since reducing my hours at work I have met and joined in activities including yoga, refexology, reiki which all help me. I have discovered who my precious friends really are and some lovely surprises from the least expected people along the way when I have shared my experiences and vice versa! The impact on my personal relationship has been challenging ito say the least and I'll save that for the next chapter hahaha but he's still here lol. I am back to see my gynaecologist this week and I hope there may be more help on offer to help me with pain which doesn't go away. I feel like I am carrying chards of glass inside my pelvic area. I really hope you continue to enjoy painting and plenty more new experiences as well as working for such a worthwhile charity especially supporting some of the younger women who contribute and seek support from this site. Keep us posted. Good night xx

Thank you so much for all your lovely comments :-) one of the really positive things about sharing our stories is knowing we are not alone and that there are loads of amazing supportive ladies out there. Thank you so much for being amazing. xxxx

Dear Carol

I was shocked, angry, saddened yet inspired by this account. I am most incensed by your former boss's comments that you are 'unemployable' - what utter rubbish and you must cut this person out of your life - they need to get a grip. I don't know whether you are in a trade union but it sounds to me like you could claim unfair dismissal as endometriosis is a disability and employers are obliged to take this into account following the Disability Discrimination Act (2005) and Equalities Act (2010):

You obviously have many talents and skills - writing this blog for example. You mention you have a string of qualifications - perhaps you could do a PhD if you haven't got one already? Universities are better employers than your old boss sounds.

In terms of confidence with new relationships I think you should focus on getting your job/career sorted out in the first instance - that will boost your confidence and unfortunately money does buy you freedom these days. You will need to tap into all your reserves for this task as I'm sure you realise, but exploit all the branches of support - friends, family, associates, previous colleagues can all help in this situation and work, even if it's just part time and/or voluntary, is a great tonic.

Have you been on the Expert Patient Programme? If not I can definitely recommend it - it is advertised on the endometriosis wesbite. It's the best self-management programme for chronic conditions I've come across - it's mindblowing and lifechanging. You may find that once you've been on it it opens up different career opportunities - and a career where you are rewarded well - not in financial terms, but in emotional terms.

What EPP did for me was to break down the 'dis-ease' into symptoms - and take action that manages those symptoms. You say 'rectum' and 'bladder' - do you mean you are getting severe pain in those areas? You need to emphasise to your GP that you understand that no-one in 2012 should be in severe pain! It is unethical for these doctors that treat us not to take it seriously! Have you tried a combination of all the major painkillers - someone on this website has mentioned Oromorph? If it takes that then so be it. I presume your GP has prescribed you everything that I've been on - paracetamol, mefenamic acid, tramodol and MST. If constipation is then a problem I recommend Movicol - two sachets at once.

Like you, my fertility has been affected. Fertility does go down to 17% after the age of 35 anyway, so there's little hope for us in our late thirties to have children. We need to be realistic about that and I suggest that for you at the moment please try to be positive about your life and yourself. I became so distraught with just the thought that I was unable to have children that I had one session of hypnotherapy. It didn't oblierate the thought but it meant I could get on with my life - as I wasn't obsessed with having a baby. I met my husband one month later!

In addition to the traditional medical approaches to dealing with the symptoms (for me it's severe pain which induces nausea and vomitting) - ie painkillers, have you tried all the alternative therapies out there? Your GP/charities may be able to prescribe:

acupuncture, acupressure, shiatsu, the Alexander Technique, yoga, meditation, chinese herbal medicine, hynosis, self-hypnosis, prayer, aromatherapy, massage. These alternative therapies may be very good for some of the side effects of the medication too. Like you I find writing therapeutic - I started doing FAT everyday. Five Amazing Things. Or Fifteen Amazing Things. You count your blessings if you're having a bad day. The website 3bt (3 Beautiful things) has kept this up better than me - as the author does this every single day!

I don't think your career should be on your 'losses' list - it sounds like a fantastic asset that you need to milk now and I look forward to hearing more about it.

Love and best wishes

Anna Tatton

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