So friends, I am in need of advice.Since my diagnosis two weeks ago I have had to deal with the implications of my impending treatment. I mentioned last week that I spoke to my FertilityCare practitioner and she directed me to the Pope Paul VI people. She wasn't sure if Dr. Hilgers uses L.upron in the treatment of endo. So I e-mailed the nurse (a phone call was just too difficult logistically) and I got my response today.
L.upron according to Dr. Hilgers, is a no go.
Here is what she said:
Dr. Hilgers does not recommend Lupron. It does make the endo dormant, but
does not in any way treat it. The only way to get rid of the endo is to have
it all removed. Until the time that it is all removed it does continue to
multiply. But, Dr. Hilgers does not feel that shutting a woman's cycle down
is the answer while waiting the have the major surgery. You would want to
ask about the percent of recurrence of the endo after the doctor does
surgery. Dr. Hilgers is extremely meticulous and his recurrence rate is very
low. He is also very good at dealing with the adhesions and fibroids without
leaving more adhesions behind. I attached a letter explaining how to do a
consult if you are interested in possibly having Dr. Hilgers work with you.
I am in a conundrum here. My surgeon is not going to operate on my endo unless I go on the L.upron (at least this is what I assume since he didn't give me any other options when we spoke post-lap). I also cannot justify the expense of going to Omaha to have Dr. Hilgers remove my endo. Honestly, can I really turn away FREE health care????? I know that there are Canadian women that go to Dr. Hilgers for their treatment (my practitioner told me so), but I don't have $10 000 sitting in my bank account to pay for surgery. I do have cash in the bank to pay for my basement renovations, but we can't touch that since we're already hired a contractor!
So what do I do here? My instincts and husband both say that I should go for it. A woman on my staff and her sister we put on a similar protocol (although it was almost 30 years ago) and they both went on to conceive seven children between them. I think of Beth who just had her second child who was on the drug. I think of another friend that said that it shrunk her endo so much that her surgery isn't going to be as extensive.
Am I crazy to go against the advice of a doctor that has helped so many? Or am I putting faith into a surgeon that has come highly recommended and who works at a Catholic teaching hospital?
I don't want to kick myself if this doesn't work, but I know that if I don't go with my gut that I will be second-guessing myself for the rest of my life.
Help!!!!
That's a tough one! We were very fortunate that we had changed our health insurance before we even started down the path of NaPro--it made a huge difference in the medical bills. I really see the practical financial issue here, especially with the distance and the difference between Canadian and US medical systems! I think finding out the recurrence rate for your surgeon is so important--I might start there. From everything I've heard and read, the surgeon makes such a big difference. I really don't know about whether to go with the pre-surgery treatment or not, but checking out the surgeon and asking the tough questions (if you haven't already, that is) sounds good to me!
ReplyDeleteWhat a crappy conundrum.
ReplyDeleteI think the answer here unfortunately lies with the money. If your doc who is free won't do the surgery - which I think both docs would agree you need - without you doing the Lupron and you have no real chance of having the other doc do the surgery, I'd say go with the Lupron.
I would go back to Dr. Hilger's nurse though and ask why it is that he doesn't like to shut down the cycle - she said that Lupron makes the endo dormant and that surgery is recommended. You are going to have the surgery - you aren't using Lupron to fix the problem. So, why doesn't he like it? I would want to know that before moving ahead definitively.
Good luck!
I am stumped for you. I asked P to read your post and he is asking who your Dr. is up there. You can email me if you want:)
ReplyDeleteHmm. I would not go to the states for endo surgery, I've been, as you know, contemplating surgery for several years, and I did my research, and came up with the doc that I'm moving ahead with, you have researched the sugeon you are moving ahead with, and feel good with him - so go for it. I would do the lupron anyway, while it is NOT a cure at all, and while it does NOT benefit everyone (the first time i did lupron when i was 19 it didn't shrink anything) it did significantly help me this time..(and I find this surgeon to be odd as every endo surgeon I've talked with or read about recommends lupron first as it can help preserve your eggs - so I find that odd). .So surgeons make a big difference and if you were really going to pay for it, search out the biggest name in the US and go for him, or simply use the doctors here, they really are JUST AS GOOD as these guys, in this city we have access to the best health care in the country.
ReplyDeleteI had my surgery for the adhesions within five hours of being diagnosed with endo (literally). So I certainly didn't have to go on a drug regimen before my surgery. But, I wouldn't think they would have required it even if it had taken a few weeks for the surgery to be scheduled. Instead, I was prescribed lupron AFTER the surgery, to keep the endo from coming back - not that it worked. (I'm thinking this is what the nurse is referring to when she says that Dr. Hilgers has a low rate of recurrence - that's why you don't NEED lupron.)
ReplyDeleteMy personal preference would be to schedule the surgery as soon as possible and not take any drugs until then. (An honest OB/GYN will explain that lupron really only works insofar as you don't menstruate, and it might take a few cycles for you to stop menstruating. How long are they planning to wait for this surgery???)
The other thing I would do is try to find the absolutely best doctor possible to do the surgery. If Dr. Hilgers can get a very low recurrence rate, other people should be able to, too. See, he doesn't just dislike lupron 'cause he's Catholic. Lupron SERIOUSLY causes birth defects - they won't put you on it unless you're on birth control or not having sex, AFAIK. And endo causes infertility. Ergo...lots of endo patients want treatment for IF, and can't possibly be on lupron. There have to be non-Catholic doctors who've realized this and gotten good at the surgery. I think any OB/GYN *could* perform it - you want to find one who's made a specialty of it. There must be one somewhere who'd be covered by your insurance. (In the US, there are doctors in various places who have studied under Hilgers or use his methods.)
I agree with you about going to Omaha. It irritates me that people suggest I go halfway across the country (and not to New York or LA either, but the middle of nowhere) just to get medical care. This is America, and I am not the first-ever diagnosed case of this disease. I think it's ridiculous to treat it as some sort of exotic illness - just find a skilled practitioner in your area.
My $.02 (or so).
OK, so I'm playing devil's advocate here (um, but wait a sec... when did Dr H become the "devil," lol! Maybe I'm playing angel's advocate!) - - but I personally have a very STRONG reaction AGAINST Lupron whenever I hear or read about it being used to "suppress" things. They use it in IVF cycles. 'Nuff said.
ReplyDeleteMy own personal opinion is that I would do whatever it takes to go to Dr Hilgers for the surgery. I definately didn't have extra $$ lying around for Dr Toth's treatment, but somehow, some way, God provided and we came up with the $10,000 for that.
If you look into all the options for financing and it still doesn't seem likely, here's what I'd do. I would NOT take the Lupron, and tell my Dr I did.
Lupron can kick a woman into early menopause in some cases!!!
All of the excision docs I spoke with, at the CEC in Atlanta and my local doctor, have all said lupron is no good and they won't give it to their patients. Mostly because it shrinks the disease, and if you're trying to remove it all by excision during surgery, they could miss some that will reemerge later.
ReplyDeleteI am so with you on the expensive-ass treatment that is the fate of us Yanks. It was a huge additional stress for us on this fabulous craptastic journey.
ReplyDeleteI'm complete ignorant of the way the Canadian system works, but is it possible to get a second opinion from another good surgeon in Canada who would be covered?
Mrs. X has a good suggestion: open the conversation with your Canadian surgeon re: why Lupron is his first step of choice. Ask about studies and research that support this approach. Remind him that your goal is children, first and foremost.
My opinion (for what it's worth... now even historians are handing out gyn assvice! :) )-- Lupron just prolongs the process of getting rid of the endo that's likely at the heart of your troubles, without (from what I've read in studies) much improvement in pg rates. It also makes you feel like crap.
You'll get this figured out and find the right way for you. Everyone's path and choices are unique...
One more thought that I didn't mention in my email to you. I do have to agree with "callmemama."
ReplyDeleteThe primary reason P does not use Lupron is because he wants to see all the endo, in all its ugly glory. If the Lupron shrinks it down, it may be easy to miss ... that is a valid point.
However, simply because a drug has bad side effects (or risks in some cases) doesn't mean one shouldn't take it. And simply because it is used in IVF cycles doesn't mean one shouldn't take it. For example, Dr. Hilgers himself uses HCG Trigger (I believe), and is also not opposed to the use of certain gonadotropin drugs that are also used in IVF cycles (I believe).
As Catholics, we don't oppose certain treatments simply because they are "artificial" or "not natural." We also don't oppose contraceptives on the basis of their being not "natural."
Our reasons are theological in nature (separating the creation of life from an act of love primarily.)
There is also nothing natural whatsoever about surgery, or the overwhelming vast majority of IF treatments. But we may use many of them anyway (except for IVF or IUI or any other treatment allowing for the separation of life and love, even if only in the collection of sperm).
I just wanted to throw that out there ... and reiterate a point that has already been made - that above all else - one should find a skilled surgeon who specializes in the treatment of stage 4 endometriosis. Nothing less will do for you.
JB maybe you can talk to the doctor about your concerns with lupron. Talk to you Dr. T about your concerns with the treatment and maybe you can be seen by someone else, even talk to your practitioner/instructor, they may have suggestions. If you are uncomfortable using it find out by asking doctors and healthcare providers questions and telling them your concerns.
ReplyDeletePraying for you!
Dr. I seems reasonable and if you haven't asked him yet or stated your concerns then you should. Depending on his reaction to your concerns that will show you what type of doctor he truly is. YOu are in the right to ask/speak concerns about your body and treatment even though you aren't a doctor. Doctor's don't know everything!
ReplyDeleteAs horrible as I know the side effects of Lupron are, I would totally take it in this case.
ReplyDeleteIf it shrinks the disease, it means less cutting in surgery, which means less adhesions afterwards.
Really, you have to do what you are most comfortable with and make the decisions you can live with in the future.
I took Lupron for my endo, and, for me, it did not work. I stopped my injections in July, by Dec at my first US since the injections I had a large cyst on my ovary and both my ovaries were glued to my uterus.
ReplyDeleteBut, I have another friend who did well with it.
I dunno. It's such a personal call. IMO, call your Dr., or set up an apt, and say, hey, do I have alternatives here. And, if so, what. List some things you;ve heard of and see what he/she thinks.
On the castor oil packs...are those okay to use on open incisions? I thought I remembered my NP saying no...but, that was a long time ago. Good thought though, I will need to look into!!!
Good luck!!!!
You know what I would say :)
ReplyDeleteI'd take Lupron again in a heartbeat. I totally trust my doc who prescribed it and it worked!! he told me he got all my endo the second surgery. I would'nt change a thing.