Endo and work?

[DawnK]

Hi Everyone,

I was diagnosed in 2009 and was off work for 6 months while I got to grips with my endo and had 3 laparoscopic procedures. When I returned to work it was so difficult with the pain but I was put on zoladex and then prostrap and I was able to wok again.

In 2010 I was given the all clear and taken off the monthly

Injections, I took a new job and started to get my career back on track. Unfortunately 8 months into the job my endo started again and I was off again on and off for months while waiting to see the consultant and although work were very good it was very hard as it is a male dominated environment and I also work in sales.

I am back to work and have the stress of targets as well as trying to be in work, I can't afford to lose my job and wanted to know how other people cope?

Thanks

[Hidden]

Hi, im in the same boat as you, ive been off sick since August with endo pain, and treatments etc. Im on strong painkillers too, i cant go back yet as they make me so drowsy. I go back to see my gynae on 20th Dec, he will decide if i need a lap or not.

Im dreading going back to work, when i eventually do. I only get SSP and dont know how much longer they will pay it.Its a worrying time isnt it, nobody seems to understand our pain, only us who suffer with it.

Good luck to you, sorry ive not been helpful, but at least you know your not alone. xxxxx

[DawnK in reply to Hidden]

You have been helpful, it's nice to know that I am not the only one who has to either deal with the pain or be drowsy!!

Good luck in dec xx

[heather1]

im sorry this endo is affecting you this way! why did they take you off the prostap (im on it alswell) if it worked for you? i was diagnosed in 2004 and havent worked since 2007 as the job i worked then was easy to give shifts away so i didnt get fired, it all became way too much for me and i stopped. now it is hard to find a job that my body can handle. i say go back and ask if you can get put back on the prostap since it seems to have helped you. if painkillers make you sleepy best to try and keep off of them while working but im sure you knew that but at the same time dont not take them if you are in that much pain. id rather be disfunctional then in the amount of pain we have. i wish you all the best and hope they sort something out for you! xx

[DawnK in reply to heather1]

Thanks for your reply.

As for the injections I was told that I had been on them too long! I had zoladex for 8 months and they changed this to prostrap (which worked better for me ) for 10 months. The consultant that I was under at the time told me that my endo had reduced to just scar tissue and that I was all ok!! A few months later my cycle returned and the pain was back to unbearable. My new consultant ( I couldn't get an appointment with the old one ad had to go private in the end ) said that you should be on the injections for no more than 6 months due to long term implications not being known, especially in someone of my age (31) although I did have the add back hrt due to side effects

Xx

[heather1]

Wow! I was on zoladex as well for a year then they changed it to prostap and have been on that now for over a year with hrt it does not help my pain at all the only benefit i get is not periods which is worth it to me. they said prostap was ok for me for long term use as i have no other choice. Im 25 and been on lupron, depot, zoladex and now prostap. since i was 18 When your cycle returned it must have started the Endo up again, as the estrogen that your body produces feeds the endo and makes it grow. Even if it was all shrunk down, even the smallest of small cells can grow and quite quickly too. I really hope this new consultant can help you and get you pain free! x

[LadyA]

Hey, i've been off work now for a month and a half now, and i can't go back until i've had my lap which is a couple of months away! I'm also in a great deal of pain, and i take Tramadol, Naproxin, Codeine, Ibuprofen and paracetomol and none of it even touches it, my doctor is now thinking of giving me morphine patches! It's such a pain in the bum! And my hospital is useless i always have so much trouble with them! This time they forgot about me, didn't put me on the list for surgery and didn't even write in my notes that i was admitted for a week! It's so heart breaking to be pushed aside, but luckily i had my dad with me and he went ballistic and im now on the urgent list, so im hoping to get sorted soon! Been suffering since i was 16, and there only doing something now, im 21 almost 22 xx

[DawnK in reply to LadyA]

Hi,

I really do think it depends on your consultant as to how long you are on the injections.

I know how your feel about being pushed to the side, when the pain came back my doctor asked for a urgent appointment ( luckily I have a doctor understands ) and it came through within a couple of weeks which was excellent! Unfortunately they then forgot about me as the consultant I was seeing went on study leave... I kept contacting them and was told that I would get an appointment for a lap within 6 months!!

I was admitted to hospital quite a few times where the pain was so bad and I was always kept overnight and sent home with painkillers, once they told me it was not gynae and I may have a bowel problem?

Eventually i went privately and was operated on within 2 weeks including a consultation, they found my ovary attached to my pelvis and my bowel attached on top. There were also lots of cysts so no wonder I was in so much pain...

Just hang in there and keep asking about options, different things can help different people and we have to ask

Good luck x

[Anvi]

Hi Dawn, would you mind telling me how much it did cost you to have the operation in private? I have the same problem as you bowels bladder stuck and adhesions as well.Thanks

[DawnK in reply to Anvi]

Hi Anvil, I am very lucky that my work sorted out my health insurance but the bill was about £3,000!! A consultation alone is £170 and I did have to pay this to get a consultation with my nhs doctor in 2009 ( 12 weeks wait on nhs or next day private! When you are in pain sometimes you just have to pay! ).

I found my private consultant via endo uk and hr does nhs work as well so if you pay to see a consultant he may be able to do the op on nhs? Good luck x

[Anvi in reply to DawnK]

Hi Dawn, did u say that if you go on private consultation with the doctor, he will do the op in nhs hos?

[DawnK in reply to Anvi]

I saw him privately and had my op done privately but before I found out about my healthcare and whether they would cover it I spoke to his PA who said that if I have a consultation he can add me to his nhs list.

I also did this in 2009, to see my consultant it was a 12 week wait or see him the next day privately. I paid the money and had my op done on the nhs

Hope this helps x