Hi all- I'm new to this group and I wanted to know if anyone had a similar experience to mine or any advice for me. I was diagnosed with endo in 2011, but I have had pretty awful and painful periods since they started when I was 12. I'm 25 now and I've gone through ultrasounds at least twice a year for the last 13 years, and I've always been told there's nothing wrong with me. About 3 months ago I had another ultrasound to check the size of my ovaries, because my mother passed away from ovarian cancer last year, and the ultrasound tech's notes said I have a bicornuate uterus. I'm pretty shocked because I've had so many imaging tests and in addition I had a diagnostic laparoscopy in September 2011, and this has never been noted before. I even requested my doctor's notes from my surgery because she dropped off the face of the earth without letting me know she wasn't going to be practicing or that she was moving or anything, and she hadn't noted it in my chart. Since about 2009 my pain has increased quite a bit. It is to the point where no matter what I do, I am never comfortable. Nothing eliminates the pain completely, sometimes it hardly goes away at all. I have tried to just get used to it because I don't want to completely rule out having a family of my own since I'm so young, but sitting or standing for more than 2 hours at a time is almost agonizing. I take 10mg of percocet when I absolutely need it- which is about once a day- but my primary care doctor refuses to give me a new prescription, and the gynecologist I'm seeing now has told me that "it's not that big of a deal, there's nothing we can do." When I asked her about my bicornuate uterus in June she told me "Well, I don't know. But we can talk about it when you're ready to have kids. You're too young to think about it right now." I'm 25- I could have kids whenever I damn well please, and the fact that I can't get help or a straight answer out of any medical professional I've seen is ridiculous. I tried to get a referral to a specialist at UCSF and my insurance denied the claim because I'm not covered for infertility treatments. When I called to explain my situation, the woman told me if I had another problem, they could help me. I live in the CA central valley area, but at this point I'm willing to travel anywhere. I am going to lose my insurance in December because I'll be turning 26, and I'd like to have a treatment plan in place before then. My first laparoscopy didn't help at all- once I healed from the surgery the same pain came right back, and since the doctor who did it just sort of disappeared and overlooked the fact that my uterus is actually not the shape it is supposed to be, I'm not confident she did a competent job. I could definitely use whatever help anyone has to offer- if you know of a good gyno in the California central valley/ Bay area or anyone who deals with these issues, or if you have some treatment advice. I can't seem to get help from any doctor I've seen, and I don't know what else to do. I have seen 5 doctors about this and not one suggested I might have endo, I am the one who figured it out and asked for the laparoscopy. When I got out of surgery my doctor said I must have been in pain, because it was bad. I'm just really frustrated and I really need a doctor who can help. Thank you!View Thread
So this will be my second surgery for my endo- the first was in September 2010- and my current gyno suggested I go with the da Vinci robotics system instead of a traditional lap. I've read a bit about it and it seems a lot less invasive, and a lot more thorough, and I am extremely hopeful that I will get some relief!! Though my big sis did point out that even right after the surgery it's not going to be worse than the pain right now- it can only get better!
Anyway, I wanted to know if any of you ladies had a da Vinci lap and if you noticed a difference at all between the two? I am counting down the days, even though I have to go back to work a couple days after, I am just thrilled that for a while, I'm not going to be in constant pain.
If no one on here has had the robot lap before, I will gladly post some details and pros/cons after my surgery- fingers crossed!!!
That sounds horrible!!! I am so sorry for your incredibly long and difficult ordeal- unfortunately the only way they have to definitively diagnose endo or adeno is by actually going in and seeing it.
Brandi is right, reproductive endocrinologists are amazing. They deal with this stuff every day, and they know what they're looking for. They also tend to be more understanding, nicer, sympathetic, and willing to try new things to help solve your problems. If you can get your insurance to cover going to one, I'd say its totally worth it.
And it's hard to find a BC pill that works with your body, but when you get them, don't take the placebos. There is no medical reason for you to have a period, and when you're on BC pills the lining of your uterus is much lighter anyway. When you have your period, it signals the adhesions to cramp and bleed as well, which causes a ton of pain. I take my pills through without taking the placebos, and even though I'm always in pain, I am very grateful to not have period pain.
As far as your insurance goes, your doctor will need to write a special prescription, noting that you should not take the sugar pills at the end of the pack. You will need to call your health insurance and find out what you need to give them to allow you to fill the prescription early- usually a faxed copy of the doctor's written prescription from the pharmacy is enough.
Hope this helps! Good luck, and keep on your doctors. xoxoxView Thread
Thank you! That is what he put on the request form, but I'm going to appeal because they covered my lap 2 years ago and my pain has been so bad I am thinking of having another one, especially since I will lose my health insurance at the end of the year. The woman I talked to at my insurance company was awful, she wouldn't even try to work with me. I finally found a doctor in my area who is a reproductive endocrinologist, but she can't see me for months so I'm seeing another doctor in her practice who I've been told is really good too. And the nurse I spoke with said if he can't help me, he'll be able to get me an earlier appointment with the specialist. I'm just grateful to have spoken with someone who wants to help, and doesn't just write me off. I'm so tired of being told to just suck it up and take some ibuprofen. If that helped I don't think I'd be curled up on the floor, sobbing hysterically because I don't know what else to do. Thank you for the suggestion- I am definitely going to go through all the requests and make sure they talk about endo specifically. View Thread