• Quick note - the problem with Youtube videos not embedding on the forum appears to have been fixed, thanks to ZiprHead. If you do still see problems let me know.

A Confession... med. professionals please read

Nex

Forum Turnip
Joined
Oct 9, 2004
Messages
1,655
I'm putting this here in the science forum because it seems that the doctors and medical professionals come here most. I'm sure you all have heard something like this before, maybe, but bear with me.

This is why I became a skeptic, and why I hate sCAMs so damned much.

I just need to get this off my chest. Here I can be anonymous. I'm embarrassed. No matter how stupid you think I may have been, trust me, I've kicked myself over it enough already.

When I was 19, I had a surgery to remove a portion of my cervix. I had an abnormal PAP smear. They wanted to make sure I wouldn't get cancer. Between this, a tilted uterus, and some serious hormonal imbalances, my gynecologist and GP were both of the mind that my chances of conception were somewhat low.

Fast-forward to 2003. I got married to the most wonderful man in the world. We wanted children. With my condition, I wanted to make sure we could conceive.

We couldn't afford fertility treatments. Still can't, but it doesn't matter now anyway.

I started taking these herbal supplements for fertility. They contained a bunch of stuff, but I remember saw palmetto, black cohosh, fenugreek, and something else. I took them according to the directions, 3 pills a day. I took them for about six months, maybe eight, and then I stopped taking them because I was gaining weight and was feeling tired all the time. I didn't like how I felt so I knew they probably weren't doing much good. The weight gain and the tired, listless feelings came on slowly, which is why I took these herbal things for as long as I did.

I began having some soreness in my stomach not too long after I took these things. I kept hoping it was a sign of pregnancy, but the tests always came back negative. My doctor never knew I was taking these herbal supplements; I didn't think it was necessary to tell her, and she never asked.

Over the course of a year, the stomach pain went from soreness to a sharp pinching feeling. On May 31st of 2004, at 4:30 am, I was taken into the emergency room with severe stomach pain.

It took them 14 hours to find out what was wrong. My liver was riddled with tumors.

I was assigned a team of 4 doctors. A gastroenterologist, a gynecologist, a hepatologist, and an endocrinologist. They worked together to figure out why a 25 year old woman, in the prime of her life, had a swollen liver filled with tumors.

It was those goddamned pills.

I was sent to a huge teaching hospital on the East Coast of the USA for my surgery. It took 6 hours, and was performed by one of the US's leading liver transplant surgeons. He removed a bit less than half my liver, and my gall bladder as well.

I was in agony for 3 months afterwards. Nothing dulls pain like that. Nothing. All morphine did was make me sleep, and I can tell you, unconsciousness was the only blessing I had during those long lonely non-visiting hours.

That surgery was on the 3rd of June, 2004. It's been almost nine months. I still have pain sometimes, and I still have to sleep with a pillow on my stomach. My nerves are a mess. There are days where the pain from neuropathy is so bad I can't barely breathe, I can only sit slightly reclined and gasp like a fish out of water. I have a bandage on my navel that keeps anything from touching it, because if there's any touch or feeling there, it screams bloody murder.

I have a foot-long hooked scar that runs from my sternum around to my side, following the curve of my ribs. The ongoing joke is that you could stick your head in that hole, it's so big.

Those f***ing pills. Now I've got almost no chance of conception or carrying to term. I took them to help me, but they ruined it all. I consider myself the luckiest woman in the world that my husband doesn't mind. He says he's with me because he wants me, not because he wants a breeding cow. :)

So, if you have a patient taking this herbal stuff, saw palmetto, black cohosh, or fenugreek, tell them about me. Tell them what that stuff did to me.

That's why I'm posting this. I want the doctors and medical professionals here to see this.

Thanks.
 
Omigosh Nex, my heart aches for you. Can the doctors prove it was the pills that did this to you? Can you take some action against the manufacturer?

These things need to be made public so other don't take the pills.

Did they say why the pills did that to you liver? What the heck was in them?

This is why people need to know that taking unregulated substances is a horrible idea. The claims that big pharma want them out of business merely because they are "competition" is a huge lie. It's doctors that have to clean up the mess these supplements make. If anything, big pharma is making money treating people harmed by supplements.

You're not the one at fault for taking those damn things Nex. It's the society's fault that allow these things to be sold. You stopped taking them once they were shown to hurt you, you didnt' lie to yourself and keep taking them after the surgery.

You're not stupid either, it's not like the bottles carried warnings. They don't need to. The people selling these things are stupid for allowing people to be hurt this way. They are the ones who lie about "big pharma" and how "safe" their products are.

I would only call you stupid if you were still taking them.

Kudos to your hubby for being a truly caring guy and not leaving you in the dust. You're definitely not stupid girl, you know how to pick em!
 
Eos of the Eons said:
Omigosh Nex, my heart aches for you.
Thanks. I'm OK though. I look at it this way -- I'd rather be hurtin' than dead.

Eos of the Eons said:
Can the doctors prove it was the pills that did this to you? Can you take some action against the manufacturer?
No. We've gone 'round that with my GP. She was kind enough to speak with her lawyer (medical law specialist) for us, and the lawyer said that trying to prove that they were the cause would be too difficult.

**edited to add**

Linking the tumors to the herbal stuff is easy, linking it to a specific company is not. There are hundreds, maybe thousands, of herbal fertility pills on the market, and I don't remember which one it was. At the time I didn't think it was important to commit it to memory. I didn't think there'd ever be a problem.

**edited a 2nd time to add**

Because there's no solid evidence yet that these types of pills cause tumors in an overwhelming amount of people, I doubt anything would come of it anyway.
My surgeon did say he's seen a rise in young women having liver tumors removed, but he was very adamant in saying that he doesn't have data to support a hypothesis like that yet. He did assure me that there is research being done in that very hospital, but results are years off.

So the law can't help me here. Hopefully it will be able to help someone else someday.

Eos of the Eons said:
These things need to be made public so other don't take the pills.
It'd be nice. Honestly, I'm scared to put forth the time and effort. I'm currently trying to maintain a 4.0 GPA in school so I can get into the medical university that saved my life. Only this time as a CRNA student. I don't want to take on anything extra. Maybe that's just a cop-out, I don't know.

Eos of the Eons said:
Did they say why the pills did that to you liver? What the heck was in them?
Saw palmetto and black cohosh both contain hormones but I don't remember what. Androgynes, I think. The fenugreek contains a different type of hormone. I wish I could remember all the stuff my doctors told me, but I don't -- by the time they had most of it figured out, I was already out of surgery and on LOTS of morphine. All I remember was that messing with your hormones like this can lead to these kinds of problems if you do it long enough.

Eos of the Eons said:
You're not the one at fault for taking those damn things Nex. It's the society's fault that allow these things to be sold. You stopped taking them once they were shown to hurt you, you didnt' lie to yourself and keep taking them after the surgery.
I know. Doesn't stop me from thinking I should have looked into it further before taking them.

Eos of the Eons said:
Kudos to your hubby for being a truly caring guy and not leaving you in the dust. You're definitely not stupid girl, you know how to pick em!
Thanks. I'll let him know. :)
 
Lisa Simpson said:
Black cohosh has been linked to liver problems.

http://www.mja.com.au/public/issues/177_08_211002/whi10119_fm.html

This talks about hepatitis.

Oh man. They are selling this Black Cohosh supplement in my local Superstore as an HRT for women undergoing menopause.

Nice big billboard to go along with it! Do you think that is what caused the majority of Nex's problems? If so, then there are a lot of people in my town that are going to get sick.
can cause the body's immune system to launch an attack on the liver, doctors warn.
http://my.webmd.com/content/article/75/89785.htm
Oh great!
 
Sorry to hear about your misfortune, Nex. Sharing your story can help others. I think your story also underscores the fact that people often don't believe herbs to be "medicine" and feel that they don't need to tell their doctor that they are taking it. Likewise, often many doctors don't know what these herbs are even if you do tell them. But, people should always mention everything they are taking, from prescriptions to over-the-counter pills to herbs or vitamins, when they see their doctor.

I hope you feel better. Don't give up complete hope of having children either. The liver has an amazing capacity to regenerate itself. And, despite the issues with your cervix, there is always the possiblity that you can still conceive.

Lastly, don't beat yourself up too much about having taken these pills. What's done is done. Now, just focus on getting better.

-TT
 
Nex said:

I know. Doesn't stop me from thinking I should have looked into it further before taking them.


This gets me thinking. We are used to thinking things are regulated, tested already, and that any warning labels are required.

How do we help those that would welcome the information as you would have? You can't be a minority?

Thing is, as usual...anybody putting out information on supplements will be accused of working for "big pharma".

This is so frustrating!

Looking at all the variables, why would you think you would have had to look into things further? It's rather insanse that we even need to think that. The warnings should be on the labels and things should be tested for efficacy and safety beforehand. Sigh.

People have fought to change the double standards that supplements get, and they keep losing. Why?
 
Eos of the Eons said:
Do you think that is what caused the majority of Nex's problems?

I have no idea. The only reason I know about black cohosh, is that my sister-in-law also tried herbs for fertility. It didn't work either, although she had no immediate side effects. However, later she found out that she's a DES daughter and she was afraid that some of the herbs she took might increase her chances of breast, ovarian or cervical cancer.

My s-i-l did manage to get pregnant without any medical help of any kind, just out of the blue. But she also had cervical problems and had to be on bed rest for 5 months of her pregnancy. My niece is 8 years old now. :)
 
Eos of the Eons said:
People have fought to change the double standards that supplements get, and they keep losing. Why?

Because these same people often do not realize that the supplement industry is a $20B/year market and has a huge lobbying interest in Washington. Kind of ironic that they point their fingers at Big Pharma as being an evil, greedy corporate interest ultimately uncaring of the people they claim to help.

:i:

-TT
 
Lisa Simpson said:
... later she found out that she's a DES daughter and she was afraid that some of the herbs she took might increase her chances of breast, ovarian or cervical cancer.

Off the top of my head, I only remember DES being associated with clear-cell carcinoma of the vagina. I'm not really sure (without further looking into it) how it plays into breast, ovarian, or cervical cancer or how it affects fertility. So, despite having a daughter, your sis-in-law should still continue to be monitored for this.

-TT
 
Nex,

Thank you for sharing this story. It is important for so many reasons.

Please ask your doctors about referral to a pain clinic or neurologist with a specialization in neuropathic pain. We have some helpful drugs (anti-convulsants like gabapentin) that might be able to help and also you could explore some cognitive pain coping strategies.

In the meantime, you might think about reading Managing Pain Before it Manages You . This is an empirically validated program from which many of my patients have obtained significant benefit.

Finally, please forgive yourself. You made a mistake. You survived and you have a full life ahead of you. Please don't waste a moment more bashing yourself for a completely understandable mistake.

TS
 
Eos of the Eons said:
This gets me thinking. We are used to thinking things are regulated, tested already, and that any warning labels are required.

How do we help those that would welcome the information as you would have? You can't be a minority?

Thing is, as usual...anybody putting out information on supplements will be accused of working for "big pharma".

This is so frustrating!

Looking at all the variables, why would you think you would have had to look into things further? It's rather insanse that we even need to think that. The warnings should be on the labels and things should be tested for efficacy and safety beforehand. Sigh.

People have fought to change the double standards that supplements get, and they keep losing. Why?

As I understand it, they can get away with it because herbal supplements, etc. are considered food items and therefore, not required to be regulated and tested in the same manner as drugs.
 
Wow. I didn't expect so many responses. Thanks to all of you. Forgive my laziness in not responding to every post.

Eos of the Eons said:
How do we help those that would welcome the information as you would have? You can't be a minority?
I don't know. If my doctor or someone I knew, like a friend or my mother, had told me it was dangerous I wouldn't have bothered with those pills, but if some anonymous stranger on a message board said something, I doubt I'd have listened.

I'm sure that many people taking black cohosh and other supplements are willing to listen if it comes from someone they trust.

Eos of the Eons said:
Looking at all the variables, why would you think you would have had to look into things further?
Hehe, well, hindsight's 20/20. I obviously didn't think I had to look much further than the label back when I bought them. Now I know better. I just wish everyone did.

Lisa Simpson said:
I have no idea. The only reason I know about black cohosh, is that my sister-in-law also tried herbs for fertility. [...]
I'm happy she's OK! I guess an eight-year-late congrats is in order? ;)

TruthSeeker said:
Nex,

Thank you for sharing this story. It is important for so many reasons.

[...]

Finally, please forgive yourself. You made a mistake. You survived and you have a full life ahead of you. Please don't waste a moment more bashing yourself for a completely understandable mistake.

TS
You're welcome. And thank you for the advice and book recommendation. :)

I know I just made a mistake, and I try not to kick myself. I figure just posting this here will help me feel better, because hopefully someone thinking about taking that stuff will see this and think twice.
 
Nex said:
I'm putting this here in the science forum because it seems that the doctors and medical professionals come here most. I'm sure you all have heard something like this before, maybe, but bear with me.

This is why I became a skeptic, and why I hate sCAMs so damned much.

(snipped)

That's why I'm posting this. I want the doctors and medical professionals here to see this.

Thanks.

I'll being taking some of these links into work that were put on after this post. I might only work for health insurance, but the more we know, especially those who are medical directors and nurse case managers, the better we can advise and create informational programs to our clients.

Nex: we don't talk much. But I just want to say I am so honored you chose to share this. Heck, this touches me with pride AND sadness, the second part for your personal problems, but the first because of your courage to speak about it at all.

Now, if anyone gives you a hard time about any of this, let me know. I'll send "cousing Vinnie" to say "hello" to them. ;)
 
I don't know how it works there, but in Australia I am pretty sure that herbel remedies are regulated, too. That is, you can have them only if they are non-toxic, harmless things to make you feel better about a problem. A 'natural' pharmacy company in Australia recently was shut down because their standards of quality were so low that even a medication that was harmless in low doses was so badly manufactured that a batch went out that gave people massive overdoses of the active ingredient and nearly killed some people.
 
AUP wrote:
I don't know how it works there, but in Australia I am pretty sure that herbel remedies are regulated, too.

I don't know how it works in the US either but my impression is that the herbal/health food industry in the US has little regulation.

My own suspicion is that the health food/herbal remedy industry produces almost nothing of value in treating illness or advancing health. I haven't seen anything in their marketing that suggests their products are backed up by scientific testing. I occasionally listen to their pitches on radio. If even 10% of the pitch was true the touted remedy would be among the greatest medical breakthroughs of all time.

What regulation there is comes from manufacturers getting their asses sued off when a product causes enough damage that a nationwide class action nets millions for the lawyers bringing the suit. This produces a bit of a challenge for the health food/supplement industry. Most medicines that actually are effective also have side effects so that if one wishes to actually sell something that works one has to expose one self to the possibility of getting one's ass sued off by the people damaged by the side effects. So my guess is that manufacturers pretty much opt for safe remedies that actually aren't effective treatment for anything but also don't produce undesirable side effects.
 
First a disclaimer, I'm on your side. I don't recommend any untested remedies. I try to be a very strict evidence based medicine practitioner.

But I have to say just because these supplements are unregulated and I'll have to look into that black cohosh liver tumor connection, doesn't mean you or we know those supps were the cause of the tumors? If we are going to be skeptical of claims made by supplement supporters here shouldn't we also not jump to the conclusions supplements cause things either?

I try to remind patients if they are convinced a coincidental relationship implies cause and effect, they not only chase the wrong treatment, they could also be missing the opportunity to find and address the real cause.

What was the cause of your abnormal cervix? Is it possible what ever caused that was also a potential tumor generator in other locations? Do you have any genetic predisposition to tumors? What did the pathology report show after your liver surgery? Was the report consistent with a supplement or toxin generated tumor? Do other people have these tumors without taking the supplements? You just can't be certain without a lot more data.

I found this but that is only one source and no mention of liver tumors is made.
 
Sorry to hear about this Nex, I wish you well for the future.

One thing you said that no one has addressed and concerns me:

Saw palmetto and black cohosh both contain hormones but I don't remember what. Androgynes, I think. The fenugreek contains a different type of hormone.

The hormones are added by the manufacturer? Since they have biological activity then they should be regulated and its therefore illegal to sell them without a licence. Do the FDA know about this? Please clarify.
 

Back
Top Bottom