Tuesday, December 30, 2003

How does one find a fibroid specialist?

I agree, it is a difficult process. Most of the hospitals and clinics around here in the Seattle don't include very substantial information on their doctor profile pages about their expertise. Since OB/Gyn training and practice revolves around surgeries for multiple conditions I think they don't differentiate between procudures. But we as patients desiring uterus saving procedures know that there is a complexity here with the issues of blood loss, adhesions, retaining fertility, etc. that make us want someone who is passionate and fully vested in the outcome of our procedures.

I recently reread Sex, Lies and the Truth About Uterine Fibroids
and in it Carla mentions that some states have databases tracking medical procedures. Here is one of the examples mentioned in the book:

Center for Medical Consumers (NY)

Not all states track this information that it could even be published, that's another place where we need to weigh in and try to get our state legislators to help get us better information.

That said, it still seems like it is hard to find a doctor. There used to be a site that would allow patients to rate their doctors on a variety of criteria but I believe that was bought out by WebMD and it doesn't include that information anymore. Here are links to some directories that might be useful:

uterinefibroids Board Physician Database
Contains names of doctors that have been mentioned in the messages posted to this list with the number of the message to refer to -- inclusion in the database does not qualify as an endorsements of any of the practitioners however.

American College of Obstetrics and Gynecologists Physician Directory

WebMD Physician Directory

AMA Physician Select

You can also find out about licensed doctors in your state by visiting the state medical board web site; do a search to find the link.

The American Society of Reproductive Medicine has a page with links to a few other directories on it....

AMSR: Find a Doctor

MEDICAL RECORDS
Oh, and while we are on the subject, make sure that you request and keep copies of all of your records from the various doctors you see. You can then make copies to take with you if you confer with multiple care providers and it is helpful to be able to refer to them as well. Each State determines how much the clinic is allowed to charge for copies of the records but it seems to average around 75 cent to a dollar per page in my experience. To keep costs down just request the most relevant test results but you may want to have copies of all the chart notes as well. Each clinic will have a slightly different process for requesting records, sometimes a form or sometimes just a letter will do, and most of the ones I've been in contact with accept faxes.

Monday, December 29, 2003

The CDC -- hysterectomy info but no fibroid info

You all will like this one, the other day I was looking through the Center for Disease Control and Prevention (aka the CDC) website and I was surprised to find no mention of uterine fibroids. One would think that at the very least they would provide links to some of the other government heath websites (such as the ones listed in their response to me). There are other topics missing as well but my correspondence with them focused on fibroids. Read on...

My question submitted through their web form:

How is it possible that you have hysterectomy listed on the CDC website as a condition yet you don't have any listing for uterine fibroids? Since uterine fibroids are far more common than hysterectomy, and fibroids are also a disease while hysterectomy is a procedure, I would expect that the Center for Disease Control and Prevention to provide information for the former. Women need more
information about this condition -- prior to developing uterine fibroids.


Response from the CDC:

Thank you for your inquiry regarding uterine fibroids.

The Division does not have information for consumers on this topic. However, the National Women's Health Information Center (NWHIC) may be able to provide this information to you.

There are two ways to obtain information from NWHIC. You may call their toll-free number to speak with an Information Specialist (800-994-9662 or 888-220-5446 for TDD services) from 9 am to 6 pm (Eastern Standard Time), Monday through Friday. At any time, you may view and search their website (http://www.4woman.gov ) at any time.

Two other Federal information services may be helpful if you have access to Internet services. The National Library of Medicine offers MedlinePlus (http://medlineplus.gov), which provides extensive health information for consumers, including dictionaries, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials. Another general information service is the Department of Health and Human Service's HealthFinder (http://www.healthfinder.gov), a searchable guide to general health information. Many public library systems provide Internet access to local residents needing assistance or access.

Please accept our apologies for not being able to fulfill your request.

Public Inquiries Group (knb)
Division of Reproductive Health
NCCDPHP/CDC

Information about the endometrial lining and menstruation.

There is a substance produced in the uterus which is supposed to help prevent clots from forming, it is called fibrinolysin. When the blood flows too quickly (profusely) the anti-clotting fibrinolysins can't keep up and clots form. Heavy bleeding is called menorrhagia.

"Blood clots or flooding are indications of heavy loss. Normally the blood lost from the vessels in the lining of the womb forms small clots and this tends to reduce the flow. The small blood clots within the uterus are broken down by chemicals called fibrinolysins and the normal menstrual loss should be a fluid. When the bleeding is heavy, the blood is extruded too quickly for it to clot within the uterus. In this situation, the blood clots in the vagina and the menstrual flow includes blood clots. Whilst menstruation is inevitably an inconvenience, it should not result in limitation of social activity."
http://askwaltstollmd.com/archives/menstruati/95779.html#95952
(This doctor had his licensed revoked but the information seems valid so I included it, you will see mention of it if you scroll down through the previous link so I thought I would link to this page FYI: (http://askwaltstollmd.com/faq.html)

Check out these two interesting pages with detailed descriptions and diagrams of how the endometrium forms each month, for your reference:

NORMAL MENSTRUATION

THE ENDOMETRIUM

For more information search with these key words in different
combinations (such as "endometrium anti-clotting"):

menorrhagia, endometrium, fibrinolysin, anti-clotting

Saturday, December 20, 2003

Is it possible to not have problems when pregnant with fibroid/s?

From all the stories I've seen shared fibroids seem to be problematic during pregnancy, in example:

* they may grow
* they may outgrow their blood supply and cause pain
* they could restrict the baby's growth
* they (in rare cases) could cause deformity in the baby (pressure on developing bones)
* they could increase problems with bladder, kidneys
* they could outcompete the baby for the blood supply and cause miscarriage (or otherwise cause a miscarriage)

Surely there are people who have had other experiences such as fibroid reduction, no growth, no complications...and lived happily ever after. Anyone got a story to share?

Monday, December 15, 2003

Patient sharing info online and my mother's thyroid treatment when I was conceived

I know that doctors and the medical community are afraid of the information sharing that patients do online but I think it actually is to the benefit of the patient. Being able to meet other women in similar situations, and some not so similar, helps me keep things in perspective and not feel so alone. I like being able to ask tough questions of the doctors, I want the best medicine possible for myself.

I did meet a couple of women at a party recently who had fibroids during pregancy. One had no symptoms, the other one said that taking birth control pills afterwards (which she had never been on before) "melted" the fibroids away.

Here's a question my mother threw out to me last night. She was diagnosed as hypothyroid when she was trying to conceive back in the late 60s. They put her on thyroid medication, she said it was bovine source, and it was at really high doses. What might the affects of very high doses of thyroid hormone/s be on a developing fetus? I have only had the TSH test done with normal range results. Anyone care to speculate on whether this might have influenced some hormonal wackiness in me?

Friday, December 12, 2003

Mifepristone (RU-486)

In my research into progesterone over the past few weeks I did come across a couple interesting links which talked about how RU486 worked from a hormonal standpoint. These articles talk about it in relationship to endometriosis and depression, not really in the context of it an an emergency contraceptive. It's pretty interesting.


RU-486 may dramatically relieve psychotic depression


RU-486 Explained

Wednesday, December 10, 2003

Help Support Fibroid Research & Education

[please feel free to forward this to your friends and family, with whatever modifications you would like to make.]

I wanted to ask you to please contact your representatives to the House and Senate and ask them to support the Uterine Fibroid Research and Education Act of 2003 (House Bill H.R.2157, Senate Bill S.1087). These are both still in the Health subcommittees but it would be
great if more women would write in.

Uterine fibroids, non-cancerous tumors of the uterus, affect between 25% and 80% of women and can cause symptoms that may include: excessive bleeding leading to anemia, infertility, and put pressure on the bladder, urethra, intestines.

From the Senate testimony given last Spring by Maryland Senator Barbara Mikulski (with Senator Hillary Clinton of New York):

"Despite their prevalence, little is known about uterine fibroids, and few good treatment options are available to women who suffer from them. Right now, hysterectomy--the surgical removal of the uterus--is the most common treatment for uterine fibroids. More than 200,000 women undergo a hysterectomy each year to treat their uterine fibroids, which requires a six week recovery, has a 20 to 40 percent
risk of complications, and means a women can no longer bear children. Less invasive treatment options, like drug regimes or fibroid embolyzation, are promising, but many have not undergone the rigorous testing that women expect. In fact, the Agency for Healthcare Research and Quality at the Department of Health and Human Services
found 'a remarkable lack of high quality evidence supporting the effectiveness of most interventions for symptomatic fibroids.'

Women deserve better. That's why I am introducing the uterine Fibroid Research and Education Act--to find new and better ways to treat or even cure uterine fibroids.

This bill does three things. First, it expands research at the National Institutes of Health, NIH, by doubling funding for uterine fibroids every year for the next five years. Despite a budget of over $27 billion, NIH spent just $5 million on uterine fibroids research in 2002. This legislation authorizes $50 million over five years to provide the investment needed to jumpstart basic research and lay the
groundwork to find a cure.

This additional funding will help researchers find out why so many women get uterine fibroids, why African American women are disproportionately affected, what tests women can take to prevent uterine fibroids, and what are the best ways to treat them."


The research they might be able to do if this is approved could help other reproductive and gynecological conditions as well. At the very least it would help make sure women are given other options before hysterectomy.

Find your representatives here:

http://www.senate.gov/
http://www.house.gov/

To learn more about uterine fibroids, visit the National Uterine Fibroid Foundation website: http://www.nuff.org/health_statistics.htm

My Reasons for Not Wanting a Myo

Here are my reasons for not wanting a myomectomy:

1. major abdominal surgery
2. risk of adhesions
3. length of recovery period
4. fact that with multiple factors there isn't a documented increase
in fertility
5. they would require me to deliver by c-section if I did get pregnant post myo
6. that I'm largely asymptomatic except for slightly heavier periods and some pelvic pain for a few days prior to ovulation and at the start of my period

We don't even know if we want to do any assisted reproductive therapy anyway, we went to the reproductive endocrinologists (RE) to get their opinion on our situation (my partner had a vasectomy reversal and has an issue with sperm morphology -- morphology refers to shape of the sperm). It was just kind of intense having the head of reproductive endocrinology at a leading university tell you that he consulted with all of the other REs and they've decided they don't want to be my friend.

I've always wanted to go the natural way -- I was never on birth control pills, don't eat junk food really, stay fit. I don't like it when the medical establishment says (in its Terminator voice) "you are infertile. we will cut you open and remove that fibroid. take these drugs and we will harvest your eggs and MAKE you pregnant."

Now I don't know how the rest of you feel but I'm not feeling like I want to go out on a limb with any procedure since I would feel worse if I didn't feel like my care providers were on my side. I guess I will continue doing my watch and wait routine and in the meantime at least take advantage of the MRI order from the RE so I can learn more about what's inside of me. Maybe God or the Universe will intervene in the meantime.

Tuesday, December 09, 2003

Sheesh!


So, I've been keeping you apprised of my situation. I just got off the phone with the RE (RE#2) and here's what he told me...

...that they won't do fertility treatments on me unless I have my fibroid treated

...that if I have the embolization they won't accept me as a fertility patient

...that they recommend myomectomy

...that he no longer authorized the MRI

They won't do fertility treatments if I have the embo because they are worried about the uterine wall being weak (weaker than a uterus that has had multiple fibroids removed -- aka. myomectomy!?) and the possibility of multiple births being so much higher with fertility treatments. They are also a little concerned about not the liability but their stats, that somehow I might compromise their success rates.

Heck, no one knows why I haven't been able to get pregnant, it could be any of the following that I've been able to deduce...

* sperm morphology
* low progesterone (I started using natural progesterone cream)
* anemia/low ferritin (being treated)
* fibroid (though I've never even been kinda sorta pregnant)

I don't even know what to think know. It seems like my options are a) leave it up to God, or b) do the embo and then leave it up to God, or c) do the embo and do fertility treatments if needed, elsewhere.

We're not interested in adoption.

Maybe I should just go save the dying children in 3rd world nations and give up on this mother thing.

Saturday, December 06, 2003

Luteal Phase Dysfunction - Low Progesterone Info

I found this article which talks about low progesterone in the post-ovulatory (luteal phase) and saw that it does mention fibroids in the clinical section.

Luteal Phase Dysfunction

I know that not everyone has the same hormonal cause for their fibroids, and that they don't really know very precisely which they are and in which combination but for some of us progesterone supplementation might be helpful.

Anyone know the status of the fibroid research and education bills?

I wrote to my representatives last winter about the 2002 attempt to get this passed and wasn't paying attention when they were introduced again this past Spring.

Anyone know the status of Senate Bill 1087 and House Bill 2157 regarding funding for education and research of uterine fibroids? They were referred to commitee but I don't see anything on the committee web pages.

I thought this was a great line from the start of HB2157:

"The Agency for Healthcare Research and Quality found a 'remarkable lack of high quality evidence supporting the effectiveness of most interventions for symptomatic fibroids'."

Might we want to do a push where we write and call into our representatives? If I have time I might call the offices of some of the committee members to see what's up next week.

Here are some links:

House Bill 2157

Senate Bill 1087

Tuesday, December 02, 2003

About Menstrual Suppression

While researching the effects of progesterone on the endometrial lining today I came across some interesting site debating the efficacy of menstrual suppresssion (aka: extended contraception). I
can't say that I noted whether or not these sites mentioned it for use with uterine fibroids but take a look...

ASSOCIATION OF REPRODUCTIVE HEALTH PROFESSIONALS:
Choosing When to Menstruate: The Role of Extended Contraception


The Society for Menstrual Research
(click the link down the page for the statement on menstrual suppression)

CeMCOR - The Centre for Menstrual Cycle and Ovulation Research

Would you stop menstruating if you could?


More about menstruation:

Menstrual Cycles: What Really Happens in those 28 Days?!
(scroll down for more links)

The Menstrual Cycle: What your body is telling you

The Science of Menstruation

The Museum of Menstruation


Friday, November 21, 2003

Natural Progesterone Info

This site has a lot of information about progesterone but the navigation is a little weird -- you have to use the left navigation bar, roll-over HORMONES, the over SEX HORMONES, then over PROGESTERONE and you can click on the links that show up there. The directions they give are in contradiction with other information I've seen where you should only use it post ovulation (whenever ovulation occurs).

http://thecompounder.com/hormonesprogesteronefaq.html

I have this article bookmarked from this site linked which you might find helpful, it is by Dr John Lee and it talks about why transdermal dosing of progesterone is preferable. Note that it says too much progesterone can "[result] in rather high levels of allopregnanolone and the woman becomes rather anesthetized by it, a state that is sometimes confused with depression" -- so that would be a side effect if too much is taken.

LETTER TO A COMPOUNDING PHARMACIST
Delivery of steroid hormones.

You can learn more about progesterone by reading What Your Doctor May Not Tell You About Pre-Menopause(also by Dr Lee)

Back from RE#2

I've just gotten back from a visit with the RE and guess what my pooled progesterone test showed....I have low progesterone. (I feel like I have a twisted mind because I'm glad they actually found something off in my endocrine system). The doctor said that they would have to supplement me during the second half of my cycle when I was trying to conceive (um, wasn't that what I was already doing?). My progesterone is 9.4 and I found mention of it on a site that said "A level above 15 ng/dl is desirable".

I brought up the desire to have UAE with him and he said he could tell I was extremely knowledgeble on the subject -- thanks of course to the ladies on the NUFF group and on the embo list. He wasn't aware that there was anyone doing the procedure at that medical center (and the RE is the head of the fertility clinic) so my research and consultations with the IR may help other women as well. He did mention that he was understanding my willingness to be a guinea pig (which I am), since there isn't that much information (no randomized studies) on the affects of embolization on fertility.

He told me that I should continue taking iron supplementation ongoing due to my heavier periods. I know this to be true even though my menorrhagia (heavy periods) are nothing compared to the flooding some other women have reported in the NUFF group. FYI my period lasts a full 7 days, it is a little heavier now than when I was younger (I'm now 33) but not dramatically so. I do have some clotting and I do also double up on protection since a bad episode with flooding when I was in high school.

He said that there wasn't a link between hypothyroidism and low progesterone (although Dr Lee mentioned that low progesterone may mimic mild hypothyroidism).

I have a referral/Rx for the MRI now so I can schedule that and get more info.

So, it wasn't that bad and we didn't get into any arguments. He's going to consult with the IR next week.

Stay tuned for more info soon.

Wednesday, November 19, 2003

Response to someone concerned about myo and bleeding

You can ask your doctor to have an Interventional Radiologist (IR) on call in case there is excessive bleeding. That way they can stop the bad bleeding.

Remember as well that the UAE procedure was discovered as an effective treatment for fibroids because a surgeon in France sent in some of his patient to get embolized prior to their myomectomies --so he could reduce the amount of bleeding during the surgery. Rather than being polar opposites or just alternate procedures, myomectomy and UAE are also complementary procedures.

The IR I've been talking to about UAE here in Seattle told me that he recently was called in, after there was excessive bleeding and some other complications arose from a myomectomy. He asked the surgeon why he didn't just call him in when things first started going wrong. The surgeon just hadn't thought of it.

If our doctors are going to rely solely on their training, which most of the time didn't include interventional radiology as an approach to stopping hemorrhaging, to do these procedures and aren't going to be a little more creative about taking advantage of alternate approaches than it is even more important that we educate them. The risks of hemorrhaging are there with all of the gynocologic surgeries including hysterectomy, myomectomy, c-section, and even with childbirth (and probably miscarriage too).

Saturday, November 15, 2003

Going in for a Consult with the RE about UAE

I'm going in to see the RE (reproductive endocrinologist) next Friday. He's one of the doctors I interviewed for my myomectomy (the one I cancelled last month). I needed to continue working getting more information, particularly about my hormones, and he was the only one that suggested that I have my progesterone level checked prior to surgery. I just did the pooled progesterone test this past cycle, 3 blood draws on days 5-9 post ovulation. I'll get the results at this appointment. (I'm kind of hoping they say that my levels are low, just so that there would really be something wrong with me -- do you ever feel that way too?)

I'm feeling a little nervous about going in and telling him that I want to have the embolization procedure instead. I'm afraid of having to get into a disagreement with him, where he doesn't believe in UAE for women trying to conceive. Well, if I don't like his reaction then I just will have to work with a different doctor.

One thing I've been thinking about is that for years I had low level anemia and none of my doctors made a big deal about it. I didn't like to take pills/vitamins and besides my doctors said that some women just tend to run anemic. My naturopath that I started seeing right after I was diagnosed with my fibroid last year thought that this anemia needed correction and I think she was right. I was so used to having low energy that I didn't even realize the affects, or even that I could feel differently. I think probably a lot of us had heavier periods our whole lives and didn't understand the affects of that on our health.

I still have low ferritin, at least as of September. I basically have to just take iron supplements ongoing. Luckily I've found a chewable type that is agreeable with my system. Related to the fertilty issue that many of us are dealing with, I found this mention yesterday and thought it interesting (link to full article is below), especially in light of the fact that many of us our anemic here.

"Be sure your iron levels are adequate. A blood test (a ferritin level combined with an iron level and iron binding capacity) will tell you this. Unfortunately, doctors are trained to say the iron is normal if your ferritin level is at least 9 ng/ml. Although a ferritin level of 9 shows you have enough iron to prevent anemia, one can have infertility from ferritin levels less than 40. Because of this, I would look at your ferritin test results yourself and make sure the level is at least 40 ng per ml. In a study of women with infertility with ferritin levels less than 40, half of the women quickly became pregnant when put on iron. If for some reason you are unable to get your ferritin level checked, it is not unreasonable to take iron (e.g. Ferrous Sequels 1 tablet 1-2 times a day for four months). I also would take iron if the percent saturation of iron (calculated from the iron & percent saturation tests noted above) is
under 22%."

From: Effective Holistic Treatment for Infertility

Friday, November 07, 2003

Dermoid Cyst for my Sister

My sister's MRI last week indicated that her right ovary is twice the normal size and that she has a dermoid cyst. This was the first MRI she has had done. Her doctor didn't do an MRI prior to her abdominal myomectomy last Spring where they removed 6 fibroids totally the volume of a grapefruit.

She continued to have pelvic pain after the surgery and didn't know what was up. The doctor told her she would feel better after the myomectomy and that wasn't the case. She started having ovarian pain when she was in high school. The dermoid cyst was probably the thing causing her pain and not her fibroids.

She will have to get more information before deciding on when to schedule the surgery.

Dermoid Cyst Facts:
* Dermoid cysts contain cells that are fetal in origin. They can contain hair, teeth, skin, sebaceous oil, and even eye tissue (I don't know what that means). One website said that it was from a self-activated egg that was trying to start growing in the absence of fertilization but I'm not sure if that is true or not. Otherwise it might just be left over from when you were a developing embryo.
* Ovaries are fairly adaptive and even a portion of tissue remaining will continue to function
* Sometimes the dermoid cyst will take over the ovarian tissue, this sounds rare
* There have been cases where dermoid cysts have turned cancerous, but it is a small percentage of the time.
* The medical term for a dermoid cyst of the ovary is a ovarian teratoma.
* The name of the procedure that doctors do to try to save the ovary is called ovarian cystectomy.

Related Links:

Will dermoid removal affect getting pregnant?

Dermoid Cyst

What are ovarian cysts?

Ovarian cysts ~ treatment
"If you are under forty, s/he is likely to recommend leaving the ovary intact, particularly if you want children. Even if the ovary is badly damaged by the cyst and only a small part remains, that part can still go on working normally."

Ovarian Cysts

Laparoscopic surgery of dermoid cysts--intraoperative spillage and complications.

LAPAROSCOPIC OVARIAN CYSTECTOMY: SELECTION OF PATIENTS AND CONSEQUENCES OF RUPTURE OF OVARIAN MALIGNANCY

Ovarian Teratomas: Tumor Types and Imaging Characteristics

Teratoma, Cystic

Wednesday, October 01, 2003

I cancelled the myo

I posted yesterday about being depressed about my upcoming abdominal myomectomy. Thank you to all who replied. I went back and looked at Carla's book, and reflected on the other information I have obtained over the past year. I also thought about how the surgery was making me feel, right now at this point in my life.

I wasn't going shopping for new fall clothes because I knew I wouldn't be able to wear them for some time. I couldn't sign up for a printmaking class I wanted to take because I was going to be recouperating. I couldn't audition for a modern dance company this month, even though I'm dancing the best I have in my life. There were so many other things too that the surgery was going to prevent my participating in.

Then I thought about the fact that a myomectomy won't definately improve my fertility and that with male factor infertility (MFI) we hadn't even tried any less invasive procedures first.

I talked with my partner last night and we agreed that I'm not ready for the surgery right now. The prospect of surgery, when I'm not feeling ill and don't expect to for some time, was akin to torturing myself. I would have cried for days prior to surgery, up until the time they put me under and then when I awoke I would cry again, for the discomfort, the impacts (albeit hopefully short-term) and for not knowing that the surgery fixed anything. I know myself and how I react to things, I'm not making this up.

I have decided to shift my plan back into the wait and see strategy that has worked fine for me to date. We'll continue to look into treatment options that will deal with the MFI; I'm figuring that if surgeons are so quick to operate on me for a fibroid that I should at least have the option of trying ART (assisted reproductive technologies) first.

Here is an interesting article that I found (after I decided):
http://www.obgyn.net/displayarticle.asp?page=/infertility/articles/myomectomy_infert

There is also this study, but it is $19 for 1 days access:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=10402378&dopt=Abstract

Wish me luck. I may decide to go ahead with the myomectomy but for right now I'm not in the right place to move forward with that option.

Tuesday, September 30, 2003

Myo next week, feeling depressed

My surgery is scheduled for next Thursday October 9th and I'm feeling depressed about it. I need to have the surgery due to fertility issues -- we're likely going to have to do IVF (although I pray that we don't). I'm 33 and my 6cm fibroid is just going to continue to grow, even if my naturopathic treatment helped slow it down.

I don't have the bleeding that many of you are experiencing; my heart goes out to all of you with debilitating symptoms. I feel periodic discomfort and then there is the infertility. Otherwise I'm completely healthy and I think that's why the prospect of having the surgery is so sad for me. I just don't want to feel bad, and right now it is the surgery that is going to cause me more short-term pain.

When I compare that to the prospect of not having children I think it is a reasonable trade off to have the surgery. But still, how did the rest of you get through the last few days of anticipation prior to your surgeries?

Thursday, August 28, 2003

Delivery Post Myo

With a myomectomy the surgeon is removing tissue from multiple layers of the uterine wall. Depending on the size of the fibroid/s there also may be extensive work removing and stopping the flow of blood to
the vascular network the fibroid has created for itself. The surgeon then has to suture all of the layers together, how they are able to do that and keep the organ intact is amazing really.

I have heard that they remove the uterus after they deliver the child via c-section, to have better access while sewing it back up. I don't know much about c-sections really but I imagine it is a much neater cut.

One doctor told me that the reason that c-sections are (somewhat) necessary post myomectomy is that the uterine contractions are really intense during labor and could potentially rupture the uterine wall (where it was weakened by surgery) during labor. He told me that I likely would have a hard time finding someone to deliver for me vaginally when the time came (I'm scheduled for my myomectomy for the beginning of October, no babies for me yet). Many woman have been able to deliver post c-section but it is a bit different post myomectomy.

Best wishes for your quick and healthy recovery.

Thursday, August 21, 2003

Supplements I was on with my Naturopathic Doctor

The six month treatment was the change in diet, rest, reduce stress, start taking vitamins and supplements daily. The vitamins and supplements I was taking (and really you shouldn't take these on your own but only under the care of a naturopathic doctor) are:

* Simplex F (1 tablet 2x daily, all cycle long)
(http://www.standardprocess.com/)

* Spectra 305-P (2 capsules 2x daily post ovulation until start of next period)
(http://www.integrativeinc.com/)

* Lipotrepein (2 capsules 2x daily with meals, this is to help with liver detoxification)
(http://www.thorne.com/)

* Daily multi-vitamin (1 tablet daily, I buy mine at a health food store)

* Folic acid (1 drop in juice, liquid drops which was incidental you could also take tablets)

* Vit. B supplement (I wasn't good about taking this but it is supposed to help with stress, B vitimins tend to upset people's stomach's so be sure to take with meals and not on an empty stomach)

* 500 mg of vitamin C (2x daily, I did chewable tablets)

* Quercetin (this is a bioflavenoid that was discovered at the same time Vitamin C was discovered, it works and an anti-inflamatory and I was taking this for my respiratory allergies -- the activated form works as well as Allegra for me -- amazing)

For assistance finding a naturopath, this web site has links to naturopathic physicians organized by state:
http://www.advancednutrition.org/assist.htm

Wednesday, August 20, 2003

What I've learned so far

I thought I would share some of what I've learned over the past year from various doctors including a naturopath. This may differ from what you've been told and I'm just a regular old person so you should definately talk to your doctor about any treatments options you might like to pursue.

Fibroids are spongy tissue that change size with the levels of your hormones in your cycle. They respond particularly much to estrogen, they aren't as sure about progesterone. Un-opposed estrogen in your body, that is estrogen that is not matched with a comparable level of progesterone, is believed to be a factor. Pain is caused partially by prostaglandins which fluctuate during the month as well; ibuprofen may be taken preventatively to help manage prostaglandin production but it isn't good for your liver.

Your liver is a key organ in balancing your hormones. This organ filters out excess hormones from your system and packs them up for excretion through the bowels. Constipation and sluggish bowel movements mean that your body isn't able to efficiently expel waste from the system; you should be having a bowel movement at least once a day otherwise this is you. What is worse is that in your intestines the body will reabsorb the excess hormones back into the system causing a build-up and making your liver work double-time. Many women have problems with constipation and progesterone during the second half of our cycle (post ovulation) is partially to blame.

Small dietary changes can really help your liver out; I tried these things suggested by my naturopathic doctor and my fibroid did not grow at all during the next 8 months.

* Drink at least 6 glasses of water each day
* Increase your consumption of foods that help detoxify your liver:
green leafy vegetable (chard, collard greens, spinach, etc.), garlic,
onions, artichokes, lemons
* Decrease your consumption of refined sugars (this can increase your body's production of stress hormones which might be linked)
* Eat organic foods only
* Decrease your consumption of meat
* Increase your consumption of fish to 2-3 times a week

I was taking vitamins and herbal supplements and used castor oil packs for about a month (they are a pain but they sure help you slow down and take a break before bed. I also greatly reduced the amount of stress in my life and increased the amount of exercise I was doing. I read about progesterone supplementation but my naturopath said that doing that would actually compromise my body's ability to produce progesterone on its own; instead she wanted to help coax my body back into balance. After about 6 months of treatment my cycle had changed. I no longer have PMS for 2 weeks out of every month and even my allergies have subsided. I'm amazed.

I have a 6cm intramural fibroid and the doctors have told me that you can't have a fibroid as large as I do without a major distortion of the uterus (an x-ray in June revealed that my uterus is wrapped around the fibroid to the right). Women who have one large fibroid tend to not get addition fibroids, women with multiple fibroids tend to get re-growth. I'm scheduled for an abdominal myomectomy at the beginning of October.

My younger sister just had an abdominal myomectomy this past March for multiple fibroids, she even had one pressing on a major artery at the back to the abdomen that doctors shrugged off for year as pain "in her head" without doing any diagnostics on her. She was on birth control pills (BCP) for the past 10 years at least, on "continuous cycling". I was never on BCP and I only have one fibroid. We've learned that our mother had a fibroid when she was in her 40s but was able to wait it out until menopause and our great grandmother had one the size of a "cantaloupe" and needed emergency surgery.

I hope this is helpful for you.