How I decided to have a myo

You know, having to go through the d&c to terminate my failed pregnancy helped me to get to this place mentally. The nurses and doctors wanted to help me and they didn't want me to have pain or discomfort. And then all the post myo success stories on the NUFF boards make me feel more confident as well.

Since I'm 34 and a good ways away from menopause I really should get this lump out of me now -- it isn't going to get any smaller on its own, though chinese medicine did seem to be working but not fast enough. My fibroid has been an angel of change for me so far, I had to reconsider a lot over the past two years from what I ate, to how I worked, to how much I excercised or visited with friends. I think I'm in a much better position health-wise now and hope to stave off any other diseases that might have met me along my previous life path. I'm an Cancer, I'm allowed to be sentimental :)

Thanks again and good luck to all my fellow myo compatriots in the next few weeks. I'm going to buy my purple (fuzzy) socks of courage this weekend and help get the house cleaned up and in order so I won't have to do much post surgery. My dog Lula and my cat Seymour are ready and waiting to keep me company during my recuperation.

What should I do?

So I still have retained POC (products of conception) from my miscarriage in July. It is likely that my fibroid has contributed to this situation by not allowing my uterus to contract as well as it might (8x10cm intramural fibroid, uterus wrapped around fibroid). My RE wants to go in with a hysteroscope to aid in the removal of the 2x3cm piece of tissue in my endometrium -- the fibroid doesn't allow for a very clear image of what is there.

She mentioned that while I'm under she could remove my fibroid as well. It isn't the largest fibroid that she's operated on, but it isn't small either. She thinks that if I have the surgery done now I should be all right to travel to Ecuador for Christmas -- about 6 weeks post-op -- to go on a birding tour.

My fibroid hasn't shrunk at all since August, though it is smaller than the largest measurement right before my d&c of 9x11x11cm or so. On the day I got my BFP it measured 6.5x7 -- so it is now twice as large and I'm feeling it everyday.

Tthis RE does surgery twice a week only and I like her, she's been practicing since 1983 and does on average one myo a month -- but she's regularly doing reproductive surgeries. I'm feeling pretty good about her and she said that she would consider my desire for a vaginal birth as she did the surgery.

If you were going to be put under right now for another procedure would you opt to have your large fibroid removed as well?

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.

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.

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.

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?