Dearest Gals of the Endo Chat Line !
I do believe it is imperative to seek consultations with many specialists, so you can make up your mind, whether to seek advice (ask for an appt for a consult), you just talk to the prospective Dr's, in their office, not an exam, sit down and ask away, make sure to bring a list of questions, take notes, have your hubby, mom, friend, whomever, go with you, two heads are better than one ! take notes, or tape record the visit ~ of course tell the Doc you are going to record the visit, they should not mind and if they do, I would be very hesitant to even continue the appointment, see how it "feels" to you. We all have vibes of good and bad), talk of initial surgery, or if you have to have any more or future surgeries, thyroid & hormone levels, if you want to try to conceive (ttc), Lupron or other Rx's, and most importantly a partial or entire hyst.
Find out as much information as possible about all these Docs ! Do some research on your own....Ask the Docs how many surgeries they do weekly, monthly, year, of endo, other womens diseases, do they have surgery early in the week, early in the morning, on and on, email me if you would like more information [email protected]
Ask if they believe in excising, not laser, laser has caused major problems for me and other gals, also it does not remove the endo deep enough and leaves burns....so...that is very essential. Having a cystoscopy while having surgery is a good thing, you will be "asleep" they do that procedure first, to check the inside of your bladder, make sure you have no endo in there, or a bladder disease called IC ~ many Docs, who don't know what they are doing, try to blame all of your symptoms on another disease. Then they make you have horrible testing when it could be done without pain.
Here, where we live now, (we moved to S.W. Virginia) my Endo Dr. is a Gyn Oncologist. They know how to remove endo deeper than an Gyn/Infertilty/Endocrinologistor a regular Gyn. When we first moved here, (We lived in Maine where we had lived for many many years, and I had a great "team" of Docs, so when we moved here, I did much research, asked sorority sisters, old college friends, etc)
reach out !!!!
I emailed my IVF Doc up in Boston ( we tried IVF 4+ times and lost all the pregnancies, I had over 8 miscarriages we think, and there could have been more....). He is the one who told me to seek out the GYN Oncologist. There are still so many many bad Docs out there, and they think a hyst is the answer to everything, due to them NOT knowing what to do !
I have had 24-25 surgeries now, and I am still here, kicking, as our dear Louise would say, and I am still in major pain. I had at least 6 surgeries since a full hyst. within a 5 year time ~ the rest over a 25 year period of time. I had a partial first, leaving my ovaries etc. and then 4 months later had to have the rest taken out. It is a major head trip and I did go to counseling and my therapist, a woman, helped me so so much. I only saw her due to back issues, but then talked to her about allll the endo icky stuff ! Wish I talked to her sooner, but I don't think I was ready. I saw her off and on for over a year....
I would also recommend trying to find a therapist who deals with "chronic pain" as they know alll about any type of pain and if your insurance covers it, I would highly recommend that for all of us. Like any Doc that is new, just make an appointment for a consult, which means you talk to them in the Doc's office, no exam and then see if they can help you or not....interview them per se.....also always retain your own copies of all Docs notes/files, OR reports, path reports etc. Endo can be clear, yellow, black, brown, chocolate, green....so an inexperienced Doc would not be able to see it when it is clear.
I would say not to have a hyst. Only if it is necessary and in my case it was. It was no cure whatsoever, and the only thing was no more horrible periods, changing pads on the hour or sooner, on and on, it was unbearable and totally changed my life. Having sex after a hyst is weirdo too, so I hope you have a lot of support !!!! You can have a partial hyst and try to save your ovaries, as the hormone "game" can be pretty tough, and bad side affects until your body adjusts, of course, natural ones are the best...I had to have a constant level of natural ones, they last 6 months, compounded by a Pharmacy in CO, my Docs insert them into my hip, they work great, all else made me so ill, worse than the flu ever ! I feel like that without hormones, so I don't have a choice of not taking any hormones....we are all different with regards to that one !
Also, Lupron, I was on Lupron for endo, then on it for long time while ttc'ing, IVF, and have permanent nerve damage in arms, legs, my legs go numb, off balance now, it made my back worse, I have disc degeneration, and it eate away 3 more discs in a matter of months ! I have no discs left in my lower back, at least S1 S2 L2 L3 L4 L5 and so on...So, Lupron is not a good thing. I don't even think anyone should take it for endo. Most of you know, originally it was manufactured for men for prostate cancer !
But, we are all different. Also, your age has a lot to do with all of this, if you want another baby, and how good of shape you are in health wise and mentally. There are plenty of things out there for you to try !
Docs usually don't know anything of the Lupron law suit and now the civil action suits either, they don't have time to keep up to date on all of that information....
I have a rice recipee for a hot/cold pack, list of questions for new Docs, walk out of any Docs office that you don't like, or tells you "it is all in your head"...you are allowed to leave. You can say, "Excuse me, but I don't believe you can help me, good bye". That simple ! Angel has MUCH information on this site, so search and read, so do all the other gals, so don't be afraid to post away !!! ask ask ask & be your own health advocate always !
I had a Doc for 7 years ~ when she did not know what else to do (duh ~ she could have referred me to a specialist), she then proceeded to yell and scream at me, made me feel so so bad I cannot even tell you ! So, you never know !
Know that you are never ever alone, & we are all here for you always !!!!!
I sure hope I helped any of you with this bit of helpful information !!!!!
as always, my love, Laura Ann
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