Endometriosis UK
34,132 members30,519 posts

getting nowhere fast

I am getting very frutsrated at the moment, i have still not got a new date for the surgery that was cancelled twice, after three weeks of being off with a flare up (and some mildly hilarious medication side effects) i am back in work but really struggling as my job is mildly physical. I am sat pretending i am fine so my boss and i dont have another discussion on if i am sure i can do this.

i have sent a letter of complaint to the NHS expressing all this, i no longer get sick pay as i have exhausted my company sick pay, does anyone know any way or any benefit i can get to help me at this moment? i will have to take unpaid time off when my surgery does happen as well which is stressing me out big time!!!!

my gp is having problems treating my pain as he is working blind, he doesnt know for sure without the surgery where or what the pain is, but this has led to me really starting to worry to worry what if it is not endo? and if its not what is it? sigmoidoscopy showed nothing so its not my bowels!


for listening

9 Replies

Hi Samantha, have you tried contacting your consultant or their personal secretary? If you ring up and explain your story and that you are really suffering, they may be able to work with the appointments team to secure you a date. If you have been cancelled twice, then that should move you up the priority list. At least if you have a date, you have a target to work to.. Good luck!


We are now in a new financial year Samantha, as of 6th april, so exhausting your company's sick pay was for last financial year not this new one. You should be getting 6months statutory sick pay from your employer for each new financial year.

If your employer is really getting fed up as you are, then perhaps suggest that if your company could fund a private consultation then you'd be willing to accept that rather than continue waiting for the NHS to get their act together.

The sooner you are seen by a surgeon and have a lap the better your chances for reducing the pain and being a much more productive employee.

I'm sure they'd give serious thought to funding the cost of a private consultation versus you taking indefinite amounts of sick leave.


Thanks my employers work on a rolling sick thing so I have to be well for ages to get it. As you know when I get flare ups it ruins it all. I am prone to sinus infections too and I have some sick for that from 2012 as well. Luckily I am seeing the ent Friday. The problem is with the anesthestist, they decided that he needed to see me before anything happens so waiting on them then going on surgical list again.

They sent me to an external occ health officer who said my condition was manageable. I felt like saying I'll punch you in the womb and you tell me how managable it is!! My employers more are thinkinh about changing my role so my absence is less conspicuous which I'd hate I love my job :-(


I had a similar situation the other year when i had two operations, lots of flare ups, and only 3 months sick pay. I ended up reducing my hours to 24 pw (then upto 30 for a while before going back to 40) so that at some times I would work more, or less hours, depending on how I was feeling. One of my friends who has long term health problems has negotiated slightly changing her role so that it's less physical and some of it can be done from home when she is having a bad week and on the strong stuff!

An illness or long term condition can be treated as a disability that means employers have to make reasonable adjustments to allow you to continue working.

Good luck honey - it's a nightmare with the added hassle of work/money on top of health.




I understand the frustration of waiting, My op has been moved up to now 4 times and I got in touch with PALs who got in touch with the management team at the hospital. I just got a phone call and a letter is being sent out my new lap date is now a week Thursday and to say the least I am bricking it. My nerves have gone already (can't stop going toilet, if you know what I mean and sorry to be so blunt) but want op out of the way because the waiting is a killer. I know you have wrote letter of complaint but also go to your GP and get them to write to the hospital expressing your concerns and also phone the management team at your hospital, mine were very helpful and nice with it. I now have not long to wait instead of middle of July. O I am scarrrrrrrred. Keep us updated with your what happens, there are things that can be done other than just waiting. Its our lives at the end of the day that are on hold and we need to try and live them without op dates hanging over us for long periods of time. X


I used the nhs advocacy service as i am in wales and we dont have PALS (wish we did though) its just horrible lbving on meds and relying on the operation date as our goal and focus to have it pulled away. Today i made a list of things i am going to do as soon as i am well as my goals and i think i will call the anethetist till they block my number, i am going to be more proactive.

I am also waiting for the gp to call me back as my pain has gotten worse on one side and that worries me!!


Yes its the worst knowing that you are waiting just like everyone else then it has been moved to a later date. I think its a case of she who shouts loudest unfortunately. But things can be done and up to now, don't hold my breath, it has worked for me as regards to date change. I think the more people on your side the better in your case, ie. GP, advocacy etc and you just may get a surprise. X


You could apply for Employment and Support Allowance, a government benefit. I applied last year on endo and mental health grounds. I didn't satisfy the medical, but a few weeks after finding that out they overturned the decision, so it is possible for someone with endo to meet the criteria x


i called the surgical secretary again this morning and she is going to contact the anesthetics and chase them up, had to go back to my gp last night as it was getting too bad to move again. He is very sympathetic and i think he felt that if he could he would have done the surgery there for me :)

We had a conversation about what worries me regarding the results, i am worried its not going to show anything and i am back to square one, he said it is a worry and it will leave us with little else it could be. he also said my last ultra sound the technician has made a note that i have a massively tiltied uterus and that it is rare, does anyone else have this/ know what it means?


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