Endometriosis diagnosis and ttc...do I tell employers?

[Anonymous]

I have been working for two families in a nanny-share (two babies under 2) for 4 months now, and have already used 3 sick days, and will need 7 out of 10 vacation days over the summer. In addition, there have been a couple of instances where I came in late or took one of my charges with me to doctor appointments. This all started about a month after I took this job. I have not had a clear diagnosis for my issues (chronic pain, fevers, horrendous periods) so have not given any explanation to my employers. About a month ago I was treated for a condition and thought that at last this was the end of it. I told my bosses and and we let out a sigh of relief that we could all get back on track. Then, over the weekend I experienced so much pain all of a sudden that I lost consciousness and was rushed to the hospital. I was fanally diagnosed with stage 4 endometriosis. The pain subsided over then next day and I came back to work on Monday. The pain is now somewhat under control with medication, although it's a temporary bandaid. I am devastated and will need additional doctor appointments, a minor(ish) one-day surgery fairly soon, and to top it all off- will need to seriously start thinking about becoming pregnant sooner rather than later. Endometriosis will cause more and more fertility issues for me the longer I wait.

My question is- what or how much do I tell my employers about my condition? I am terrified of being let go because they can no longer accommodate extra days off once I use up what I have. I have a good relationship with them but we aren't necessarily close since I only recently starting working for them. Is it reasonable for me to offer to take additional days or even half days off without pay so that I can start getting the disease under control? In the long run, days off for treatment now would likely mean fewer sick days in the future. Would it be horribly inappropriate for me to open up to them that I may ttc within the next year? I feel like they deserve to know what I have going on, but also don't want to overwhelm them or cause them stress over my situation. I am young (22) so I know they probably liked the idea that I wouldn't be leaving them for marriage or babies any time soon. I liked that idea, too. And, I would not want to lose my job if I become pregnant. I know that is a heavily debated subject on this forum. I really have no idea how to approach this. I feel like it's just been one thing after another in the short 4.5 months that I've been with them and they have been so great. I know they really like me but I don't know when that just isn't worth it anymore. Any advice?

[Anonymous]

Your writing style is so familiar. The stories super long always with TMI. What state are in you in? Call your Dept of Labor to find out what your rights are.

[Anonymous]

I think you need to re-think your summer vacation plans. Maybe you can't go on a 7-day vacation this summer after all.

[Anonymous]

Anonymous wrote:I think you need to re-think your summer vacation plans. Maybe you can't go on a 7-day vacation this summer after all.

Pretty much exactly this. If you know you're going to need tine off that go over the days you have left, you need to cancel the summer trip. Really, it is the mature thing to do.

From your post it sounds like you aren't married? Are you in a serious long term relationship that your bosses know about? If they don't, I'd hold off telling them you are trying to get pregnant. I think you need to tell them just enough so they understand what you are going through.

As for working without pay...seriously bad idea. Even though you seem nice, they would be putting themselves in a delicate situation where you could claim they didn't pay you for hours worked.

[Anonymous]

You need to plan now on losing your job. Sad, but true.

I would cancel your summer vacation and make sure you always give them as much notice of time off for appts. as possible. I would also try to find a Dr. with hours that allow you to be seen outside of your work hours if at all possible. Many people (and especially in a share situation) would prefer to give full days off than 2-4 hours here and there- so keep that I mind especially if their jobs aren't very flexible or they don't have good back up options.

I wouldn't say a word about TTC- I also wouldn't tell them you're pregnant until you're at least 3mos along.

You might also look into what options you have for disability insurance- in your case it may be worth the cost!

Save as much money as you can- plan for a min. of 3-6mos of living expenses, especially if you TTC.

Are you married? If not- I would think long and hard about rushing the baby process. Can you freeze eggs now? Would you and your baby be better off if you waited until you were older, more financially stable and married using a surrogate if you can't carry then? I totally understand the fear- I have a genetic condition and I worry if I wait too long my eggs will be in worse shape/more likely to pass it on.... But I'm not in the right place to bring a baby into the world right now- so I focus on getting there instead.

I think an honest conversation w/ bosses that you were diagnosed w/ a condition that will require more time off, presented with a plan on how to minimize the inconvenience to them, canceling your trip so you have the extra time off (or asking how they feel about and how much unpaid leave they feel they can accommodate) and keeping all talk of pregnancy out of the equation is the best way to go.

[Anonymous]

Hopefully my perspective will be helpful since I also have stage IV endo and am an MB w/a 9 month old.

First of all, I'm really sorry about your diagnosis. Endometriosis is awful. A few questions, though - did you have a lap performed? There is no way that they can effectively diagnosis you with endometriosis, much less your stage, without a laparoscopy. They can *guess*, and make an educated guess, even, but they can't do a formal diagnosis.

If you start doing heavy research, you will find that the VAST majority of ob/gyn's, even really good ones, know essentially nothing about endometriosis. This would explain your diagnosis without surgery if that is what happened- it must have been because you would not have been back at work on Monday if you had surgery.

I would not tell your employer that you were diagnosed with stage IV endometriosis if you have not yet had surgery. I have been shocked to find (since my diagnosis) that MANY more women have endometriosis than I had realized. You are going to look like an idiot at best, and liar at worst, if you tell them that you were diagnosed and it is clear that you did not have surgery and they have enough knowledge about the disease to know that your diagnosis was not real.

Another thing, endometriosis is highly treatable with surgery FROM A TRUE EXPERT. It is called excision surgery and there are only about 20 real excision experts in the country. Most do not accept insurance and none are in the DC area. If I were you, I would try to find one of these doctors that do accept insurance (you will have to travel for it) and make an appointment for an exploratory laparoscopy. They will be able to go inside you, diagnose you, and take out all the endo, all at once. Your quality of life will dramatically improve and your fertility will also improve.

I am not sure if he still takes insurance but I would highly recommend starting with Dr. Patrick Yeung- I used him with excellent results and now have a 9 month old when all the DC OB's told me that my chances of getting pregnant naturally were less than 3%. He is located in St. Louis but did take my insurance, which is huge.

This said, you cannot take your summer vacation and you need to be open and honest with your employers WHILE giving them a plan of attack to ensure that you do not keep having to take random days off. Even with all the sympathy I have for women with endometriosis, I would not be able to continue to employ you with tons of days off because I'd put my own job in jeopardy.

I would also HIGHLY recommend waiting to TTC until you are married. If you get the excision done by an expert, you will be ok on the fertility end if you wait a few years (not many, but a few). You 100% need to have your finances in order and a stable life situation before you have that baby.

[Anonymous]

Oh and I just re-read and saw you are probably having the lap soon - TRUST ME, do NOT get it done here in the DC area with someone who is not an expert. It will be a huge waste of time, money, and pain! You will have to have the surgery repeated with someone better and the first one will be all for naught. Here are some lists of doctors:

http://obgyn.slu.edu/index.php?page=center-for-endometriosis - this was my doctor

http://www.debbieseymour.com/angryuterus/doctors.html - here are some great doctors but I don't know if they take insurance

http://www.endo-resolved.com/specialist.html - another list

good luck!!

[Anonymous]

Anonymous wrote:Hopefully my perspective will be helpful since I also have stage IV endo and am an MB w/a 9 month old.

First of all, I'm really sorry about your diagnosis. Endometriosis is awful. A few questions, though - did you have a lap performed? There is no way that they can effectively diagnosis you with endometriosis, much less your stage, without a laparoscopy. They can *guess*, and make an educated guess, even, but they can't do a formal diagnosis.

If you start doing heavy research, you will find that the VAST majority of ob/gyn's, even really good ones, know essentially nothing about endometriosis. This would explain your diagnosis without surgery if that is what happened- it must have been because you would not have been back at work on Monday if you had surgery.

I would not tell your employer that you were diagnosed with stage IV endometriosis if you have not yet had surgery. I have been shocked to find (since my diagnosis) that MANY more women have endometriosis than I had realized. You are going to look like an idiot at best, and liar at worst, if you tell them that you were diagnosed and it is clear that you did not have surgery and they have enough knowledge about the disease to know that your diagnosis was not real.

Another thing, endometriosis is highly treatable with surgery FROM A TRUE EXPERT. It is called excision surgery and there are only about 20 real excision experts in the country. Most do not accept insurance and none are in the DC area. If I were you, I would try to find one of these doctors that do accept insurance (you will have to travel for it) and make an appointment for an exploratory laparoscopy. They will be able to go inside you, diagnose you, and take out all the endo, all at once. Your quality of life will dramatically improve and your fertility will also improve.

I am not sure if he still takes insurance but I would highly recommend starting with Dr. Patrick Yeung- I used him with excellent results and now have a 9 month old when all the DC OB's told me that my chances of getting pregnant naturally were less than 3%. He is located in St. Louis but did take my insurance, which is huge.

This said, you cannot take your summer vacation and you need to be open and honest with your employers WHILE giving them a plan of attack to ensure that you do not keep having to take random days off. Even with all the sympathy I have for women with endometriosis, I would not be able to continue to employ you with tons of days off because I'd put my own job in jeopardy.

I would also HIGHLY recommend waiting to TTC until you are married. If you get the excision done by an expert, you will be ok on the fertility end if you wait a few years (not many, but a few). You 100% need to have your finances in order and a stable life situation before you have that baby.

Agree that a definitive diagnosis is only made with surgery, but otherwise this post is full of drama and exaggeration. Endometriosis is very common. You can find someone who can treat it locally and who will take your insurance. PP drank Koolaid from a concierge gynecologist, though I am glad that she got pregnant without ART. As far as TTC, endometriosis decreases fecundity for both natural and ART cycles. Your best chances are when you're young, and as close as possible to your FIRST excision surgery. Yes, this should be weighed against social and economic factors.

OP, take a deep breath. You haven't had your diagnostic laparoscopy yet. Despite symptoms, you may not have severe disease in terms of the actual lesions. In that case, you could worry about controlling the pain now, and about conceiving when you're ready. Good luck!

[Anonymous]

9:37 - Honestly, you don't know what you are talking about. I'm not being dramatic or exaggerating. Yes, it is very possible to find someone to treat early stages of endometriosis locally, but stage IV is an absolute nightmare. I lived for years in debilitating, chronic pain and having the PROPER excision surgery made a huge difference in my quality of life (and of course, my ability to conceive). If I had listened to the many people who told me it didn't matter who I saw for surgery, doctors included, I would not be where I am today professionally, personally, etc.

[Anonymous]

I would leave out getting pregnant.

[Anonymous]

Don't TTC until you are married.