I need your help. My youngest sister probably has endometriosis. I'm making it my own personal mission to make sure she gets help now (and the right help) and I'd like to see what all of you think.
So she has been having painful cramping since she was a teenager and, at that time, her doctor put her on birth control for it.
Well, a year or so ago (she's now 27), she started to have extremely painful episodes exactly like my endometriosis attacks. Like identical. It happens on the day before or the day of starting her period and it's debilitating. She describes exactly what used to happen to me. Terrible pelvic pain, thinking you might die. I told her right away about the only solution - taking four advil and using a heating pad - and it works. And, like me, it doesn't happen every cycle. It's probably only happened two to three times total. And, for what it's worth, she also developed a sensitivity to caffeine around this time, at the same age that I did.
I knew the first time she told me about it what it was. I mean really, what else could it be? And no matter what it is, it should be dealt with.
For the past year or so I've been encouraging her to go to the doctor. I've told her all about NaPro and finding a good surgeon, and I've stressed how important it is to get it taken care of as soon as possible. She's not yet married, but I've told her over and over how I would be doing her a great disservice if I let her wait until six months after her wedding day before seeking help. Not only would that cause her unnecessary heartache, but the endometriosis could also have gotten progressively worse.
Today she saw her ob/gyn. I encouraged her to take that first step, since it was small and doable and because I thought going to see Dr. S in PA might be too overwhelming right off the bat. I prepared her for the appointment, made sure she mentioned that her older sister had stage IV endo, and that she didn't want to only go on Lupron.
Well, the one thing I didn't think of was the one thing the doctor suggested - a stronger birth control pill to suppress the endo (which she agreed it most likely is). The one that gives you only four periods a year.
Now obviously I told her this isn't a good idea, but I wasn't exactly sure of the reasons why. I am not an advocate of birth control, and obviously don't support it for moral reasons, but I am not very knowledgeable on the medical reasons behind not using it. I know pumping your body full of chemicals isn't a good thing, and I imagine that using something to suppress a problem doesn't solve it, right? The last thing I want is for her to just ignore the endo for the next couple of years until she goes off of it when trying to conceive.
Her doctor also told her that surgery doesn't always fix it and that she'd hate for her to go through all of that and not get rid of the endometriosis. But, as I told my sister, a good surgeon will get rid of it, or at least get rid of it for several years. I know surgery doesn't cure us (obviously, since mine came back), but it's the best option, right?
So her next step is deciding whether to fill the prescription for the strong bc pill. She also has an appointment for an ultrasound (although the doctor did tell her that it can't totally diagnose it, which I was glad to hear she said) which she's going to go to. And I'm really encouraging her to call Dr. S's office and make an appointment (I told her that the bloggers are now scheduling into March). I gave her the number this afternoon and hopefully she'll call. If she decides not to, or if he doesn't take her insurance, she could end up having it done around where she lives. If that is the case, what are the important things to ask the surgeon to make sure they are doing it the correct way?
She is obviously very upset and overwhelmed about all of this. I'm so proud of her for going to this appointment today and making a step in the right direction. Now I hope she gets in with Dr. S and can have surgery with him.
It must be scary to have to deal with this before you're even married, but I know I wish that I had done that. I just want her to get it taken care of before it ends up causing her years of heartache. If I know I can do something to prevent her from going through what I have, I'll do it. I think I look at her kind of like me in the past, and I wish someone had grabbed ahold of me and diagnosed me correctly years earlier. I feel like it's my duty to help her.
So I know I'm preaching to the choir here about all of this, but I am interested to just hear your opinions, especially on why the stronger bc pill wouldn't be a good idea. Also, would it be bad if she just fills the prescription for the new bc and takes it until she sees Dr. S?
I'm going to have her read your comments, so please leave some for her!
Thursday, December 17, 2009
My sister
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Babies everywhere/callme mama I think is very knowledgeable about this subject - particularly how b/c feeds endo. Sorry, I'm not a direct help.
ReplyDeleteBTW, she has a great sister to care so much.
You are such a good sister.
ReplyDeleteThe problem with bcps (among other things like increased cancer rates) is that they treat the symptoms, not the problem.
A good doc will want to solve her problem, not just ease her pain.
I personally subscribe to holistic and homeopathic healing and there ARE such cures for her illness.
Whichever route she goes, I hope she gets the help she needs. I'm glad she has such a great advocate in you.
If she feels comfortable with it, I'm sure some of us who have endo would be willing to talk to her, so she can get advice from an outside source. I wish that I'd gotten treatment for the endo that I've clearly had since I was a teen. When I was on BC, it still didn't help me to not have painful period which tells me that it's not worthwhile (not even considering the moral concerns).
ReplyDeleteYou are a great big sister to be making sure she gets the help she needs.
I'm dealing with the exact same situation right now, but with a 22 year old sister. Immediately, she was put on natural progesterone cream (got it at the compounding pharmacy) and she takes it according to these directions: http://www.endo101.com/dose.htm
ReplyDeleteShe's taken it for just a month or two now, and already seen some great results. If/when her pain gets worse, she will be scheduling a surgery with the Center for Endometriosis Care in Atlanta - they are the experts at excision of endo. It took me 2 failed surgeries and one lost ovary to realize that I needed to go to the experts, so DH and I told my sis that we're not letting her make that same mistake!
The problem with bcps for endo patients is the estrogen - estrogen feeds the disease, and just because it stops the pain that is caused by your body ovulating every month, doesn't mean that it is helping the endo. In fact, the disease can grow at a higher rate, and can be much worse when you come off of them.
Endo patients overall tend to be estrogen dominant, so treating progesterone deficiency is a good start anyway...
I feel so sad for your sister having to deal with this - it's so painful to watch someone you love deal with this disease. She's lucky to have you as a sister to help her through it!
K, You are such a sweet sweet sister!
ReplyDeleteC, I'm so sorry you are going through this! The good news is that you'll have amazing treatment that will hopefully combat everything before you begin your family. I have no clue about any of the medical side of things, but these bloggers know what they are talking about so listen to their every word. They've lived through it, unlike most doctors, so trust their opinions. I'm praying for you sweetie!
BC is only going to ease her symptoms for now. It treats symptoms and not the underlying issue which may seem appealing to her right now but if you can get her to really see and understand just how important dealing with this now is and what it can/will mean for her reproductive health in the long run....you will have given your sister a gift that goes beyond measure and words.
ReplyDeleteI emailed you a few weeks ago about my endo and taking Lupron...I am in a similar situation to your sister as I am not married yet either but still want to do anything I can to preserve my fertility. I tried for years to get a dr to diagnose me with endo (my mom had it bad), but no dr would say I had it. (until they had to do surgery for an ovarian cyst) Fortunately due to bleeding issues over the years, I was on birth control off and on, which I think kept it from getting too bad. When they finally did the surgery for the cyst, they didn't find any in my tubes or on my ovaries. So I think there are some benefits to being on the pill- it doesn't just alleviate symptoms, it also prevents the lining from being built up every month, preventing it from forming in the uterus and outside of it. Now that I've had the surgery and am now on the Lupron, I will be taking bc pills basically until I get married because from what I understand, as long as I stay on the pill, the lining won't build. So I don't think it would hurt for your sister to go on the pill for now, in fact its only preventing more endo, BUT something should also be done about the endo she may currently have. So as long as she doesn't just go on the pill and not do anything about the symptoms that she had before, it might be a good temporary solution. Sorry for such a long response!
ReplyDeleteI really believe that BCP's are really bad medicine. Period.
ReplyDeleteFirst off the can ruin the cervical crypts that are so important in creating the all important cervical mucus.
They are abortifacient.
They are un-natural and are not good for your body nor the environment.
They just suppress the problem and do not help to eliminate the issue. Endo is a surgical disease and needs to be excised to be treated.
If you want, K, I can talk with your sister, feel free to send her my email. I have taught quite a few young unmarried women to chart and directed them to the proper treatment for their issues. They are some of my favorite clients to teach. :)
I wish that I had a sister that cared so much about my reproductive health!!! If my doctors didn't try to mask all of the pain that I had to go through before I was diagnosed I would've had so much more time (and maybe even kids!) right now.
ReplyDeleteYour sis is so lucky to have such a strong advocate!
THis reminds me so much of my sister, which is a very complicated situation.
ReplyDeleteI'll pray for your sister, that she is fully healed and gets the right treatment!
I am so proud your sister actually listens to you! I am very concerned about mine. Sisters with endo is a huge risk factor to having it yourself, my older sister had it as well. Please check out my blog, even if it is only the recap on the side. Going off the pill and seeking authentic treatment for endo through napro was how I got treated for it and learned about and treated 90% of my IF problems BEFORE I got married. Best of luck to her, I will keep her in my prayers and am happy to answer any questions via email or whatever.
ReplyDeleteAbsolutely no way in HECK would I ever say bcps (especially the strongest ones!) are a good idea for ANYONE!
ReplyDeleteMost of the other comments already outlined the medical risks involved, specifically as they relate to endo.
BUT, let me remind you (and I'm not being dramatic), aside from the synthetic estrogen doing nasty things, the progestin leads to CLOTS - which can lead to clots in the legs, or a pulmonary embolism, or even death.
(And God forbid she has a predisposition to clotting, anyway, which as it turns out most of the population MAY have at least 1 clotting factor, this is a SERIOUS risk!)
Finally, it can take your body 6 months to a year to fully recuperate from the "normal" bcp, i.e. build back its natural lining, start to return to ovulatory function, etc. So, 6 months to 1 yr before her wedding, would your sister want to start experiencing all that pain coming back again? And this time, with a vengeance?
K, on a more personal note, I can honestly see God's hand at work in your life right now. It is so clear to me that you are serving as a witness to save your sister (possibly even her LIFE) because of the experiences you've gone through. I don't know if that's comforting or not, but I just think it's so beautiful!
I'm not as knowledgeable about how endo works as some here. But I do have a couple of thoughts. First of all, contraceptive pills are not morally wrong to use and certainly not abortifacient with someone who is not having sex. (If we are supposing that K's sister is sexually active, then we are assuming she is using some form of birth control anyway, yes?)
ReplyDeleteSecond, I thought that depo-provera (the pill that causes you to get four periods a year) overrode your natural hormone cycle to cause you to have the ordinary peaks and valleys only that many times. If you have an estrogen surge (and therefore lining buildup) only 3-4 times a year instead of 12-13, it seems to me absolutely logical that the endo would not get as bad, as fast. Lupron doesn't work by attacking the endo directly, it works by preventing lining buildup, right? So that the adhesions don't swell/spread? So depo would be basically the same idea, just without the bone density loss, hot flashes, and psychotic episodes. But perhaps I am mistaken about how lupron works (I'm definitely not mistaken about the side effects).
Here's another thought. She's 27. Let's say her surgeon is really good and actually gets the endo into remission for three years. What if she's not married yet at 30? How many surgeries should she have? I am skeptical about the utility of this surgery (I've had two now). If your endo is really very mild, perhaps there's a good chance of it being knocked out for good. If it's very bad, however, your post-surgery prognosis is either get pregnant (and we all know how that goes - when you're ALREADY married and ttc), or bide your time until the next surgery. I think multiple surgeries have got to be worse for you than depo.
Just my thoughts. Don't have a conclusion to offer, I just think that contraception has been demonized overmuch in Catholic circles (the pills themselves aren't evil), and the Catholic doctors lauded too highly, when sometimes their (understandable) prejudices do their patients more harm than good.
Oh, can't BELIEVE I forgot this most important point.
ReplyDeleteMedical FACT: the use of the pill in women BEFORE THEIR FIRST FULL-TERM PG (which is the majority of women on the pill today) is linked dramatically to breast cancer.
Dr Chris Kahlenborn has a book all about this, and I posted some videos on FB a while back. Here they are again:
http://vimeo.com/5007720
http://vimeo.com/5008882
http://vimeo.com/5016897
I'm absolutely not demonizing the pill just b/c I'm Catholic. And clearly, as misfit said, it is not abortifacient if there is no intercourse/conception. But death is a pretty serious risk, I'd say!
Have her talk to FJIEJ- I think she can help ease your sister's fears which I'm sure she has a ton of.
really interesting discussion here- and great job trying to help your sis.
ReplyDeleteI HATE that BCP are the go-to drug/remedy from so many docs. Arrg!
I don't have advice for her case- but just to clarify from misfit's comment-- depo provera is a shot that can alter the monthly period.
Seasonique is the Pill where you only bleed 4 times a year. (still a fake "Pill" period- not bleeding due to a normal hormonal cycle.)
All the best to your sis in these hard decisions!
I just listened to a discussion on this same topic on Ave Maria Radio today. Some resources they suggested in addition to Pope Paul Institute are OneMoreSoul.com and Couple to Couple League. The book, "Fertility, Cycles and Nutrition" by Marilyn Shannon is also a good resource. In that book, she recommends Women's Health America (womenshealth.com)for Hormone treatment. Personally, I have been helped tremendously with my hormone imbalance with homeopathy. Good luck to your sister.
ReplyDeleteI'm not Catholic so my comments may not have any value here. But I am a health care provider. I'm not trying to get into any type of religion debate here but I am afraid that several commenters have a less-than-accurate understanding of a couple aspects of reproductive physiology and of the mechanism of action of birth control pills.
ReplyDeleteThe 4-times-per-year birth control pills aren't "STRONGER" in terms of hormone content - it's about the length of time that the hormone-containing pills are taken. "STRONG" birth control pills from the olden days aren't even on the market any more. The strongest pill available is a 50mcg pill and we typically reserve those for patients with bleeding and platelet disorders whose health would be in grave danger if they had a menstrual period.
Secondly, I think it is important to note that endometriosis can only be definitely diagnosed via laparoscopy. Unless I misread your post, it didn't look like your sister had surgery already (did she?) Severe dysmenorrhea, as disabling as it can be, is not in and of itself a diagnosis of endometriosis. Up to 40% of people who give a history of severe dysmenorrhea (and other very convincing symptoms) have absolutely no evidence of disease upon surgical exploration, AND up to 40% of people who are completely asymptomatic have significant disease found upon laparoscopy. Severity of disease does not correlate with severity of symptoms.
I am making no claims to be coming from the Natural/holistic/herbal/etc perspective. I am fully vested in the modern medicine of reproductive endocrinology and infertility. You are correct in thinking that if she does, in fact, have endometriosis, and is treated surgically, it may have time to resurge if several years go by before she tries to conceive. I have lots of experience treating patients with endometriosis who are trying to conceive but do not want to offend anyone by describing the treatments and the reasons these treatments are needed.
I hope that she can find a solution that works well for her and that everyone is comfortable with.