Severe Endo Pain and Working

Tikki · 12-03-2008, 05:18 PM

Ok, this has really been worrying me. Since I've been diagnosed. Well even before that, I missed alot of work, and they put alot of pressure on me, I eventually quit, and now I am unemployed (have been since 2 weeks after my Lap). I've had several interviews, and also several complications with the endo (includng some I am going through now). I've been on Seasonique (which i never lasted more than 3 months on any pill) for about 2 months, before my issues came up. Anyways, my major concern is when I get a new job. My Endo is very debilitating during the week preceeding my period, and during---the rest of the month, well, I can live with that. Are there laws protecting me? or are they going to laugh and fire me if suddenly they hire me and i have an "episode." I am not sure about how to deal with this.

Oh, and my line of work is Graphic Design. So it is mostly seated, but sometimes can be long hours, if not several days (depending on where I get a job). *sigh* this whole work thing is scary ;_;

DiamondInTheRough · 12-03-2008, 06:33 PM

Are you saying that the lap didn't bring on any relief from the endo? How long ago was it done? What medications did your doctor have you try afterwards to keep the endo from coming back? What complications are you going through now?

Sorry for all the questions, I'm in the process of getting a diagnosis myself and curious to learn as much as I can.

ETA: I just read another post of yours and I see you had the lap done in September. Wow, I'm really sorry they couldn't get it all! What a shame to have to go through it and not get the relief you were so desperate for. You mentioned it was on/around other organs. Which other organs? Do they think you have the 'colo-rectal' presentation? Would a Gastroenterologist be a better fit to go back in and try to remove the endo from the other organs? I think this would help relieve a lot of your pain, but it's a much more invasive surgery then a lap I would imagine.

As far as doctors go, depending on where you live, there are programs you can apply for that would protect you during time you needed to take off for legitimate medical reasons. You would need a good & caring doctor with sympathy for your situation to make the process a lot smoother! I am guessing you live in the states, so I'll let one of the American sisters give you more detailed info.

Tikki · 12-04-2008, 07:25 PM

I dont think I had a " 'colo-rectal' presentation "..but my doctor was very vague on telling me ANYTHING about ANYTHING....especially about my surgery. Its hard ot pry thigns from here, and im trying to switch back to my other GYN I had before her (I dont know how i got stuckw ith her in the first place!) I do know there was a spot REALLy close to my appendix, which is actually how I got pre-diagnosed with Endo, since in one year I was sent for a CT scan 2 (almost three but I stopped them) times for appendicitis. She said there weren't many spots she could see, but told me it can still be very painful for me.

I saw my old GYN today (since the Endo lady i see is away) and he thinks the 8 days of pain I am having (tomorrow will be 9) might be an isolated event, and not happen every time I have my AF--since I wasent supposed to have my AF till January. He did Pop the Lupron question, but at 25 yrs old, I dont know if I can do that to myself. I guess I need to hear more experiences.

As for working with the Endo, what I feared the most, is that I am a prime candidate for a job I REALLY want and could only have dreamed of in this economy. Its between me and one other person, and I am just waiting on the decision. I am going on vacation the last two weeks in December, so that means I should be starting to work in January, which is when my first AF on seasonique (Well, frist REAL one) is supposed to start. Its mentally driving me crazy, because how bad will that be fore me to be like," ok, Ive been here for 2 days and now i have to go be crippled for a few days...." Maybe I am over thinking it. Who knows. I think I will ask my GYN (the Endo lady) if I can skip the period, since I had this 8 days of hell, till March. Hm. Great, that means it would land on my birthday, oh well, small price to pay!

DiamondInTheRough · 12-05-2008, 01:23 AM

Well, if it makes you feel better, I had my gallbladder removed the day after my 30th birthday this summer...heh.

Hopefully it's just over-thinking, and it won't be as bad as you fear.

I hope you can get in to see your previous doctor.

So the CT scan showed some endo on your appendix? That's interesting. My GYN has me on the pill for 3 months back to back. We'll see if that helps my pain, but I'm starting to worry about what my period will be like at the end of it all...

Tikki · 12-05-2008, 11:12 AM

Actually, they saw a 9mm node...I am not sure if it was the endo, but they saw that I had an arcuate uterus. Somehow that all lead to the pains i felt every time I had my period, which was 2-3 times a year, where I would pass out, or throw up...and THAT lead to the "you probably have Endo discussion---at least thats the abridged version :/

OliviaLeigh · 12-05-2008, 02:37 PM

Some of my Endo growth was also not removed b/c it would damage my uterus and I need that for babies

I'm currently doing Lupron.

As for work, I'm on intermittent FMLA. You can contact your HR dept about it. I usually get 4-5 days/month covered. Your dr will fill out all the appropriate paperwork.

You need to request a copy of your file from your GYN's office. That should include any surgery notes, photos, etc. You need to know what is really going on.

Feathers · 12-07-2008, 11:22 PM

Hi there,

Your post really struck a note with me- Right down to being a Graphic Designer.

The pain I have now after my Lap surgery is worse than before. My doctor has been incrediably vague about it too. I am very lucky I have a incredibly understanding boss. I find sitting at a computer all day very very painfull when I'm cramping- Or it feels more like a horrible squeezing ache with intermitted stabbing pains that can have me close to vomiting.
Not a very productive situation. I find wandering aimlessly at a slow walk keeps me the most comfortable. Makes me look a little odd in the office though!
I'm guessing this isn't the ideal outcome of the surgery but I'm hopeing it will get better. It was only 2 months ago, I was off work for over a week, looked like I had been shot 4 times in the stomache and had horribly referred pain and wind pain. I also can't take strong poain killers as I have a very low blood pressure and heart rate and have stopped breathing on Morphine several times. Not much fun..
Your situation sounds a lot more complicated than mine though and I wish you the best of luck.
I also find sitting on a fitball helps the with the pain as well as hot packs and rubbing my tummy with melaluca gel. A good bottle of scotch helps as well!

Tikki · 12-08-2008, 12:05 PM

Funny, my neighbor kept telling me to get the bottle of scotch...

Well the situation , paticularly this time, was a bit extreme. I've never felt anything like it. But luckily the doctor finally gave me some meds that mellowed me out...although made me very sleepy :/ . Its nice to be able to do stuff again. I think the first thing I did was all the dishes...since my hsband decided not to help much even though i couldnt move (grrrrr--he can be selfish some times). Also, it seems to be slowing down. I hope this is sign that AF is done with her visit. If it is..I think we should celebrate. Its been 14 days so far!

OliviaLeigh · 12-08-2008, 04:02 PM

Ok, if this was a first time, I can see not looking into other options. I've arrived at Lupron b/c I was in pain for so long and bleeding non stop for 4 months that my body was not functioning properly. I was constantly running a fever over 100, had high blood pressure and high pulse rate. I pushed myself way too hard. I've realized that I need to take care of myself and so here I am today on Lupron.

I hope you can get your surgical notes soon. I think that will help you understand what is going on and your next step. Don't let the Endo grow and spread - that can cause problems later on.

froubaby · 12-08-2008, 07:49 PM

Tikki, sorry to hear you're going through such troubles. Regarding work, have you ever thought of creating your own home business for design? Believe me, there are a lot of internet marketing companies that will work with graphics people anywhere. Shoot me a PM or IM me as I may be able to help you out in getting into something home based. I work for an internet marketing company as a project manager and I work from home. You could also look to changing careers for a bit and do telephone work from home as well. Sometimes it's better to get anything going to have the cash flowing. Working from home enables me to spend the day on the couch when I can't sit in my chair from the pain. Gotta love laptops. Considering you do graphics, you could also have a desktop set up next to your couch as well, having your monitor on your coffee table or on a table next to the couch and something to rest the keyboard/mouse on.

You would be surprised though. Get your portfolio together and you may even have luck with finding a company willing to hire you working at home too. Definitely send me a message though. A friend of mine does graphics from home too and now he's starting to incorporate some heavier web design into his mix.

Good luck!

Tikki · 12-09-2008, 12:26 PM

I do some freelance from home. I'd just hate to have to do all my own taxes. But actually, I was hoping to get a few years of experience, then start working from home (and having babies)---that was my ultimate plan. I am on UnEmployment now, so I do have some cash which is helping us. But of course, thats not going to last forever. 15th post, lets see if I can post my website: geneticallydesigned (dot) com

froubaby · 01-12-2009, 11:56 PM

Tikki... any update on your search and how things are going?

Tikki · 01-13-2009, 01:33 PM

Sorry...my husband stole me away for two weeks to florida for a vacation at my parents house. It was a nice break, although, I forgot to take the Pill ONE DAY, and it brought on the severe period again (btw, once is tarted taking the super pain meds-it pretty much went down to spotting and the pain went away--I think it was 3-4 weeks). This one only lasted about a week, so that was only half my vacation. We went to Disney, and I walked around like the Hunch Back (according to my husband)--we ended up leaving early....codine + disney...pretty exausting.
But thank goodness the second week was MUCH better, things finally cleared up a bit and i could enjoy the rest. I should be having my AF according to the pack, but I cheated, I figured 2 periods in a month was enough without a third one, so I skipped two weeks and started my new pack (seasonique). I am getting a little worried, I am having trouble breathing deep, and I'll call my Dr today about it.

Oh, and before i left, or should I say, the day I left i spoke with my female OBGYN who performed the surgery. I asked her why some of it couldnt be removed. She said it was too close to my bladder and I had some wrapped around my urethra(sp?)... so it wasent on my uterus (thank goodness), and she said the ones on my badder and etc. were VERY small, and should be controlled by BC for now. She also said she didnt think I would not handle Lupron well, but was thinking about alternate BC is these next three months dont pan out well.

froubaby · 01-13-2009, 02:54 PM

That was nice of your husband to get you away for a bit. I love going to Disney as it makes you forget about everything for the time you're there.

How are your searches with work coming along?

Tikki · 01-14-2009, 01:22 PM

Fruitless... Im not sure i said anything, but the one place, that seemed like ad ream job, turned me down (it was narrowed to two people me and one other, and i missed it

). I've decided to not stress about it too much just yet, and focus on myself for a little while while i can. I am checking weekly, but jobs are still scarce. We are doing 'ok' so we should be fine for a little while. I was actually able to sell a very precious item on ebay which paid for our vacation

.

As for endo, I've beenc ramping every day now :/ --but I guess it would be more so like 'regular peoples cramps' then the immense ENDO CRAMPS...but no period. *sigh* Life goes on.