Endometriosis and work :(

[Stephiex1993]

Hi I'm new here! I'm 20 years old and have recently been diagnosed with endometriosis as I had severe pain since the age of 13! I've had a laparoscopy but the pain is still everyday and is affecting my everyday life. I was on ESA but was told by my consultant that I could go back to work however since my new job u got last week, after 1 day I've already had to call in sick due to agony. I'm on a tri-cycle pill as well as tramadol and I am still in agony or sleepy from tablets. I am a chef so my job is pretty hard to deal with with endo. I just wondering what people think I should do etc? As I've had no help or advice since day one feeling a bit alone and beside myself and no one seems to know how to help

[nikkijane1967]

Im so sorry you have to go through this endo pain too. Can you see your Dr again ? Or ask to be referred to gynae clinic ? I've Been to see an endometriosis pain clinic Dr. I take amidtiptoline, 50 per night.

[As-17]

Hey stephiex sorry to here about ur endo! Ask ur GP to refer u to a endo specialist this is a accredited site bsge.org.uk/ Check the centre in or by your area. All the best Hun xxx

[scientistlorna]

Hi Stephiex,

Your situation sounds similar to the one I found myself in - had severe period pain since the beginning of puberty, and struggled with it well into my twenties. I was on 90mg of codeine and 1500mg mefenamic acid a day - I was tired all the time, struggled to stay awake, even when I wasn't on meds. I had a lap, and they found very minimal endo, but they lasered what was there. It was suggested I have the mirena coil fitted, and a couple of months later, I did. I can tell you, it has changed my life - it started working immediately, and nearly four years later I don't get any periods, and certainly no pain. I suggest you try this, as it sounds like your current medication is doing very little for you. Go back to your doc and have a chat about your options, the family planning GP at my surgery fitted my coil, so it'll just take an appointment with them.

Hope this helps, all the best.

Lorna

[Stephiex1993 in reply to scientistlorna]

Thank you for your reply. When I saw my gynae consultant he said he wouldn't fit the coil because I haven't had kids etc none of my doctors have seemed to help and I wake up everyday in more pain than the day before. I was on mefanamic acid before and it did nothing for me. I can't even get time off work to see my gp as I've only just started I'm in such a sticky situation just want out of being a chef but I still need the money

[Hidden in reply to Stephiex1993]

Sorry to be abrupt but what you have been told is nonsense Stephiex1993. I haven't had any children and the Gynae has had me fitted with the mirena coil. It normally lasts 5 years but you can choose to take it out before then and periods are normally back to normal within a couple of months of taking it out. I would go back to your Gynae and insist that he tries you with the mirena coil. xx

[Stephiex1993 in reply to Hidden]

I was suppose to have in fitted in my surgery but I had complications so when I had a follow up appointment I was pretty much told have a kid or stay on the pill. This is what I mean by I have no idea where I stand because I get shoved off all the time. Work don't even understand how I feel to the point where I may even leave again cos I know I'm just gonna get sacked for time off sick

[scientistlorna]

Find an alternative surgery as the previous responder is right - you shouldn't need to have a child in order to have the option of a coil fitted. I don't have any children and my gp fitted it with no problem. You shouldn't have to give up your job because its too hard to cope. I can tell you a desk job will be no better for you.

[Stephiex1993]

It was my gynaecologist that said no to the coil but I have no idea why other than the kid thing cos that's all he actually spoke to me about the whole 2 seconds I was in the room. It was the worst follow up appointment I've ever had he had no idea what to even say or do.

[scientistlorna in reply to Stephiex1993]

Find a different gynae then. I was given multiple options after my lap, one was children, the other was the coil. Medically, children may be the best option, but I've also heard stories of this not working for some women, and its certainly not the best option if your circumstances are not stable enough for children.

If you are unhappy with the service you have been given by your gynae, find an alternative, someone who is willing to listen and put your needs first, rather than their own prejudices and ideas. Go back to your family planning clinic and tell them how its affecting your life and your job, tell them what you're after and make sure they help you. The family planning clinic will have alot of experience fitting the coil, so even if you do have complications, they should be able to help you the way you need.

[Bez76]

I also had the coil fitted back in May and I don't have any children. I definitely think you need a second opinion - it's worth it if it can make you feel better. x

[Bryonybear18]

I would suggest you go to a different doctor when you can, I'm on Tramadol as and when I need it and paracetamol 8 times a day. Currently im on cerazette, this I tell people to avoid most people who iv spoken to agree it sends your hormones and emotions crazy. When I spoke to my GP, I was pushed from pillar to post and it wasn't until I went in demanding a sick note that he actually advised on pain management.

He explained that paracetamol is crap if you take it every now and again but taking it constantly builds up in your system, I cant take any anti-inflammatorys but have you tried any of them as this is usually what they recommend?

I still get daily pain but am currently working over 50 hour weeks. I try to avoid Tramadol unless I physically cant move as its a nightmare working whilst on it.

Have you tried changing your diet, I've been told this can massively help with pain.

Definitely try speaking to your GP, can you not see if you can get a phone appointment and call them whilst on your break at work?

Personally I would try to stay in work, staying at home I found just caused me to dwell on my endo and everything that comes with it.

Good luck, I hope you get some help soon xx

[memyselfi]

I agree that you should get a second opinion about trying the Mirena, and maybe also ask for a referral to the local pain clinic.

The Mirena hasn't got rid of my pain, but then I'm 45 and have scarring and widespread endo that my surgeon couldn't remove. What the Mirena has done is stop my excruciating uterine period pain and I feel less tired, presumably because I'm not losing so much blood every month.

I haven't had children and it is almost impossible to do a smear test on me, never mind insert a Mirena, so I had the Mirena inserted during a general anaesthetic. It is quite usual for women who haven't had children to need it done under anaesthetic, whereas women who have had children just go to their GP. As it could make a big difference to you and as long as there is no other medical reason why they don't think you should have it, I would stamp your foot and insist that you have it.

Unfortunately, for many of us, there is no miracle cure for this condition and part of what you need to do is learn to live with it as best you can. I wasn't diagnosed until my thirties by which time working had got so difficult I was beginning to think I wouldn't ever be able to hold down a job. I had a series of employments during which I would get so tired and so run down that I would leave, have a break and then look for something else. I was being told by doctors that there wasn't anything really wrong with me (the diagnosis was stress related IBS) and so I got very depressed thinking that all women experienced the same pain I did and I was just being pathetic not being able to cope so I took easier and easier (and lower paid) jobs in the hope that I would cope.

I now know that it was not normal. Had I known I had endo when I was your age, I would maybe have made different choices. I now manage my life in a similar way to someone with ME. I have found interesting, worthwhile employment in a school which means I get frequent holidays during which I can rest and recharge, I do regular light exercise and if I feel at all tired when I come home from work, I eat and go straight to bed. My job is my priority over my social life. This and the Mirena have meant that I have very few days off sick, and none because of the endo in the last year.

I take soluble diclofenac, paracetamol, codeine and amitryptiline to help with the pain.

[Impatient]

I've got the mirena in too - and it transformed my life -literally . not had kids and also have a very deformed uterus too - so it is absolute hogwash to say that you cannot have a mirena installed because you have not had kids. The manufacturers don't recommend it unless you have had a pregnancy- but that doesn't mean it is banned. It simple means that it is likely to be less uncomfy being installed in the first place. If you do the chance to have it put in under your next general anaesthetic, then definitely worth trying.

It enabled me to go back to work..albeit part time, but nevertheless I am working again. no periods no period pains no PMT etc. nothing periody to worry me every day. like do i have enough tampons and towels with me, enough pain kilers, when will i come on how long will i be on for and all that guff. I am free of all of that thank goodness.

It does take a few months to settle in to working - but when it does. WOW liberating.

[endohope]

Going back to your original question about work - I am able to work full-time with endometriosis it is possible, but it depends a lot on the type of work that you do and your employer.

Firstly, to get this far you'll have gone through a great deal, so I know it's hard, but you need to resist the urge not to be so hard on yourself. Going back to work makes it so easy to compare ourselves to the ability and energy of others and to work effectively with this disease you have to listen to what is personally comfortable for you.

So don't cut yourself up about one days sick leave while you're still adjusting back into working life.

Hopefully by going back to work after ESA you'll have a supportive employer that can be made more aware of your needs to help you work with illness. It's tricky when you're starting out in a new role, and it's down to your personal confidence, but I'd encourage you to speak to someone where you work (perhaps starting with your line manager or HR team?) so you can start to be open about your illness and start to prove that actually, you have no intention of flaking or messing them about you're merely trying to do the best with the limited resource you have.

If you can you need to start communicating at work so you can perhaps feel supported at work and less under pressure to endure pain.

Endo UK have tons of information on talking to your employer, perhaps try giving the helpline a call for specific advice, it's doable even though it seems impossible now!

P.S I have a mirena fitted too, and I do not have children. It can be more uncomfortable and more sore/crampy in the first few weeks/months if you have not given birth, but it is possible.