Does working or being a long time on your feet worsen your pain? And has Prostap/Zolodex side effects made it a struggle for you to work?

[Zolta]

I was a full time support worker for disabled adults and was doing 13 hour shifts 3 days a week and was doing well until during a period I had sudden onset of pain so bad I had to go to A&E and 4 months later diagnosed with a cyst in my ovary and a year later diagnosed with endometriosis. I am now back to working bank support after taking months off sick. The company have been supportive and I tried to slowly get back to doing full time work after a month of recovery from laparoscopy. I got so exhausted because of the Prostap and hot flushes I found it very difficult to work past 7 hours, and felt pathetic since some colleagues are at menopausal age and they seem to manage the long shifts.

Since being off Prostap, mild pain and discomfort has returned a little and I am apprehensive to work as being so long on my feet triggers a lot of bloating and exacerbates pain. This has meant that I can only now do bank support work in the same company as I can calculate doing 3 shifts a month around my cycles. I need to plan everything from work to holidays to meeting friends around my cycle. I sometimes worry I was being a hypochondriac for feeling too unwell or exhausted to work (especially during periods) or worrying that work will cause me problems, when it seems all my female colleagues go through their monthly cycles without much of a problem. Has anyone else experienced difficulties after working, does it make you bloated and worsen your pain?

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Hi

I know where your coming from. If i've been on my feet all day and rushing around the pain is so much worse. I'm not on prostap so I can't comment on that. I only get through each day by taking tramadol and co dydramol, it does send me a bit loopy but it is the only way I can cope. Do you get the people that just roll their eyes at you and you can see they are thinking stop being so mardy? I hope you start to feel a bit better soon xx

[LadyA]

i ust to work 60 hours a week! but i cannot do it any more and also on bank staff! its so hard to work and i work in a care home so im standing all day and makes me pain alot more worse, im on tramadol, naproxin, codeine, ibuprofen and paracetomal and i also use a tens machine, but they dont do a whole lot, just ease it a little xx

[Zolta]

Thank you Miranda and LadyA. I am sorry to hear that only the use of strong painkillers get you through the days, I used to have to take Tramadol, Diclofenac and paracetamol during my periods before my operation as the endometrioma in my ovary used to bleed and cause so much pain. I remember when it was Prince William and Kate's wedding day I was in my PJ's watching it on the TV on the floor crying my eyes out in a blanket hugging 2 hot water bottles one on my front and one on my back - what a sight I was! Those painkillers used to dry me out completely which does not help endo at all, so was taking laxido twice a day as painkillers completely messed my system. Also when was taken to A&E I was given large doses of morphine as was in so much pain was vomiting everywhere, and metoclopromide to reduce sickness feeling of the morphine and a drip in hospital as was on standby in case they decided to do an emergency laparoscopy on me.

The evil cyst ruptured every month so my pain is related to my cycles so some days are pretty much pain free and others not so good at all, women with bad pain every day are so strong bless you I do not know how I would be able to carry on. Thankfully the pain is nothing like that now since my lap to drain the cyst so pain during my periods is not quite so bad and do not dread them every month like I used to. But during ovulation and few days before my period I get so bloated and uncomfortable I can't walk very well.

People at work are very curious as to why I am not at work, my finace also works for the same company so hears what people are gossiping about. The most prominent rumour was that I am pregnant! It made me feel hurt and angry when I was at work, slumped on the sofa when I said 'god I am so tired!' and a colleague said 'i hope your not pregnant are you?!' I thought yes, with the fact that prostap stops all my hormones and that I am not on any hormone replacement therapy, of course I am! I just said no, but it hurts when people stay stuff like that as I do want children but finding it difficult to conceive.

I did not realise how naive the population is about this disease, some people at work know I had an operation so I think they realise that I was not just being a little drama queen about being unwell. But, if I did not have the operation then I think people would be much more judgemental, the ones that ask if I am all better now I just say, well, improved, but not better yet. And if I explain what endo is they kind of get grossed out and then I think believe that it is horrible, but have to explain it in a way that makes it sound really horrible like that it is pretty much cells that respond to hormones and they bleed internally every month causing scar tissue. I think men are more understanding than women are. I was in the staff room having lunch and a couple of young women that had a cold were talking about taking days off sick and that they thought that women who go off sick when they are on their periods are pathetic and should go of sick when they are really ill, now that made me feel really angry and felt like I wanted to have a go at them for being ignorant, but then I suppose they cant help being naive as most of the population are when it comes to reproductive problems, if they don't have issues themselves why should thy know about them? I think that schools should educate their teenagers about possible diseases to make them aware and show the different variants of uterus and abnormal variants that are out there, as they say 'this is what you girls look like inside' ...! I wish! Being born with a unicornate uterus, I don't look like that!

Lady A I hope your lap next year year will help you as it did me, my life was totally controlled by the disease before my operation. I am worried I will bloat out and feel pain again if I start working long shifts again as last worked in September and was very uncomfortable at end of the day. I often feel anxious about the consequences of being on my feet for a long time, the 4-6am ambulance call outs still haunt me at times when I get pain as worried something like that will happen again so guess since not being on prostap I would rather prevent myself from doing a lot of physical stuff and be on my feet 'just in case.'

I was wondering do you manage to keep up with friends when in pain? My endo is so unpredictable it's difficult to arrange to meet up with friends and family. I miss my old life of being able to have the strength to visit friends as get exhausted so much more than I used to, is exhaustion also symptom of endometriosis? Sorry about the essay, but there is a lot of stuff on my mind and helps to write it out. xx

[LadyA in reply to Zolta]

I hardly get to see any body! The shop is a 5 minute walk from me and it takes me at least half an hour to get there! when i get back i have to sleep for a few hours because im so exhausted!!! And work takes me TWO busses! So that really kills me, ive not been able to do more then 2 days a week!! Just have my fingers crossed for the op now! And after i think ill have to look for a new job, as mine is too physical, Working inn a large care home, cleaning every ones clothes etc. it hurts my body and takes it out of me! and yesterday, i just felt dizzy and sick, and like i wanted to faint, i had to lay down ad ended up sleeping for a few hours! Thank god i havent been sick in just over a month, so its been nice not puking while in awful pain, but i bet now ive said that im gonna be sick now!! lol ! Look after yourself!!! xx

[84Rach]

Yes, I'm having a tough time with my endo and my job is not as physical as yours, but I've had to ask if there are modified duties I can do. I am also on the bank, I was employed through the bank but everyone who started when I did have been given contracts apart from me and another person who has also had health problems! I do spend quite a bit of time on my feet at work, and feel awful afterwards, when I get home I'm completely drained.

When I was on Prostap, the only thing that stopped me working was a really bad episode of back pain, which I think might have been triggered by me having so much more energy and overdoing things physically. But then there is the theory that my back pain might be endo-related!

I don't know where you're at with treatment, but you should let your doctors know about this. Unfortunately endo can really affect our working lives, but try and keep going as much as you can. xxx

[84Rach]

Wish I'd seen your reply before I sent mine!

Exhaustion is my worst symptom, to the point where I'm convinced I must have some other type of autoimmune problem. Just before I was diagnosed with endo, my GPs were thinking about labelling it ME. I'm just so tired permanently, but that really subsided on Prostap. If exhaustion and overwhelming fatigue are symptoms of endo (quite a lot of people I've spoken to seem to have it) then I wish it was listed as a symptom more prominently, because I'm sure I'd have been diagnosed at least 5 years earlier!

As for friends, I very rarely see mine now. I still live in the town where I went to Uni, and most of my uni friends have moved away. When I do go anywhere to visit people, it's always to see my parents, and it's usually a flying visit since I get no paid holiday, so have very little time to catch up with friends there either. Usually after going away for the weekend, I get ill about a week later, possibly due to the 'stress' of it all (mad!). I live on Facebook, just to feel as if I'm in touch with all my old friends, but I'm not really

I also find it helps to write out what I'm feeling, since not many people in the 'real world' actually have much idea how it feels. Just helps in a way to know that other people go through similar experiences, but then it frustrates me that there's no cure and wonder how many actually go through this, esp without a diagnosis.

My lap hasn't helped me much, think it did at first, but now I think I'm as bad as ever pain-wise. Perhaps they missed some of the new endo that's difficult to see, who knows?

Trying to think of something positive to end this with, but struggling today! xxx