Sunday, April 26, 2009

two good news and one bad news

Have had a lot going on in the past two days. Two good news and one bad news. Warning, this is a rather long post.

Good news 1:


I had a consultation on Friday with a well-known clairvoyant named Walter Makichen who specializes in working with couples with infertility problems. He is author of the book Spirit Babies: How to Communicate with the Child You're Meant to Havewhich I found very compelling and very helpful, and in my wanting to leave no stone unturned in this journey I wanted to get his input and also of course find out if he could see a spirit baby (spirit of an unborn child) hanging out with me. (This is all a bit more way out than I normally get into, but I picked up the book without knowing what it was about and it really spoke to me…)

He gave me lots of great info and insight (he was dead on about my personality and also my husband’s) and made me feel very optimistic about my chances of being able to have a baby. He gave me some personalized meditations/visualizations, and some suggestions of specific things to work on. The big thing though, that he said over and over in a kind of “wow!” tone of voice, was he was VERY impressed as he said that he can tell that I have done a lot of work on myself to get ready for getting pregnant, that my chakras were all hooked up well, etc. “Whatever you have been doing, it’s really working!”, he said “So these tools I’m giving you now, it’s really just fine tuning.” It's so nice to get some positive confirmation of all the efforts I have been making, that they have not been for naught. And he also said that he saw a spirit baby there, right in the pre-conception position which is the optimal place for it to be, it means it’s already bonding with me, so that is great news. (if you're curious about what this means, I suggest you read the book, it's fascinating...)

I was very impressed with Walter, he was so warm and supportive and perceptive. As part of my work, I coach and counsel people, and from a professional perspective I felt he was truly a first class example of how to advise someone effectively. I also feel like the exercises he gave me really work well. For example, I did one of them the next day when I was at the IVF clinic waiting in the examination room undressed, which normally is very stressful for me, but instead it made me really relaxed.

It was at the IVF clinic that I got the following news:

Good news 2:

The reason I went to the IVF doctor was for my antral follicle count, which they do to see how well your ovaries are likely to respond. He said there were 4-5 in the left ovary, and he couldn’t see the right ovary because a fibroid was in the way but he assumed it had the same number as the left, which would make a total of 8-10. He described this as “pretty good” and based on my looking on the internet, although this is a bit sub-optimal it is way above average for my age so that is something to be happy about I think.

Bad news:

The IVF doctor was not happy with my fibroids. He said, as others have, that there are 4-5 of them. He measured the three largest ones, and said that the biggest was 6.1 x 6.1 cm, the second largest was 4.1 x 4.8, and the third largest was 4.0 x 3.7. These measurements are a LOT larger than the figures that my gyn. gave me a couple of weeks ago. And in fact, never have I had any number over 5.2 for the biggest one, ever. So this was rather a shock, to say the least. He said that he wants them out before doing IVF. He recommended that I see a doctor in S.F. who specializes in doing myomectomy laproscopically so it’s minimally invasive. I googled him of course and it does indeed sound like he is a leading expert in this area and people say good things about him.

So, looks like a change of plans here and it’s time to get these damn fibroids out once and for all. I will call Dr. Brill right away and try to get surgery scheduled as soon as possible (one of the women on the fibroids listserv I am on had the same surgery with him and based on what she said I’m guessing it could be 6 weeks or so till I could get in for surgery). Then my uterus will need 3 months to heal before I can do IVF. When he told me this I was just so disappointed, because I was really gearing up to do the IVF right away and also because I don’t have any time to waste and 4 months feels like a long time.

So right now I’m feeling rather frustrated and confused. Well, that's an understatement. Really I am reeling and seething. How could I get such different measurements on my fibroids from the IVF doctor vs. my gyn. Could the largest one really have grown 2 centimeters in 2 weeks (The gyn told me it was 4, the IVF doctor says it’s 6)? Or is measuring through ultrasound just basically not very accurate, or vary widely depending on who is doing the measuring? (I asked the IVF doctor about this and he said that perhaps the gyn was just looking at another plane, but I think he may have just said that to be polite, esp. since he earlier said that the largest one is spherical, which according to my high school geometry means that all the planes are the same…) I'll share more information as I get it about how big my fibroids really are.

And how interesting that whereas my gyn thought I was fine to get pregnant with fibroids this size, the IVF doctor is not comfortable with it. (I guess it makes sense that if you are going to bother with IVF you would be more conservative.) It also makes me frustrated to think that all the fibroid-shrinking efforts may not have done any good after all, and that I have been wasting all this time when I could have gotten them out a long time ago. But, I know I have to stop beating myself up, and just move on.

Also, now I wonder about what I was originally told by my gyn, that due to where my fibroids are I am not a good candidate for myomectomy, that if they cut them out there would not be much uterus left. I guess we will see what the S.F. doctor says. Now I am kicking myself, perhaps in 12/07 when my gyn told me that I should have gotten a second opinion on operability. But she was so categorical about it that it didn’t seem like it would be worthwhile. Or maybe some of the shrinking work I have been doing has worked and has made it so that we can even contemplate surgery whereas in 12/07 my gyn thought it was not possible? (That’s kind of a stretch though to make myself feel better)

On the bright side, this gives us time to detox my husband’s mercury and lead and hopefully get his sperm in better shape. I’m also going to get my mercury fillings switched out ASAP and want to double-check to make sure every last bit of those heavy metals are gone from my system after the big detoxing I did in 2007.

So it looks like I need to focus on whatever fibroid shrinking I can do prior to surgery (my coach made me a special fibroid shrinking meditation tape and I will listen to it every day!), keeping my eggs happy in waiting until the fall, and on having a successful surgery and my uterus healing well after it. (I’ve never had surgery before, so am curious about what can be done energetically pre and post op that would be helpful…) I’ll also keep doing the stuff that Walter suggested to keep bonding with the spirit baby.

Ok, this is hard but I’m not giving up.

Not only is this news stressful and disappointing to me, I feel like I'm letting all of you down. I don't want to discourage anyone in their quest to shrink their fibroids naturally. Looking back on my situation, I think there are some reasons why I might not have had the success that I could have with my fibroid shrinking efforts.
1. One big reason is that it took me so long to learn what exactly one is supposed to, or can, do and not do, and eat and not eat. And what kind of things are effective or not effective. Unfortunately, it seemed like I had to go by trial and error, and many of the books or doctors I consulted did not really know what would be helpful and even steered me the wrong way in many cases. For example, vitex and progesterone cream may help some people but they were totally useless for me, and I'm particularly annoyed at the chiropractor who got me on the progesterone cream because now I'm reading it can even make fibroids worse. An acupuncturist I saw for a year and a half who claimed to have the answer turned out to not really know what to do about the fibroids after all. (We won't even talk about the first acupuncturist, who was really helpful at first but then got really flaky and left town right when I needed help the most...) When I first had the fibroids, I didn't have a good sense of how to apply the ideas in books like Healing Fibroids: A Doctor's Guide to a Natural Cureto create a practical and balanced diet, so I ate too much tuna and got a mercury overload, and I didn't get enough iron so I got really anemic. It was all just too overwhelming and too much information to sort out and figure out how to really make work. I spent so much time muddling around, and at times felt so frustrated and alone in this that I couldn't deal with it and went back to eating "normally" (e.g. meat and dairy). Also if only I had known about abdominal massage and hula hooping, I could have been doing it every day for years. If only I knew all the things I know now when my fibroids were first discovered 5 years ago! I would have done things so much differently.
2. The last year and 4 months has been a particularly busy one for me both personal and work-wise, so that has interfered with being able to do all the things I would have liked to do. In particular I have been particularly lax on the exercise. If I had been able to hula hoop or belly dance for an hour a day, and get more exercise in general and spend more time on some of the mind-body work, maybe that would have made a difference. My lower abdomen still feels cool, which means I haven't succeeded in getting circulation going there sufficiently. What if I had...
3. One thing I have really learned through this is that it's very difficult to try to shrink fibroids while trying to conceive. During the luteal phase, you are not supposed to do the exact kind of things that would help shrink fibroids -- take strong Chinese herbs that are designed to bust up stagnation, do vigorous exercise that involves shaking, massage your abdomen, and take enzyme supplements that can help break down the fibrin. So half the time during the last nine months I have not been able to attack the fibroids with the full arsenal. Also to help boost fertility they give you extra estradiol and progesterone, which could make the fibroids grow and also they overload your liver which is not good for fibroids. Given my age, I rushed into trying to conceive as soon as I got the green light, so I haven't had the luxury of giving the fibroid shrinking the dedicated focus that it probably needs.

So, despite my current predicament, I still do believe this blog has value, and that what I have been doing has value, for the following reasons:
1. If I hadn't been doing all of this, heaven knows how big my fibroids would have been by now
2. I now know what needs to be done to prevent fibroids from growing, which will help me prevent them from returning post-myomectomy. Many people have to have myomectomy more than once, which seems incredibly sad to me. I'm hoping that with the work I have been doing, I have gotten to the root of the problem and can prevent a re-occurence.
3. I am hoping that someone out there who is in the position I was in 5 years ago, of first discovering that they have fibroids, can use this information to get rid of them or at least keep them from growing. According to the Chinese medicine literature, something can be done as long as your fibroids are less than 10 cm, as long as you can give it enough effort and enough time. In my case, I really don't have time, that is my problem. If I can help anyone else, it will make me feel better.
4. All the work I have been doing the past 1 year and 4 months has helped make me an overall happier and healthier person, and I've learned a lot of things that will help keep my husband and myself happier and healthier for years to come. I also think all this work has likely contributed to my antral follicle count being above average, because trying to get energy flow better for the fibroids also helps the eggs. As Walter Makichen told me, all the work I have been doing shows. I have to be happy about that.



One last thing. I have just been reading the book Energy Medicine for Women: Aligning Your Body's Energies to Boost Your Health and Vitality, which is so fantastic I can hardly put it down. (Again, if I had only known then...) I will put a fuller review in this blog soon as there is a bunch of helpful info for fibroid shrinkers in there. But one thing I should mention that is in that book, despite her feeling that energy medicine is so fabulous, the author acknowledges its limitations, and as her example of this tells the story of her daughter. She had terrible fibroids and had all the best energy healers work on her, but they just kept growing and growing till she had to have them out surgically. The author tells the whole story of the surgery and it's fascinating. Perhaps my situation is like that too, where despite my aversion to surgery I just need to get some help getting rid of them. One of the things that Walter Makichen told me is that I have the tendency to put out a lot of energy helping others, and of not taking in enough help from others. So true. Maybe now I need to let the doctors help me rather than thinking I have to do everything in life on my own...

Sorry for the rather long post, just trying to make peace with this as I'm rather freaked out right now.

16 comments:

Anonymous said...

Hi!

An old anonymous fibroid friend here! Smiling! I recently discovered a book called the Highly Sensitive Person by Elaine Aron. The book has provided a new insight for me to some old suffering! I've learned that I am a highly sensitive person and it's been my lifelong filter for processing information - relationships, sexual lessons about my body, past sexual abuse, etc. Reading the book has shed some light on some painful chapters - it's been a difficult journey - but I have been working with my partner to do some personal healing. Just wanted to pass on some love and personal insights! I wish you the best with everything!
It's been intriguing to go deeper!

Some cool books:

The Highly Sensitive Person:
http://www.amazon.com/Highly-Sensitive-Person-Thrive-Overwhelms/dp/073510073X/ref=sr_1_1?ie=UTF8&s=books&qid=1240790640&sr=1-1

The Art of Everyday Ecstacy: http://www.amazon.com/Art-Everyday-Ecstasy-Margot-Anand/dp/0767901991/ref=sr_1_5?ie=UTF8&s=books&

Sexual Ecstacy, The Art of Orgasm: http://www.amazon.com/Sexual-Ecstasy-Orgasm-Margot-Anand/dp/158542028X/ref=sr_1_3?ie=UTF8&s=books&qid=1240790494&sr=1-3

Fibroid Shrinker said...

Thanks so much. This is indeed timely and interesting.

I went right away and looked at and ordered the Highly Sensitive Person book. It's interesting in how it combines talking about emotional sensitivity with sensitivity to your environment. I definitely have problems with being in overstimulating environments -- for that reason I do not own a TV. I hate loud places. I am sure that my discomfort at bars and loud parties is one of the reasons that I was single for so many years! I knew something was up with my reaction to noise and a few years ago even got tested and found out that I have a mild case of Central Auditory Processing Disorder (for more info: http://www.tsbvi.edu/Outreach/seehear/spring00/centralauditory.htm)

So it sounds like this book will be helpful...Thanks so much! The others look interesting too...

Fibroid Shrinker said...

Wow, wait a minute, I just realized you must have ESP. Because one of the things I was talking about with Walter Makichen is how I'm highly sensitive to the feelings of others, and how that affects me. So I was thinking, how nice of you to suggest a related book. But then I realized, I didn't write that part in my post! So really a timely suggestion, thanks again!

Crista said...

Hi!
I have been reading your blog since the beginning and really rooting for you to be successful. Having been diagnosed with one large submucosal fibroid about three years ago, I too tried a million different things to get some success without having to lose my uterus. I am only now 36 years old, and don't have kids yet either. Being Canadian, our system for health works a little differently, and when you get refered to a specialist you don't have a lot of say in who it is, or what their expertise is like. In my journey I have seen 8 different OG GYNs and all of them have had different opinions on the size of the fibroid or the treatment modality. I have also seen a TCM and a naturopath, acupunturist, healing touch specialist and had countless hours of massage and psychological therapy. And two weeks ago I finally had the last part of the fibroid removed hysteroscopically (it took two surgeries because it was so large, but in total I have had 4 surgeries and focused ultrasound at the Mayo Clinic in Rochester). The reason I am sharing all this with you is because I hear you getting so down about this latest diagnosis-and my advice is this: When a doctor told me something I didn't want to hear (like you should have a hysterectomy and get this over with)I switched doctors. I also learned that each doctor will only recommend the treatment that they are good at (medecine is a business to make money-even if we don't like to think of it that way)and will tell you what they are able to do, not what the next doctor might be able to do. I also learned that there is no one teaching OBGYNs what to tell their fibroid patients about prevention, aftercare from surgery or the genetics of fibroids. It is amazing to me that OBGYNs can't answer the simple question "Why do fibroids make some women bleed more and some not?" and after reading every article published in the last 10 years on pubmed about fibroids (I'm a dentist, so I can wade through all the medical terminology)I have come to the conclusion that OBGYNs that treat fibroids shouldn't also deliver babies as the scope of practice is way too large to be effective at both. I also have learned that if you ask a interventional radiologist, an OBGYN or and endocrinologist how to treat your case you will get COMPLETELY different treatment plans. The IVF doctor I saw told me I couldn't have my fibroid treated hysteroscopically but I did. The Mayo Clinic staff told me my symptoms would be gone in 6 months and they were 10 times worse. I also payed $15000 out of pocket for that treatment. Life just happens sometimes. I can say today that two weeks ago an extremely skilled surgeon went back inside me hysteroscopically and got the last of this fibroid and for the first time in three years I do actually notice a difference. My mom really summed it up best for me about all the things I was trying to change to get rid of the fibroid when she said "If people turn themselves inside out trying to change who they are to cure their fibroids how is that making their life any better?" I think you have been an amazing inspiration to many people, and you are not letting us down by having surgery. This fibroid diagnosis that we get is a starting point. Where we end up at the end is so different for every woman. What works for one makes someone else's fibroid worse. Your IVF doctor needs a nice wide open cavity to place your baby into, something that might not have mattered if you were conceiving naturally. I am proud of all the work you have done and all that you have shared with your bloggers, and I wish you all the best in this new part of your journey. And I do think my mom was right that some times you need to just give yourself a break! We wouldn't beat ourselves up because we have blue eyes, or small hands. Fibroids is just another part of you that you need to forgive yourself for.
Looking forward to the next post!

IKW said...

Dear fellow fibroid friend,

First of all, I'm so sorry you have to have surgery after all you've been through. My mouth was wide open reading your blog entry. It's so upsetting but definitely a move in the right direction perhaps in relation to having a baby and that seems to be your number one focus right now.

I've been trying to get a hold of that book about spirit babies for ages now. I had forgotten the name of it so thanks for the reminder. Your workshop with the author was amazing. It's so full of hope and positivity.

I wish you the very best over the next while. I have a hysteroscopic myomectomy mid-may and hopefully that will pave the way for babies!

Take care my blogging friend.

Anonymous said...

Sorry to hear your news. Don't beat yourself up though. Doctors and medical professionals constantly have conflicting information about what to do about fibroids. Seems NO ONE can agree on anything. It is all very overwhelming. You did the best you could. Time is of essense now. I think I may be in the same boat as you - I am 41 and have a fibroid that is 13cm by 12cm by 11cm and I am very adverse to surgery as well. I guess there comes a point when we have to consider more drastic options. BTW, I exercise faithfully everyday for an hour and a half (for my back problems) and my fibroid hasn't shrunk. So, that may not have worked for you either. Good luck with everything and keep us all updated. :-)

Fibroid Shrinker said...

Thanks so much for taking the time to write such a long post, for sharing your story and for the very encouraging comments.

You make so many wonderful points, I'll comment on just a couple of them.

So true about needing to try different doctors to find the one right for you / who knows how to do what you need. That goes not just for medical doctors, but also for holistic healers too.

Also, so true that most ob-gyns really seem to have no clue what to tell patients -- it seems to be either "watch and wait" or "time to take out the whole uterus". I remember when I got the "watch and wait" spiel when I first found out I had the fibroids, my reaction was "are you out of your mind? just watch and wait while these suckers grow?!!"

Often I feel that doctors are too specialized but I think your point that delivering babies and dealing with fibroids make up an extremely wide scope of practice. Also most obgyns I have seen seem to have crazy overloaded schedules so no wonder it's hard for them to keep up on everything (that should not be an excuse but it seems to be the reality)

I'm so glad to hear that you found a skilled surgeon and are now rid of the fibroid.

I really really appreciate your positive comments, thank you so much!

I was at the Psych-K person today and one of the affirmations she worked with me on was "I love all parts of my body". Hmm, loving my fibroids is hard to do, but I am trying to recognize that they have some purpose in my life.

Fibroid Shrinker said...

It looks like the software won't let me intersperse my replies with the comments. The last one was to Crista, and this one is to IKW.

Mouth wide open was my reaction too to what the doctor said. On the way home I had to stop at the grocery store, and I spent a tremendous amount of time wandering around aimlessly (not my usual mode!), I was in such shock.

But I think you are right it could be a move in the right direction for baby-making which is a priority. Last night, on the National Uterine Fibroids Foundation listserv one woman told the heartbreaking story of losing her twins at 25 weeks due to early labor caused by her fibroids. She had been told, like me, that the fibroids were small enough not to be a problem, but it turned out that was not the case. So, better to be really truly rid of them I am thinking.

Yes I really recommend the Spirit Babies book. I'm so glad I scheduled a call with Walter too.

Best wishes for the success of your myomectomy!

Fibroid Shrinker said...

To Anonymous,
Thank you. Indeed it does seem that no one can agree on anything!
And indeed, time is of the essence. At some point one has to consider more drastic options...good luck to you too!

Anonymous said...

Hi,
Just wanted to say I stumbled across your blog while googling Walter Makichen--I have had a consult with him too and he was dead on with describing my personality as well. He is the real deal and a very caring and comforting person. Good luck to you!

Fibroid Shrinker said...

Thanks so much. So glad to hear you had a good experience with Walter too. He is indeed the real deal!

Lynette said...

Hi there, I stumbled upon your very helpful blog yesterday while I was Googling Bak Foong pills [Eu Yan Sang]. I've been having really painful periods for the past few months and I was diagnosed with fibroids too in August last year. And like you and many other women, I'd like to try the natural approach first. Surgery would be a last resort. Anyhow, I tried to look for references to Bak Foong pills here but didn't find it. I'm just curious if your TCM doctor/acupuncturist ever recommended this particular med for you at some point. I tried it the first time yesterday and last night, I felt some discomfort in my lower abdomen [like a mild onset of diarrhea]. I still am having discomfort although much milder now. I've been trying to Google information about the med [round black pills that must be diluted in hot water] but can't find anything satisfactory. I'm also planning on seeing a TCM doctor soon. Anyhow, Id' appreciate any insights and I hope your pending [?] surgery is not too stressful for you. Sending some healing light your way!

Fibroid Shrinker said...

Thanks for the kind words.
I've never taken Bak Foong pills but I seem to recall one reader of this blog mentioning them in a comment.
I found this interesting article that talks about them though, sounds like good stuff!
http://www.time.com/time/asia/features/asian_medicine/cover3.html
Did you get it as a prescription from an acupuncturist? That's the best way to be sure it's a good match for you...

Lynette said...

No, actually it was a friend who recommended the Bak Foong pills to me for my painful periods and while on a stopover at the Hong Kong airport, I found a Chinese herbal store where they were selling the medicine. But yes, it would be safer if I consult a TCM doctor first for this. I wouldn't want to risk it. I will keep following your blog though for more informative tips. And thanks very much for the link.. really appreciate your help. Thanks and have a good, healthy day to you, Fibroid Shrinker :)

Tina said...

Hi, I stumbled upon your blog today and it brought tears to my eyes. Oddly enough, because I felt a sense hope and sadness. I was diagnosed with severe anemia in my early 20s as I became increasingly ill around my period. At the age of 24 I was diagnosed with fibroids. At 25 i opted for surgery (hysteroscopic myomectomy) due to excess/continuous blood loss. Today, 11 months after my surgery and at the age of 26, my gyn performed 2 ultrasounds (external ultrasound and a saline infusion sonography) discovering that 2cm submucosal had grown back.

My doctor pressures me none stop to agree on implanting an IUD after failed attempts with the Depo shot and birth control pills to control my bleeding. She was shocked at how quickly the fibroid returned, even after a diet and lifestyle change for a woman of my age. Frankly, Im fed up with pumping so many chemicals into my body. I want to get to the root of the problem, the fibroids.

As stated before, I feel a sense of happiness to know that I am not alone. To know that other women have successfully treated fibroids and those with experience to combat the situation. At this point in my life, I have MANY friends getting married and having babies. I failed at my attempt to conceive naturally 2 years ago and refused to visit an infertility doctor out of fear. Dealing with fibroids put very very heavy strain on my romantic relationships, usually ending them. It seems that having fibroids has debilitated me both physically, emotionally and socially. I find it hard to date, especially when the conversation turns to having children or why my weight (and stomach size) continuously fluctuates.

Im hopeful because im still in the early stages. I plan to attack the fibroids naturally during the first year along with regular visits to my gyn. I have yet to try any herbs or any detox program. I'm hopeful and in constant prayer that I will be healthy again and able to bear children without any complications. I read about the Healing Fibroids: A Doctor's Guide to a Natural Cure in your blog. Any additional info would be greatly appreciated as i begin my journey.

Fibroid Shrinker said...

Thanks so much for writing. Wow, that is a lot to have to be dealing with at your age! And how horrible to have one of them growing back! I hate these damn fibroids and what they do to people.

I do recommend trying detox, and seeing an acupuncturist who specializes in fertility (as that is the kind who knows the most about the reproductive system). Your new one is only 2 cm it should be shrinkable, besides it would be good to get to the bottom of what is happening rather than use the western style zap it with an IUI approach.

I do recommend the Healing Fibroids book, as well as The Infertility Cure and a new one I am reading The Fertility Diet by Sarah Dobbyn. Energy Medicine for Women is also fabulous. Also I hope what I have on this site is a resource, please browse through past posts.

Best wishes to you, good luck, and please keep in touch!