Anyone else?

[rach3110]

Feeling like not many people seem to understand the effects endo has....went back to work yesterday following the laparoscopy I had last Monday, and everyone seems to now think that is me miraculously cured now that they have found the cause of my pain etc....HA! I wish. Apparently I should now be feeling 100% and they don't understand that this is going to affect me for the rest of my life. Anyone else??

[gemp54]

I know exactly what you mean! I've only had my diagnostic lap, no treatment yet but people seem to think I should be back to normal within 24 hours. Someone actually said "its not a big op to recover from is it, its only diagnostic". Um yeah...they still had to cut holes in me though and pump me full of gas. Its not like I had an xray or something!? They also seem to be taking the view of 'oh that's good they know what it is. They can just cut it out and get rid of it now cant they?" Well yeah but that's no guarantee to ease my pain or that it wont come back or get worse! Sooo annoying! Xx

[rach3110 in reply to gemp54]

Exactly! I work in a vets so they do operations every day on animals, who have a much quicker recovery time than humans cause they generally handle life better than us 😁 lol, but they were exactly the same, "it's only little incisions and a camera inserted" eh no its not just that and you're lucky I came back after just a week! Xx

[Hidden]

Yep, and sadly when I was first diagnosed I thought I should have been better off as well.

Because.... now we have a name for it, what do we do from here??? Oh......there isn't a cure? You can't remove it all? What do you mean that I 'might' be cured if I go and get pregnant or go through menopause for the rest of my young life?!!! I don't want either of those!! You can only give me narcotics that make me so I can't work if I take them? Are you SURE there isn't a cure? You just told me that the pain will go away if I have a hysterectomy, how does that help when my pain is near my ovaries?!!! I don't want to suffer any more.

[rach3110 in reply to Hidden]

it has such a huge effect on our lives yet for people who haven't experienced it we are complete wimps that are putting it all on. We have to deal with the fact that we are going to be in pain most days and on medication for pretty much the rest of our live, have to go through surgery every so often yet it's not a big deal x

[Hidden in reply to rach3110]

I get Family Medical Leave, and needed to use it for my hysterectomy and more endo removal 3 months ago. The FMLA people said that even though I had a complete hyster (uterus and cervix) their nurse (who has never seen me before) said that I could go back in 4 weeks because I am a secretary. I called them back saying that I am an Emergency Room secretary and spend nearly 70% of my shift MOVING around 26 rooms all 8 hrs of the day, and that my doctor who is providing my care for me says I am to be off 6 weeks so that I can heal properly. Nope, apparently just like insurance companies, FMLA seems to know what's best for me instead of my doctor. Since I didn't have vacation time saved up (been using sick days like they are going out of style from the endo pain), I had to go back when the fmla people said. And the best part.....My boss had the NERVE to tell me that she asked the FMLA people specifically if I could use the computer on wheels ( I had a 10 pound weight limit). I told her I had a paper from my dr. saying I couldn't. She said well I asked and the FMLA people said you could (LIES!!!!).My boss said to do it anyways to try and see if it would hurt me. So I tried once, had instant pain and said, I am refusing to do anything else that can cause me damage to my body that can cause me healing issues.

People at work are upset because I call off more often then not. And my boss wanted to know why the hysterectomy hasn't helped my "pain". grrrrr

[brokenxx]

There are good waves of people being fixed now though so try to keep ur chins up there may well be a cure soon if we well maybe me fist lap soon...but its crazy hate being told do something fun you will forget and feel better...pretty sure id pass out from pain if I tried to go on a rollercoaster or ride a horse..not be magicly better I wish..feel like saying should I stab u here twist it about see if fun makes u feel better, because that's what I feel likes happening to me a lot of the time..xx

[brokenxx]

Look at Nancy's Nook Endometriosis discussion and education on fb xx

[Amber83]

Completely agree, people don't understand it at all so I end up feeling like they think I'm a hypercondriac. Even my doctor despite having diagnosis doesn't seem to care. It makes me feel alone and hopeless. I think we end up in a horrible situation where the pain, fatigue and the rest of the symptoms make us feel we want to slump in a ball and cry but we can't as life still has to go on somehow, so we push through everyday and because we do, people think "it's not that bad" and were fine when we're really not. I really feel for all you girls out there but all we can do is keep persisting and try to concentrate on being positive xxxxx

[Noguat]

Haha, yep!

Despite me being very open with everyone in the office and telling them all everything that's been going on regarding infertility, large cysts (which required open surgery) and endo, one woman, very cheerfully, like she knew everything, said "I know what'll happen, you'll fall pregnant all of a sudden when you're least expecting it" honestly, I nearly swung for her.

I just said I doubt it and reminded her that I'm still having treatment and that there's no chance right now because I'm on Zoladex. Allwith a smile, obviously, because we don't want to upset or worry anyone right?... xx

[slaccie98]

Nobody understands what we go thro because we look "normal " on the outside. I have people say "well you got 1 child so you'll be able to have another" or "I guess it's like very bad period pains/labour pains" ha if only. I'm now at a point where I don't care if I hurt their feelings when I tell them exactly what it is and like. Im very very graphic about my symptoms they usually turn green or pale. Then I just smile sweetly and walk/hobble away.

I'm thinking of taking a load of info off the Web so they can read it.

[Mabes]

I find a lot of people are generally ignorant about invisible illnesses and/or conditions that cannot be cured. People are so used to the idea that one goes to the doctor and they immediately diagnose what's wrong, prescribe treatment or surgery that fixes the problem and the person's cured. Going by the amount of chronic illnesses there are, it seems that situation is more the minority!

Growing up I think we are raised with certain notions about doctors and how this illness stuff works - people as adults seem to continue to subscribe to those ideas. For example: that if you are 'really sick' you'll 'look sick'... Also people understand visible tumours but a tumour inside you is less well believed etc. It seems to be worse in people who've never been seriously unwell or who have had an operation which did actually fix them - they then start blanket applying their own experience to everyone else.

One thing that might be helpful is to pass around some endometriosis educational pamphlets or printed off material - that highlights this is long term, not just always at period/ovulation time, and that it affects more than just bleeding/cramping/fertility but fatigue, mood etc also. Typically it is easier to pass such material along on awareness days, but you could say that seeing as you have just had an operation and are aware that people are having difficulty understanding your situation, you thought your colleagues might benefit from the information... Then it's up to them if they read it.

[stevieflp]

Hi - you went back to work pretty quickly.

The thing with a laparoscopy is that it is just the name of the type of operation (keyhole) with laparotomy being open surgery - so really it also all depends upon what is actually done during the laparoscopy - it could be investigatory to diagnose endo or it could be to carry out radical surgery. It is often just the first step to diagnosis meaning that a further op / treatment is then discussed and decided upon.

Because it is keyhole with small incisions it heals quite quickly but it can take a lot longer to heal on the inside. Anaesthetic can take a while to get completely out of your system.

I have found that surgeons are often overly optimistic about recovery times which doesn't help - recovery to them can mean you can make a cup of tea, cook a meal and do the washing and ironing i.e normal daily chores - but if you have a strenuous job or a tiring commute etc then recovery should be given a bit longer. They always give you an initial sign off from work (2 weeks generally) and then expect you to go to you GP if you need further time.

My first lap took 6 weeks as I was so swollen and bruised and sore and yet this was just an investigation with a little bit of work done.

I had Total Radical Excision which was an enormous op lasting 8 hours and recovery was about 8 weeks.

Going back as soon as you have done is quite quick, although I know some ladies do recover that quick but it is individual from operation to operation.

All best wishes for your recovery x