Hi everyone, I am new here and I am 25 this year. If you have a moment, I would appreciate your advice on the situation I am going through at the moment.
I am in NYC in the United States but I guess there is a lot you guys can relate to even though the health care systems are different.
My pain started in August this year but it has been constant since its start (before that my life is literally pain-free). I noticed I have been feeling nauseous in April this year and discomfort during menstruation has kept getting worse since April as well. I have had ultrasound, CT scans, and colonoscopy, all came back clear.
I have a diagnostic lap scheduled for Nov 25th (haven't discussed with the doctor what she will do, will have a meeting with her on Nov 13th). For this surgery, I only need to pay $100 since it is covered by my insurance.
However, I feel like I couldn't trust her 100% so I looked up online and found a top endo specialist in nyc but he is out-of-network (which means I will pay between $3000 - $4000) for the procedure since my insurance does not fully cover his service. This specialist uses excision and has unbelievably high recommendation here. He will treat you right at your first lap. He will enlist a bowel surgeon if he thinks it is necessary for the first lap. Given I feel I have bowel issues this idea really sells to me.
I am in a bind. What should I do? I heard that your first lap is important and I don't want to go through multiple laps. However, that is a lot of extra money to pay and I am still a student.
I appreciate your advice and I hope you will feel better soon! x
Hi, it's really best if at all possible to have even a diagnostic lap with a true endo specialist, I understand how difficult it must be for you. But think that potentially it could save you a lot of heartache, suffering and possibly even money in the long run. Some general gynaecologists seem unable to even perform an accurate diagnostic lap, sadly many women are incorrectly told they don't have endo when they actually do! These articles explain more - it really does take skill and knowledge.
The healthcare system in the US is very different to here. I suggest you join EndoMetropolis group on Facebook, it's an international group and there are many members in the US. They may be able help you more regarding your insurance, coverage and what worked for them. It would be a good idea to get feedback as well from other women, just to make sure the guy you are considering seeing really IS a good specialist. Good Luck!
Thank you so much Arcadia. Yes I will certainly consider joining that facebook. I really appreciate that you take the time and efforts to help me! Can I follow-up with one question? I read the $100 gyn's profile and it seems like she has extensive training in advanced lap - complex endometriosis is also listed as one of her speciality. Does that make her stand out from other gyns? Does this give her some credentials in treating endometriosis? Or are information as such listed for all general gyns? Thanks in advance!!
I tend to agree with Arcadia. What you could do is make an appointment with the top endo surgeon and see how you feel after meeting him.
In the meantime, try to do all you can to support your body and learn about diet and lifestyle changes that you could implement. This might result in a reduction of symptoms. If it doesn't, at the very least it will prepare your body for surgery, recovery and trying to ensure endo does not return following surgery.
Hello, that does sound quite good, but it can be difficult to tell, as some consultants do tend to make quite bold claims - that can be misleading at times! I would suggest if you do go for a diagnostic lap with her, confirm if that is all she plans to do, and possibly ask her (for future) about how she does normally treat endo whether she can do excision = cut it out or does she burn it, that may give an indication of her skills. It's really best to avoid burning endo as not it only is it unlikely to give long term relief - it can also create new problems at times. Make sure that you ask her to take lots of clear / close up colour photos during the lap, then you could always get a second opinion with them, and there are also experts on endometropolis who are good at interpreting lap photos. Again it would probably be a good idea to join and ask on there if anyone has seen her, as personal feedback may be useful and give you a better idea - there are some non specialists doing a better job than others out there!
Thank you Arcadia, I appreciate your detailed help !
At this point, I have decided not to continue the lap with her and go ahead and book with the true specialist (money is still my worry but what can I do...). Do you know old endo will come back after excision? Can there be "new endo sites" growing out of previously healthy tissues later down the road?
hi, that does sound preferable. The leading experts in endo believe that if all endo is recognised, and thoroughly excised, for the majority of women it does not recur. Endopaedia is an excellent website which includes a lot of Dr David Redwine's work. Dr Redwine found from his experience, that most women will have the majority of endo they are going to have by about your age, so it would be less likely that you would develop more.
It's important even though you will be seeing a specialist still to take control of your care, be informed, and ask them lots of questions! These are a good start - endopaedia.info/treatment10...
I live in Florida and also had a diagnostic lap back in August of this year. I personally made the judgment call for myself that since I felt extremely comfortable with the new obgyn I chose I would have him perform my first procedure. That to me sounds like a TON of money and if the obgyn you chose has fairly extensive training I'd opt for that first. But that's just me. During my procedure he did find some endometriosis that he addressed but it was pretty minimal (though he was clear that a tiny amount visible could potentially cause a lot of pain) Other than that the only other issue were adhesions around the colon, which he also took care of. I have also since then started song an acupuncturist to make sure the endo "stays away".... this month is the first month in so many years I'm legitimately pain free, so for me personally I'm glad I didn't spend thousands of dollars extra on an endo specialist right away. That being said, if this hadn't worked I wouldn't hesitate on it!
Thanks so much and I am so glad that you are feeling better. I will definitely take what you said into consideration and I got some more time to think over this...
Keep your recovery going and we all need our health back !
Hi, did you end up going to a specialist? I'm in RI and having surgery in 2 weeks with my OBGYN. I have a $2800 deductible that I must pay but insurance covers costs after that. I thought it was way too much but I need the surgery and hopefully may quality of life will begin to significantly improve after this!
Hi thanks for your reply. No I did not end up going into the surgery as the extended birth control pills tend to put things under control for now. Still in the process of seeing how things will go.
If I do surgery, even if it is just the first one, I have made up my mind to go with the best specialist. I have done some homework and found out that I could potentially pay $8000- $10,000 because he is out-of-network. If I see someone in-network, I only need to pay very little. But again, what's the point if she/he can't everything sorted?
Is the OBGYN you are seeing out-of-network? Why do you have to pay that much for non-private doctors?
My out-of-network deductible is $500, and annual out-of-pocket max is $3000. But that max is a fake one as I was told because a lot of the charges don't count towards that. That's why I need to pay even more than $3000 as I initially thought.
That's great that the pills are working out for you! The longer you can put off surgery the better. I tried them and a bunch of other things but nothing has worked, it just keeps getting worse. I hope you continue to feel much better
My doctor is in my network... I didn't realize what an awful health plan I had chosen until this surgery came up. I just moved from another state so it was the first thing I've really had come up and when choosing a plan, I went with the cheapest monthly payment. Little did I realize what astronomical prices I would be paying for something that is "necessary" as my doctor put it. The office calls me and says, "Oh by the way you're going to pay $2800 towards deductible, then there's also hospital fees and anathesiologist fees... But don't worry they want to do the surgery and you can go on a payment plan after." Of course they want me to have it! When I renew my health insurance I'll be sure to be so much more thorough and consider the fact I may need more surgery down the line. I just didn't see this coming.
I see. I pay couple of thousands for my health insurance each year...so if you take into account how much I have already pays, even paying nothing does not mean paying nothing, does it?
Keep me posted on how things go for you and wish you all the best after surgery.
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