Pregnancy and infant loss in the news

I just wanted to make note of an observation I had while watching the news today. Both the case of the murder-kidnapping of that fetus as well as a big arson case in Maryland have suspects who are dealing with pregnancy and infant loss. It sort of points out to me the great anger, grief and confusion that losing babies causes; and the lack of something to help people cope with their loss.

The suspect in the arson lost a baby at the beginning of the year and said something to authorities that the person who lit the fires likely had suffered a great loss. If it is true he did this and the two instances are related I can only imagine how hard the past year has been for him -- not excusing the actions though.

And the murder-kidnapping suspect, going from murder to parading the infant around the next day. The fact that her family didn't know it wasn't hers, that she had a pg loss and then was able to convince them that it must have been a mistake...while what she did was awful and macabre, it is just an extreme action paralling the extreme confusion and grief that pregnancy loss can do. It's almost like the very bad and black thoughts overtook her.

It seems we need to do more to help support people experiencing pregnancy and infant loss -- yeah there are crazy people out there, but if there was a better understanding of what people go through when they experience this kind of loss maybe there will be less anger, hurt and depression and more healing.

Perhaps I'm rambling, I just needed to get that out.

Working on fertility and fibroid prevention post myo

I had acupuncture treatment for most of the year up until my surgery and I expect to start treatment again in the new year. Through my weekly appointments I learned a lot about symptoms and sensations and was amazed as my acupuncturist was able to move things around -- such as getting rid of a sore throat in seconds, dissipating heat and pain in my abdomen within minutes, adding heat to my lower back that lasted for days when I was feeling cold and watery with some hormonal disturbance related to my miscarriage.

I needed a break from medical care for a little while, with having retained tissue from my miscarriage I was so out of whack and I was starting to feel like a perennial patient -- like it was more normal to be unhealthy than healthy so I needed some time to just be me. Anyway, I've been noticing little symptoms of hormonal imbalance over the past couple weeks so I know that my body isn't "normal" yet. My basel temp has been a little high, I have pain associated with my gall bladder channel, I have light night sweats, vaginal dryness, acne, low back pain and my body is telling me not to eat sugar right now. I feel so bad that my body is struggling still but I'll continue to take care of myself and in January after I return from vacation I'll go see my acupuncturist again.

I just bought The Infertility Cure by Randine Lewis, a fertility expert who specializes in acupuncture and Chinese Medicine. It is so interesting to read, adding to my own experience with acupuncture treatment. Reading it I see more examples of symptoms of imbalance in my body, some of them part of the pattern of imbalance I have had over the course of my treatment (liver, kidney and spleen Qi stagnation and Yang Qi stagnation). While these things will interfere with conception when I'm ready to try to concieve again, they also are part of the pattern of imbalance that contributed to my fibroid formation. It only increases my resolve to make changes and adjustments to try to be as healthy as possible to try to counteract the pattern to try to prevent future fibroids from forming. I've already made changes since my fibroid was discovered, I'll just have to keep working equally as hard moving forward.

I went to dance class today.

My doc said after 6 weeks I could return to normal activity; my six weeks were up yesterday. My body started complaining a couple days ago about wanting some exercise, I started getting achy -- amazing that it took that long. I ran down the block and back with my dog -- I can move again.

So this morning I knew from the aches and pains that I still needed more movement, to help get my energy flowing again. I went to a beginning modern dance class -- I've been studying modern dance since I was 5 so this wasn't something far-fetched. Anyway, as part of the warm-up we do some abdominal work, not sit-ups but lots of moving and stretching and small crunches and contractions. I got through that, taking a break for parts of it. Then we did footwork, brushes, tendus, degagés, passés (for those of you who have studied ballet or modern).

After about a half hour my fascia had enough stretching and was complaining so I stopped; my legs and arms and back were fine though perhaps a little weak. I've been kinda tired since, though I was run down before then as well -- I think it is my anemia from all my bleeding. I remembered how someone asked if they could do yoga a couple weeks ago, and how interesting it was to finally be the one getting to move again myself. My advice is take it slow, stretch a lot, listen to your body and stop if you need to. I'm going to keep up the exercise over the next few weeks and when I return from vacation I'll try to hit dance class again and I bet I'll be that much stronger.

You think you have a plan...

When I was younger I thought I would start having children when I was 28 but then that year my partner had his vasectomy reversal. We thought we would wait until I was 30 or so before we'd start trying, then 2000 rolled around and his S/A wasn't good. We stopped using protection and nothing happened, but we weren't ready for it then anyway. Then there was 31, and 32, we'd be ready by then. Well I can't say I really felt ready when we started TTC in 2002, and only later did we find out that my body wasn't really ready yet either -- at the same time I was diagnosed with my fibroid I was told I had bacterial vaginosis. A few weeks later my naturopath told me that not only was I anemic but that I really needed to do something about it. This all in spite of regular cycles -- well at least my pituitary and ovaries still work. Then 2003 was all about research into fibroids and hormones -- and not having surgery and crying after a lot of doctor's appointments. 2004, it started out hopeless, then gradually things started to change. We had treatment planned and then we even got pg on our own -- what a surprise. This second half of the year has been about letting go, grieving, healing, changing, transformation, and recovery.

I'm 34 now and I'll be 35 in six months time. I wonder where 2005 will take me, but I'm sure that I can't possibly predict.

Six Weeks -- Feeling Pretty Fine

I haven't had my laptop so I haven't been able to upload any photos in a week. I'll have some soon of my healing belly. I don't think you can see much change on the outside but I can definately feel the difference on the inside. I'm a lot less sore now and I have more energy.

My cramps were awful last week, I thought I was going to die and I had spotting which isn't normal for me. My period came last week, over a week late, and it wasn't normal. I had more hemorrhaging for several days and felt very light-headed. It doesn't even take that much blood loss for me to feel this way. I was anemic to start with, something I've been working on since my surgery by taking iron supplements. I think my uterus might have had a hard time contracting properly and maybe it was still adjusting to all the recent changes.

I looks like things are getting back into order though, all biological signs are A-OK now. My incision is still sensitive but I don't have to wear the granny knickers anymore and I can comfortably sleep on my belly at night. Wednesday morning my body told me it was time to exercise again. I've been aching for the first time since my surgery, the kind of aches you get when you don't exercise for a while. I've been trying to pick it up and do more physical activity including a little jogging down the street and push-ups.

We babysat my 26 month old nephew at the beginning of the week and the kid had us running around for hours. My partner says that he's not sure he wants one now, that his life will be certainly over if he has to do that every night. I don't think he is serious, he would love a baby if we had one and be awesome about it. I told him we can get an au pair, though I don't know that we really would do that. We'll figure it out when the time comes.

My partner also noticed the other day that for the first time in a couple years there is this lightness to my person, some weight being lifted. I think it is from the fibroid mostly. It was a big psychological burden on me to know that I wasn't well and that I had to manage a condition that may or may not affect my fertility. My partner said that now I know I can get pregnant and now that the fibroid is gone things are looking a lot easier. Let's hope so.

It will be another 8 weeks or so until we're able to start trying to conceive. I'll be away on vacation for part of that time and then I'm going to try to take some art classes in the new year to help keep my mind off of it all.

Why we have bleeding problems... Links/References

At the beginning of the year I posted some links about dysfunctional uterine bleeding (DUB) and one list member (on the fibroid group) asked if I would look into why women tend to have flooding first thing in the morning. Most of you probably know this phenomena whether or not you have DUB -- its when you are sound asleep and suddenly awaken because a big gush of blood is coming out all at once and you run to the bathroom if you can though sometimes you wake up too late and the sheets, your underwear and your nightclothes all need washing.

I wish I had a hematologist to confer with but doctors tend to keep to themselves or just don't overlap with my software oriented social network. I've got a few references here some mechanical and some physiological to causes for bleeding. Since excess estrogen/low progesterone is one theory of part of the cause of fibroids it is interesting to see that the same conditions also set the stage for bleeding problems. Also, I couldn't find references to early morning menstrual bleeding but there was a reference to there being early morning changes in the blood which might be related, at least in action.

"Most very heavy menstrual bleeding does not mean that a woman is shedding substantially more endometrium. The endometrial slough is determined by the size of the uterus and the hormonally induced endometrial thickness. The uterus has large blood vessels that come through the myometrium to feed and supply the endometrium. Really heavy bleeding occurs when the uterine muscle cannot do its job of contracting around these vessels. This is important because after the endometrium is passed out, the basilis layer may be very thin, which could expose the raw muscle surface. This means that the large
vessels can pump blood directly into the uterine cavity if the muscle cannot contract well."
http://www.centerforendo.com/news/adenomyosis/adenomyosis.htm

"what frequently happens when excessive amounts of estrogen are secreted. Parts of the endometrium outgrow their blood supply and are discarded but not simultaneously. While the one part recovers another part is discarded and the bleeding continue for prolonged periods. In the illustrations the bleeding might decrease while the one area heals before the the other area starts bleeding."

"Fibroids usually cause excessive cyclic bleeding. The amount of blood loss is increased and /or the duration of the bleeding is increased. The mechanism is probably due to enlargement of the womb, thus increasing the surface area of the endometrium."
http://www.femalehealthmadesimple.com/FileTwelveFinal.html

"The plasminogen (fibrinolytic) system (Figure 1 ) comprises an inactive proenzyme, plasminogen, that can be converted to the active enzyme, plasmin, that degrades fibrin and that activates matrix metalloproteinases (MMPs), which in turn degrade extracellular matrix(ECM)"
"There is a clear correlation between the circadian variation in the time of onset of myocardial infarction, with the highest incidence at about 8 a.m., and the circadian rhythm of plasma PAI-1 activity, which is also highest early in the morning."
http://www.asheducationbook.org/cgi/content/full/2001/1/1

"PGE2 --> vasodilation; PGF2a --> vasoconstriction; progesterone is necessary to increase ararchidonic acid, the precursor to PGF2a. With decreased progesterone there is a decreased PGF2a/PGE2 ratio. Since vasoconstriction is promoted by PGF2a, which is less abundant due to the decrease in progesterone, vasodilation results thereby promoting AUB [Abnormal Uterine Bleeding]"
http://www.unmc.edu/Olson/PowerPoint/36 (no longer available)

4+ Weeks Post Myo

Another report on how I'm recovering -- hopefully this helps people who are considering the procedure.

I retured to work part-time one week ago. I got tired and sore by the afternoon and was sure to go home. During the rest of the week I noticed that day by day I had more stamina and less pain -- it seems that the pain picks up if my body needs a rest. I was able to work almost a full day on Friday without any problem and then my uterus where I had the incision started aching so I headed home. In contrast, my first shopping trip 8 days post-op I felt lightheaded and really tired after a couple hours out of the house. My second shopping trip 18 days post op I was out for a few hours on my own and got really tired and flushed feeling -- that's when you know you need to head home.

Saturday I took it easy, just doing light housework and cooking plus lots of knitting. Yesterday I went shopping for several hours and it was only after I tried on a bunch of different pants (after having been out for some time) that I started feeling achy. I handed over the items I was going to purchase to my partner to carry and then went home. I was feeling a little tired but I wanted to get a tree for Christmas so I drove out to do that and just had the staff carry and load it for me in to the car. I took a rest when I got home and finished stringing popcorn for the tree and then after making dinner I decorated the tree and vacuumed downstairs (I had my partner bring the vacuum downstairs for me).

Every day I'm feeling more and more myself. The pain from the adhesions behind my incision in my skin seem to be breaking up a little bit and I think my skin might be adapting/growing to that situation as well. I still haven't had my period but hopefully this week. When I had my d&c for my miscarriage in July it took 50 days to get my period, I think my body tends to take it slowly and get everything back in alignment before it continues.

I had sex once so far and it wasn't bad at all -- we did it spooning, on our sides which takes all pressure off of my belly. The only reason we've only had the one go is because our sleep schedules are different so I'm tired when he's just getting interested (sound familiar anyone?).

I'm all stuck together

I try to be good and take care of myself during my recouperation from surgery and !@#$ it seems like my skin has healed by bonding itself to my fascia. A couple people have told me this will go away, another one says that she is still dealing with this leftover from surgery. I'm so upset about it because there is this pulling sensation when I move. I need to be able to move without pain, I'm a dancer. Why didn't anyone tell me this was a possiblity? I'm so bothered by it I want to hurt myself.

I'm going to have to try some serious deep tissue massage to see if we can clear it out and it is going to be painful. It's going to stay painful unless I do it though. Argh!

14+ days post op

So I had my post-op visit yesterday morning and everything was good, she said I looked great. She said removing my retained POC was very difficult because of the fibroid and that there was no way for my uterus to expel the tissue on its own based on how the fibroid was positioned filling the interior of the uterus. So my prospects for a normal vaginal delivery were probably slim to none since my uterus couldn't contract well, or at least I would have had a complicated delivery. I was sooooo uncomfortable when I was pg with the rapid fibroid growth and the pregnancy having to grow off to the side because that was the only way my uterus would move, next time should be a lot better.

My doc also said that my uterus will be enlarged for a while, shrinking back some but that it would never be the size of a normal unpregnant uterus since the fibroid made the muscle wall have to grow larger. Maybe I'll be extra fertile now though, the interior of my uterus will be one vast space with lots of room for an embryo to settle in.

She said I could remove the steri strips in the shower or bath, I just pulled them off carefully when they were dry, the adhesive was already starting to go. Uncovering the incision though made it burn more, I think this is partly due to my nerves regrowing right now --
they have to cut through some in the skin there and they may or may
not grow back completely. I had to take the 600mg ibuprofen and after an hour that wasn't helping so I took a percocet and it really helped take the edge off the pain. My father said he had that same burning sensation as he healed from his triple by-pass a few years ago. The incision looks great and I don't think that it will show that much at all in a few months.



She agreed that starting trying to conceive (TTC) again in February
sounded like a good idea and that we should try for a few months on
our own before going back for any more fertility consultations. After having way too much medical attention over the past 6 months (due mostly to the pregnancy/miscarriage) and way, way too many blood draws for my liking, now I'm in a holding pattern and it feels so strange to be told that I'm healthy and back on my own. Not that I liked being not well but you do sort of get adapted to fitting in the medical care when things go wrong. Yeah to be healthy again though!

Oh and I guess it was around 11 days post op that I started to feel
more myself and I've been less fatigued and able to do more around
the house, tidying up, cooking, light cleaning, etc.

Recap of my pre- and post-surgical treatment

The day before my surgery I did go for acupuncture. I like my acupuncturist and my body responds well to his treatment. He said that my nervous system was a bit overactive -- but that was to be expected.

I've been taking the arnica since the day of surgery, at least 2 times a day now. I took the phosphorus C the night before, and started on Traumogen (vitamins to aid healing from Thorne) the night before as well. I had no nausea from the anaesthesia, and I only threw up twice, once from the PCA meds and once from the percocet. I've been taking iron with C and Traumogen every day since my operation 2-3 times a day.

I did have some bruising around the incision as I was healing, but that's gone away now, as has most of the swelling. I hope this doesn't freak you out but I've been taking photos of my incision as I'm healing and thought you might be interested.



On day 3 you can see that my belly is very round. Two days later a lot of that swelling has gone away and the bruising showed up. The colors got pretty bright and multicolored by day 7, as bruises often do. By yesterday the bruising is gone and the swelling is mostly just above the incision.

Oh, I've been also doing some Qi Gong breathing, deep breathings to fill my lungs -- at least once a day. And you want to make sure that you stay connected to your uterus after you are out of surgery and think about sending it healing energy -- I guess some people disassociate from their wounded parts sometimes and it interferes with healing. Read this article about Qi Gong and surgery, I found it very interesting.

Medical Qigong Therapy & Surgery

Post op, stay away from cookies, candy -- simple carbs. I found that my body didn't want them anyway. Drink cranberry/pomegranate/grape juices to help prevent a bladder infection.

I also did guided imagery with the help of a CD my fibroid sister Deborah sent me in a care package. I told people about my surgery and asked them to pray for me and send healing thoughts. I also tolds people when and where I would be treated, and when to expect me home with my phone number so people could call. I felt very supported and warm for the days before and after my surgery.

You can get through this too.

Fibroids and pregnancy

Welcome to the club. I've met some women here who have successfully carried babies to term with fibroids in place, with some fibroid growth. I've also heard women report that they have had excrutiating pain from degenerating fibroids and the babies were fine but the pregnancy was rough on the mother. There are also a lot of women who have had miscarriages, which may or many not have to do with their fibroids -- myself included.

Doctors don't really know which fibroids will cause problems and which ones won't -- at least not beyond just normal clinical experience, the studies just haven't been done yet on a lot of topics. Some tiny fibroids can become really large during pregnancy. Large fibroids might experience some growth but not cause too many problems, or vice versas. I learned of one woman recently who had her fibroid removed during a c-section to deliver her baby -- the fibroids and the baby weighed the same. What you want to find out is where is/are the fibroid/s, what type are they (submucosal, intramural, subserosal)

The Babycenter.com fibroid message board has lots of posts from women who are trying to conceive with fibroids in place or post myomectomy (surgery to remove fibroids), as well as women having to deal with fibroids during their pregnancies.

Just because you have fibroids doesn't mean that you can't conceive and carry a healthy child to term, but it can make the journey a little less smooth.

I've posted a bunch of interesting articles about fibroids and fertility in the Links area of the NUFF uterinefibroids message group. Do check them out (subscription required).

Go out to the bookstore and buy: What Your Doctor May Not Tell You About Uterine Fibroids, and Sex, Lies and the Truth About Uterine Fibroids.

Oh, and I would seek the assistance of an RE (reproductive endocrinologist) if you have a diagnosis of uterine fibroids. They are more knowledgeable about hormone imbalances and specialize in fertility issues -- they are ob/gyns with advanced training -- and if you haven't had any luck with well-timed intercourse after a year the you should go for a consult anyway. They might try to push you for surgery and fertility drugs but it is up to you what you want to have done.

What happens when you are having a myo

I'm on bed rest one week and two days post abdominal myo and I'm feeling great. Tired but healing quickly. Since you were curious about the before and after...

Pre-op consult -- they take your blood pressure, weight, check your blood to make sure you aren't anemic and get your blood type if they don't have it on record. You meet with your doc and ask last minute questions and sign a few forms. Sometime you will get to meet with the anesthesiologist at this time but I didn't. They give you instructions on when to stop eating and drinking prior to surgery.

Day of surgery -- check in 2 hours beforehand. I brought knitting to keep my hands busy and mind calm. The hospital seems to make you keep signing forms that say the same thing (whatever). My surgery was delayed by more than an hour so we went home for an hour and I did some last minute housecleaning.

When it is your turn they take you into an area with a gurney and give you a hospital gown to change into. My partner was allowed to be with me until they were ready to take me into the operating room (my doc said -- be sure to ask yours ahead of time about this). They hook you up to an IV and the anesthesiologist asks you questions about your previous experiences with anaesthesia. You have the option of asking for an epidural with sedation if you prefer, it is up to you and the anesthesiologist. I did the general and it was fine. They take your bag and you say goodbye and then they wheel you in to a freezing cold room. They hook you up to a blood pressure cuff and the oxygen monitor (little finger cuff) and then put a blanket over you. The anesthesiologist puts a mask on your face and tells you to breathe in oxygen and the next thing you know you are waking up in recovery.

They keep taking your blood pressure alot post-op and you are groggy and have a hard time opening your eyes. You are hooked up to a PCA, where you are able to dose yourself with painkillers as needed -- don't hold back because staying on top of the pain at first will help you a lot. After about an hour they wheel you to your room. They put some pressure stocking on your legs and some cuffs that compress/decompress automatically to help prevent blood clots. My wound was covered with a bandage so I couldn't see the incision -- thankfully. I had a catheter in for not even a full day, but know that the first pee can be really difficult. The nurse gave me warm water to run over my vagina while on the toilet and that helped get things moving. I recommend drinking unsweetened grape or cranberry juice for a week afterwards to help ward off a urinary tract infection -- it helps prevent bacteria from adhering to the lining of your bladder, etc.

They will have you up and walking less than a day after surgery, take it slow and roll onto your side slightly, then drop your legs off the bed and use those side muscles to lift you up. The first few times you get up will be very awkward and painful. Stay on top of the pain meds and breathe a lot and you will do fine. The pain isn't excruciating, I ranked the worst at 5 on a scale of 1-10 but it was mostly around 3-4.

And then do as I've been advised from other post myo gals -- take it easy and don't push yourself. Even though my incision looks great I can't see my uterus and it has a lot more healing to do than my skin.

Extreme Makeover: Uterus Edition

"We converted this cramped two bedroom bungalow into a special open floor layout and removed some earlier renovations which were gettingin the way…"

So, I'm home from the hospital as of yesterday afternoon and I'm well on my way to a full recovery. I'm really tired still and reading is kind of hard, I just start falling asleep so I'm going to make this post and then you'll probably hear more from me later in the week.

My entire surgical team was comprised of women. From the two REs and the anesthesiologist to the nursing team – how very cool to know that competent women were working hard to help heal me. I wore my purple fuzzy socks of courage and even got compliments on them from the nurses. I opted for the general anesthesia and other than a sore throat on Saturday it was totally fine.

It took as long to remove the remaining tissue from my miscarriage as it did to remove my fibroid, but already my bleeding has slowed. I had been bleeding for the 4 weeks prior to my surgery and was a little anemic as a result. They didn't need to give me a transfusion and they commented on how little blood was lost – I went for an acupuncture treatment the day before and that can help lessen blood loss. One of the REs said she was a firm believer in acupuncture and wasn't surprised that it would help out.

The fibroid made it impossible to use the hysteroscope to view the retained tissue but they believe they got it all out of there. My fibroid was described as being the size of a grapefruit, and was removed via a single incision about 3 or so inches long. It was growing right up against the endometrium, but it was not engaged withthe endometrium – what a blessing. So, while they had to cut all the way through the muscle wall to get it out there was no disturbance of the interior of my uterus so I've got the most surface area possible to help catch fertilized eggs.

Over the course of the two procedures my bladder was manipulated and traumatized quite a bit. Between that and the catheter the most difficult part so far has been trying to urinate; I have to sit for along time and try to relax and let got of any part I can think of. I also had blood tinged urine but the doctors said it was as a resultof the trauma. I'm drinking cranberry juice and lots of water and am under strict orders to urinate every 2 hours. They weren't sure if my bladder was enlarged from the fibroid or now, or if I'm just one of those women who can't empty her bladder completely (it happens they say) but we sure as heck don't want me to have a bladder infection so I'm going to stay on top of it.

My incision on my swollen belly is a good 5 inches long, I imagine that it will decrease over time. The gum, the walking, the sleeping mask, ear plugs, robe, slippers, granny knickers and my own pads all came in handy. The doctors and nursing staff were amazed at how well prepared I was for the hospital – I gave the fibroid ladies all the credit. They are truly the best group of women on the web.

My myomectomy scar - Day 3


Oh, and the baby making department… my RE said that the way the fibroid was positioned that she didn't think that I would have beenable to carry to term even if we didn't have a blighted ovum and that she expected that I would have continued having miscarriages. She thinks we have a great chance now and said we could try as soon as two months from now, though I think we will wait until February is over.

My partner is exhausted; I think the emotional stress of the weekend has gotten to him. He held me in the hallway last night and hugged me and said he felt so relieved that it was all done now. Poor guy; he was nice and helped watch over me the first hours after my surgery on Friday, massaging my feet and making sure they got me situated into a good room.

So, I'm feeling all right and my abs aren't too sore – they didn't clamp me, just pushed and pulled them a bit. Other than the incision site being sore and my uterus as well in the two spots they worked the rest of my body feels fine – I'm just incredible tired.

I can't believe that I'm through with the worst of it and now I've just got to heal. No regrets on my part for delaying the surgery, I know it was the right thing for me. Thank you for your prayers on Friday – I felt like I was in a warm cloud, so relaxed and comforted the entire time.

[See also: Preparing for surgery posts]

"We can rebuild her. We have the technology.
We have the capability to make the world's first Bionic uterus.
This uterus will be that womb. Better than she was before.
Better . . . stronger . . . more fertile."

Fibroid leaving on a metal tray (sung to the tune of Leaving on an Airplane)

So my bag is packed, I'm ready to go
I'm sitting here, making another post
Already I'm looking forward to the change
So cut me and dissect me
Tell me that how much better I'll be
Help me get back on the fertility road

My fibroid is leaving on a metal tray
Don't expect to see it ever again
Oh 'Roid its time to go.

So, anyway... Friday is my big day, I've got gum and granny knickers, a maternity belt, arnice pellets, purple socks of courage etc., etc. -- all courtesy of the generous sharing of info by the fibroid ladies on the NUFF group. I'm feeling pretty relaxed and this will all be over and I'll be on my way to recovery within the next 24 hours.

I don't need to take phosphosoda or any laxative so that is good. And my doc thinks the d&C and myo should only take 2 hours. My RE will be assisted by another RE, a fellow, so I'm in good hands. I check in at the hospital at 1:30 tomorrow and the surgery is scheduled for 3:30.

Please send good thoughts and prayers if you can tomorrow.

Definitions of (girlie) bleeding

In the time I've hung out online with women trying to get pregnant I've had the chance to learn more of the nuances of spotting. I've heard women say that if there is any blood contained in your cervical fluid they they considered it spotting. At the end of your period though it it more residual flow, I have that too. This type of spotting tend to be brownish.

[added in this article link 2/4/06]
Menstrual Mysteries -- more info about determining problems with your menses based on quantity.

Spotting is bleeding outside of your period. I've had spotting this month and it just continued as red coloration to my cervical fluid, this is dysfunctional uterine bleeding related to my miscarriage.

Spotting also is the first sign of an impending period for many women. I'm pretty sure that this is light pinkish, with maybe a little brown as the blood oxidizes.

Heavy menstrual flow is when you need to use more than one pad an hour, though I consider this really heavy, medically referred to as Menorrhagia. Because your body is bleeding so much the chemicals that are supposed to keep the flow fluid can't work as well and you do get some coagulation -- the clots, or liver-like lumps. I find that when I have clotting I tend to get really nauseous kinda intense cramping feelings -- I think this might be the clot passing through the cervix -- when I miscarried there was a similarity to the sensation though the miscarriage was more painful in my opinion.

My previous period was unusual, again it seemed to be related to my body trying to get rid of retained tissue from my miscarriage. I had bleeding for 3-4 days that was bright red and had no clots. On toilet tissue it looked like I was dabbing at a wound, it was plain blood and without the mucus component of a normal menstrual flow. I consider this abnormal for me, though women with fibroids contacting the endometrium might experience this as a frequent event.

"Women lose between 20 and 80 cc's (1-2 ounces) of blood during a normal period." (hah! right)
http://www.fwhc.org/health/moon.htm

This page includes diagrams and links to more information about normal/abnormal menstrual bleeding and includes a reference to fibroids (scroll down the page)
MENSTRUAL ABNORMALITIES

I found a lot of mention of the fact that doctors often underestimate women's blood flows and that there is a pictorial chart (see link below) that women used in one study that was a clearer indictator of blood loss. I'm sure many of us have experienced this underestimate by docs -- perhaps if those of us with heavy periods would catch the blood that pours out of us when we go to the toilet and bring it to the doctor's office they might be able to see what we go through.

The Medical Algorithms Project has a copy of the The Pictorial Blood Loss Assessment Chart (PBAC), an excel spreadsheet that helps calculate blood loss
http://www.medal.org/

So if you have the fibroid out, can you deliver the old-fashioned way?

In all that I've read the horizontal vs. vertical incision hasn't been an issue of health for the most part, it is aesthetic (someone please correct me if I'm wrong about this). It would be great if your doc could do a bikini incision, and maybe to do the ovarian surgery laparoscopically but doctors have to make that call. Since you have been experiencing serious bleeding problems it is pretty certain that your fibroid has contact with the endometrium and your incision will go the full thickness of the uterine wall.

Since I've been researching the possibilities of vaginal delivery post myo I thought I would share some of the other information I've collected related to pregnancy post myo....

With incisions into the uterine wall (especially those that go the full thickness) there is a greater risk of uterine rupture during pregnancy it seems, even if you don't go through labor, but it is a very RARE event. I will add the exception in cases of laparoscopic removal of fibroids because they often don't suture the uterus as well through that procedure -- though this is likely dependant on the size, type and position of the fibroids being removed as well as the skill of the surgeon. You should ask your doctor to try to preserve as much of the myometrium (muscular wall of the uterus) outside of the endometrium as possible and also to make sure that they are going to stitch up the uterus wall in more than one layer -- to help retain integrity of the wall and to reduce the risk of adhesions as well.

"The chance of postoperative uterine rupture increases with pregnancy; the rate reported is five percent."
http://www.uterine-fibroid-treatment.com/html/myomectomy.php3
(note this is across all types of myos - lap and abdominal)

Discuss rupture risk with myomectomy patients - Uterine Rupture in
Pregnancy
http://www.findarticles.com/p/articles/mi_m0CYD/is_20_37/ai_93531937

Pregnancy outcome and deliveries following laparoscopic myomectomy
http://humrep.oupjournals.org/cgi/content/abstract/15/4/869

Other risks in pregnancy post myo include placenta acreta and of course growth of new fibroids (boo hiss!):

"Placenta accreta is a disorder in which all or part of the placental villi are in direct contact with the myometrium and are anchored to the muscle fibers rather than to decidual cells. It is attributed to lack of decidua beneath the placenta, which allows placental villi to invade the uterine wall. Risk factors include old cesarean section scars, fibroids, prior myomectomy, and uterine malformations. Clinically, placenta accreta presents as a failure of the placenta to separate spontaneously from the uterus after the birth of the child."
From: http://www.neonatology.org/syllabus/placenta.html (scroll down for reference)

Many women undergoing laparotomy (abdominal myo surgery) will be advised against attempting labor and will be steered towards c-section due to a greater change of uterine rupture at the scar site. Here are some quotes and links you might find informative, related to VBAC (vaginal birth after cesarian, being a close cousin to delivery post myo) and pregnancy delivery post- myo.

"The type of uterine incision made at the previous cesarean section is important in evaluating suitability for a VBAC. The scar visible on the skin does not necessarily predict what type of uterine incision might be found underneath. Where in the uterus the incision was made affects its strength and integrity after healing. The upper part of the uterus is composed of a different type of tissue than the lower uterine segment and cervix. The fundus, together with the upper three-quarters of the uterus, is composed of a thick, muscular tissue that does not heal with a very durable scar, while the lower uterine segment is composed of a fibroelastic tissue that heals quite well and is more flexible and elastic when stretched after healing. Virtually any scar is weaker than the surrounding native tissue (like the old episiotomy scar that springs open during the most gentle birth). Usually the forces of labor will dilate a ripe cervix but labor will open the path of least resistance, which in a few cases will be the previous uterine incision. In addition, any incision that extends into the muscular portion of the uterus is much more vulnerable to disruption in a subsequent pregnancy and labor because of the poorer integrity of scars in the muscle. A low transverse, or low cervical, incision is the preferred uterine incision in any VBAC"
from: A VBAC Primer: Technical Issues for Midwives
http://www.midwiferytoday.com/articles/vbacprimer.asp

"Among the 21 pregnancies which resulted in live births, 8 (38%) were delivered by Caesarean Section (one case because of fetal distress, two cases because of delay in progress of labour, three cases because the uterine incision involved the whole thickness of the uterine wall, and two cases due to patient request), and the remaining 13 (62%) had vaginal delivery. There were no instances of premature labour (<37 weeks), preterm rupture of membranes, placental abruption, intrauterine growth retardation, scar rupture or post-partum haemorrhage."
from: Myomectomy: a retrospective study to examine reproductive performance before and after surgery
T.C. Li1, R. Mortimer and I.D. Cooke
http://humrep.oupjournals.org/cgi/content/full/14/7/1735

Doppler Sonographic Evaluation of the Vascularity of the Myomectomy
Authors: Alfonso Rossetti M.D., Ornella Sizzi M.D., Giuseppe Florio M.D., Giulietta Tancredi M.D., Pierluigi Paparella M.D., Salvatore Mancuso M.D.
http://www.thetrocar.net/view.asp?ID=2
(Talks in more detail about how the uterus heals and why there is a risk of rupture sometimes)

UTERINE RUPTURE AND VBAC
http://hometown.aol.com/melissaem1/myhomepage/baby.html
(VBAC stands for vaginal birth after caesarean)

Meditatations

Most of the alternative medical practitioners have recommended meditation to me and it is refererenced in a lot of information about infertility as well as for fibroids. Here are some links to info that I've found along the way.

MEDITATION

Anji - highly praised relaxation CDs
http://www.anjionline.com/

Guided Imagery
http://www.guidedimageryinc.com/guided.html

What is Guided Imagery?
http://www.healthjourneys.com/what_is_guided_imagery.asp

Learning Meditation - Meditation Room
http://www.learningmeditation.com/room.htm

Cultivating Positive Emotions to Optimize Health and Well-Being
http://journals.apa.org/prevention/volume3/pre0030001a.html


SELF HYPNOSIS

Hypnosis Downloads
http://www.hypnosisdownloads.com/
Low cost MP3 files you can use to do self-hypnosis. My friend recommended this site to me.


LABRINTH - Walking Meditation
A labrinth is a type of maze that you walk for medidation. I found that if I walked and thought about a particular thing, like my fibroid or my miscarriage, my mind would show me truths and I could release fear and accept hope. Here are a couple of links to learn more about them:

The Labrinths of Grace Cathedral
http://www.gracecathedral.org/labyrinth/

Worldwide Labrinth Locator
http://wwll.veriditas.labyrinthsociety.org/



QI GONG - Chinese Meditation/Movement
Qi Gong (pronounced chee gong) was my real favorite while I was on my health spa retreat, the thing I did every day except for the one day where the instructor had off. It was amazing and helped me feel open, relaxed, stronger, and peaceful. I had never done it before but I could completely feel the energy flowing through my body on the first time. It also helps you to open up and use the whole of your lungs in a way like I've never felt before -- most of us do only shallow breathing normally. What was even cooler was that I found out that the sequence we were doing was developed by a buddhist pristess named Kwan Yin and that she is also a goddess of fertility in Buddhism. The thing that was most amazing about it was that while doing these slow flowing, graceful movements my body was telling me to keep doing them and it would help with my fibroid -- this was days before I heard about what Kwan Yin was.

The Mission of Qigong
http://www.shengzhen.org/the_mission_of_qigong.htm

Kwan Yin
http://www.crystalinks.com/kwanyin.html

About Kwan Yin and images of statues
http://www.siamese-dream.com/page/siam1/CTGY/Kuan-Yin-Statues

I didn't feel like I was praying to another religion, I felt like I was tapping into the energy of the universe. It was amazing. There is a book on the shenzhen.org site, also available through Amazon that has all of the movements and descriptions of what they are for.


Dr Northrup's site has a bunch of different audio/video materials for sale that might be of interest as well:
http://www.drnorthrup.com/health_store-cr-video.php

The HealingFromFibroidsNaturally Yahoo Group also has lots of information about alternative treatments for uterine fibroids, you might look there as well:
http://health.groups.yahoo.com/group/HealingForFibroidsNaturally

Preparing for surgery with homeopathy/naturopathy

I was directed by my naturopath to take phosphorus c, a homeopathic remedy, prior to having the surgery to help my body with nausea from the anaesthesia.

Homeopathic arnica was advised to help deal with the swelling and bruising. I am supposed to start taking this several days beforehand and several friends swear by it.

She also recommended Rescue Remedy from Bach's Remedies, flower essences, to help deal with the stress prior to the surgery. And Gelsemium 30c, 2 pellets as needed for anticipatory anxiety.

These "meds" are at worst sugar pills and quackery, at best they work wonders. They should not interfere with the procedure or anaesthesia and if you believe they will work then placebo affect or not they will provide you with some relief. I think I'll give them a go since I've got nothing to lose.

I will also be taking Traumogen, a vitamin supplement that helps aid the body with nutrients that aid in healing tissue.

Here are some links about natural medicine and surgery to check out:

Homeopathy and Surgery
http://www.drfeder.com/general-health/healing-surgery.htm

Surgery Recovery Program
http://www.naturodoc.com/library/surgery/surg_recovery.htm

Laparoscopy - how to prepare for your surgery
http://www.endo-resolved.com/laparoscopy_advice.html

Is Arnica montana safe to take after plastic surgery?
http://www.eclecticphysician.com/archive.php?action=Nbr&Nbr=235

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.

Watch a myomectomy surgery or UFE procedure online

You know you are obsessed with learning about all the procedures when you watch videos of medical procedures for their entirety. I liked these webcast and if any of you are interested in seeing what happens during a myomectomy or UFE and you can deal with watching surgery, I encourage you to check it out.

Replay of: Abdominal Myomectomy-
A Treatment for the Removal of Fibroids
http://www.or-live.com/lich/1190/

Dr West's site has some video clips of myo surgery as well (there is
a link in the blue box to see images and clips)
http://www.manhattanfibroidassociates.com/

Here's the link to the Thomas Jefferson University Hospital doing an
embolization producedure (UAE/UFE)
http://www.or-live.com/jeffersonhospital/1140/

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?

Contribute $ to fibroid research/ what do we need studied?

So what if you want to help give money to support firbroid research? Here are some ideas based on my research.

Brigham and Women's Hospital Fibroid Research Center is a possibility, they are doing the sister study and many others -- exciting stuff. I gave money last year to a specific researcher at the University of Toronto, Galene Pron, Ph.D., who is studying fibroid embolization and fertility.

I did a search on Yahoo of the words "fibroid research" and got some interesting results as well. You also can search through the PubMed site or anywhere online and see what research has been done and contact the researchers directly if they provide email addresses.

Also the March of Dimes is doing a push again premature delivery of infants but they aren't talking about fibroids. We might be able to help drive the point home by sending comments and cash at them.

Oh, by the way, this reminds me that I was in touch with the Women's Clinical Research Center here in Seattle and suggested some study ideas to them. They evidently are only doing pharmaceutical industry funded studies which irked me. Here is a list of the things I sent to them:

What happens to fibroids after menopause? Anecdotally they are supposed to shrink but there is no research evidence to refer to.

I would love to see a study that would help get women in for a routine ultrasound at age 25 and then 30-32 to help catch fibroids early since pelvic exams are often useless.

How about diet/dietary changes and how that affects growth? I think that stress and restrictive eating contributed to my fibroid growth.

What hormonal profiles and body types are linked with fibroid growth.

What about pain from fibroids – I have it but it isn't my fibroid that is hurting me, it is adjacent. I'd love to see imaging that would demonstrate what exactly is hurting. Lots of doctors dismiss this type of pain.

What about a comparison of waiting until menopause for symptoms to recede versus having a hysterectomy on quality of life.

In reading this study report, Myomectomy: a retrospective study to examine reproductive performance before and after surgery (http://humrep.oupjournals.org/cgi/content/full/14/7/1735),
I noted the following mentions of incomplete research
on the topic:

"Many reports have considered intramural fibroids and subserosal fibroids as a single group, and little attempt has been made to analyse the two groups separately. However, it is possible that the impact of intramural fibroids on reproductive outcome is quite different to that of subserosal fibroids."

"few studies have considered the reproductive performance prior to myomectomy, including the presence of infertility and miscarriage, and hence have not examined how myomectomy alters the reproductive performance."

"there are no prospective data to suggest whether or not intramural or subserosal fibroids increase the rate of pregnancy loss, and to what extent they are the cause of recurrent miscarriage"

"The value of myomectomy for subserosal fibroid is a particularly controversial issue. Our series included 10 cases whose outcome appeared encouraging (conception rate, 80%). However, its effect upon the rate of pregnancy loss requires a much larger observational or randomized control study."

"In our study the reproductive outcomes before and after myomectomy were compared and the subjects did not undergo myomectomy as part of a prospective randomized controlled trial. So far, no such trial has examined reproductive outcome following myomectomy. Until a multicentre study has been carried out, the only available, retrospective, data suggest that myomectomy may improve reproductive outcome."


As a patient I have been told, though I have been unable to find research that backs up these assertions, that:

* c-section will be required post myomectomy

* doctor would be unwilling to work with me as a fertility patient unless I have a myomectomy

My bad bleeding

Starting approximately two weeks ago I started feeling wired like I had too much drip coffee, and kind of anxious feeling as well. I don't drink caffeine regularly and rarely have coffee at all so this was weird. I also didn't have a lot of stress at work or at home so it was even weirder. Then last week I started having insomnia, I was getting up in the middle of the night for hours an ultimately only having 5-6 hours of sleep. It kept getting worse and that anxious feeling kept building. I also had a loss of appetite. It was like something was seriously off in my system.

Then I started feeling vague pregnancy symptoms last week as well, like a vague recap of my first week pregnant including some itchiness, breast fullness, light nausea and my thyroid felt funny again as well. I had two faint positive pregnancy tests on Friday and Saturday but they didn't get darker. On top of everything I was experiencing I felt utterly confused. On Monday I had a beta HCG draw and it was 13, down from 46 a month ago (or perhaps I had a chemical pregnancy?) The nurse called and said that it was probably residual beta from my miscarriage in July.

I continue to feel awful and anxious and tired and then Monday night my period arrives, the second one since my miscarriage. It is very red and very viscous, there is no slimy mucus to it, and not really clotting either. It just is very runny bright red blood. I easily bled 2 cups worth at least, it is hard to estimate since I would have gushes when I went to the toilet. I had a headache, my body felt full of cold water, my thyroid felt strained. I also had odd cramping. I stayed home from work yesterday and took ibuprofen and vitamin C which did seem to help control it somewhat. I also went for an acupuncture treatment and that helped with some of the symptoms, I didn't feel so watery inside any longer. I woke up this morning and had hardly bled at all overnight, practically just spotting. I feel dry and clotting in my abdomen.

I called my RE this morning because I want to get to the bottom of this. It isn't just my fibroid, it isn't just the miscarriage and I'm not taking meds or herbs so something is just out of whack with me.

Since someone posted about von Willebrand's Disease (VWD) in the past year I've thought that I had a predisposition towards it. I brought up my long periods and nosebleed problems as a child, plus my anemia but no doctor has responded to the symptoms (tell me the patient doesn't need to suggest the disorder and I won't believe you). My father is very prone to bruising and I am a bit as well. We'll see. I did see this page on the All About Bleeding/VWD site that talks about how some hormones can influence bleeding problems. As I recover hormonally still it is very possible and also women in my family have noted thyroid problems post pregnancy. I did ask for a check of my thyroid hormones weeks ago as well as on Monday but they didn't write the script for that. I'm going to ask the doctor about getting it checked.

http://www.allaboutbleeding.com/vwd_and_you/view.asp?id=4634

Oh, and you know how I love my links, I found this one that I thought was a good reference about NSAIDs and menstrual bleeding:

Nonsteroidal anti-inflammatory drugs for heavy menstrual bleeding (Cochrane Review)
Lethaby A, Augood C, Duckitt K
http://www.update-software.com/abstracts/AB000400.htm

My Ghost Pregnancy

I had a massage appointment yesterday, the first one with this practitioner since my loss in July, though I did have a massage after my m/c just at a spa with a couple friends. I highly recommend getting a massage after you have a miscarriage especially one with some abdominal work, you will probably cry during it but you are crying anyway so why not let it out while you reconnect and take back your body. It really helped to get rid of the pain in my abdomen.

After my appointment my practitioner asked me about my massage. I talked to her about it in great detail, from the physical pain, to the emotional anguish, the heightened physical sensations I experienced and the continued sorrow. I cried and used up quite a few of her tissues. I told her about how most people want miscarriage to be as long as the word is -- over in an instant. But miscarriage as we all have seen is a process and even after your body heals there is a lot of emotional trauma of the experience that needs to be worked through.

I told her about my ghost pregnancy now, the one that has me comparing calendar dates and events to where I would be in my pregnancy, should I have stayed pregnant. I told her how hard it was as I approached the dates around the end of my first trimester, and as August closed and I should have been shopping for maternity clothes.

I also confided that I can stand the thought of seeing my pregnant SIL who is due a week later than I was in February. And how every pregnant belly jumps out at me. Or how I can't really look at babies anymore because it hurts.

I talked about things that people had said or done for me that were helpful, more than half of them were things that women said to me here on the Internet. We talked about how miscarriage is combination of life and demise, birth and death take on new meaning in this process.

She thanked me for sharing with her, and admitted that she had never really known what happened in a miscarriage or that it could take so long. She also asked if there was anything she could do, or that I could do to make sure others in my life knew how I continued to feel. I'm not sure though writing a letter comes to mind. I also feel, though perhaps it isn't fair or nice, that I should share this experience in such a way to make it a tear-jerker, like in the movies where they make you cry. Then I would know that I had gotten through to them and made them hurt too.

Last night I had a dream, I've been having such vivid dreams this whole summer. In this dream I was in a clinic and I was losing a second pregnancy. In the next bed over was a woman who was losing a baby in her second trimester and there was blood everywhere. I remember wrapping my arms around her and crying into her hair and she wailed on my shoulder and I told her how sorry I was. It isn't the kind of dream one can forget about easily. I know that it was triggered in part from talking about my miscarriage in such detail, but it shows me how changed I am in that I had no horror at the blood, only sorrow.

Miscarriage Factoid

I had a miscarriage in July, actually it was more like an abortion since my body didn't miscarry on its own. Having seen the dark side I would like to share some information with you that you probably don't know.

Miscarriages are not like in the movies, over in one scene. They take time, they are painful, and recovery takes weeks if not months. Also, miscarriages are really awful and anguishing. I used to think when I heard about someone's miscarriage "oh that's so sad". To go through one is a 4-dimensional experience of hell and enlightenment. It's more than sad. To the pregnant mother her baby, this idea of baby or embryo or fetus, it died. It doesn't matter that something was wrong with the pregnancy, we have really strong instincts to take care of our young and being pregnant is no different. Even if you couldn't see the baby it was still there and it died along with the idea of being a mother, your new family and all the planning and changes that one would have to make in preparing for the baby's arrival.

If you hear about someone having a miscarriage you need to reach out to that person and at least say you are sorry for their loss, no different than if you heard that someone's parent died. Don't start trying to think of things beyond that such as "it was for the best", "it wasn' t your time" or "it's God's will" -- you don't know and those things aren't helpful. Things you can do are send flowers or drop them off yourself, send cards or letters of condolence. Don't expect the greiving mother to take phone calls, it is really hard to talk on the phone I've found when you can't stop sobbing.

Also, the pregnancy might have ended but that pregnancy has marked time for the mother and father. The due date is supposed to be a difficult time, any other events one had imagined from clothing or furniture shopping to holidays are reminders of the non-pregnant state, that baby that isn't coming. Keep your love and support coming if you can, it is greatly appreciated.

I'll do a separate posting about what to do if you are having a miscarriage or are helping someone through the actual physical process.

Between a fibroid and a hard place

I've been on this long journey over the past 2 1/2 years. I went from not being ready to get pregnant, panicked about the thought of it, to where I am today which is still recovering emotionally from the loss of my first pregnancy.

Along the way it hasn't been easy, I found out I have a large tumor in my uterus which is called a fibroid. It is benign but they don't really go away on their own. It may be compromising my fertility but the only treatment offered to me was to have major abdominal surgery to have it out which could cause pelvic adhesions which could really compromise my fertility. I'm damned if I do and I'm damned if I don't (I'm beginning to notice that theme in my life...hmmmm...)

My fibroid and I are having our second anniversary this week since we first met. Maybe I'll bake a cake. I have not named my fibroid though I know women who have. And I only have the one, I'm monogamous when it comes to uterine fibroids.

At any rate I've done a lot of research into male and female fertility, hormones, supplements, diet, lifestyle, and a ton about fibroids and other gynecological conditions and I'd like to share with you what I have learned. I do think there is more than one way to skin this cat and I hope you find my research worthwhile.

(This was my very first post here.)

Other Causes of Pelvic Pain Besides Fibroid Degeneration

A common complain of women with fibroids is abdominal Pain. This pelvic pain can come from from fibroid degeneration, when the fibroid outgrows its blood supply and dies, but that's fairly rare and there are other possible causes of pelvic pain including (an incomplete list):

Appendicitis

Constipation

Adenomyosis -- endometrial tissue grows into the wall of the uterus and can form pockets that bleed each month

Endometriosis -- endometrial tissue grows on other pelvic structures outside of the interior of the uterus and swell and bleed with the hormones produced as a part of your menstrual cycle

Ovarian Cysts -- mature follicle that does not rupture and can grow pretty large, if they rupture they can be quite painful. Some cysts are normal and most of the time they are just reabsorbed. There are other forms of cyst which require medical intervention such as dermoid cysts, endometrioma, and sometimes chocolate cysts.

Ovulation -- mittelshmerz is pain that is felt around ovulation, perhaps from the release of the egg or perhaps from irritation from fluid released from the follicle

Pelvic Inflammatory Disease -- bacterial vaginosis, gonorrhea, and chlamidia can all cause infections in the pelvic cavity

Pelvic Adhesions from prior abdominal surgery or infection -- a d&c or IUD can sometime result in an infection as well

Fibroid Pressing on blood vessels or other abdominal structure

Cystitis -- bladder infection

Kidney infection

There is also a diagnosis in traditional chinese medicine/acupuncture called blood stagnation which can cause pelvic pain and is generally associated with gynecological conditions such as fibroids. Liver stagnation is usually part of the diagnosis as well, the liver being the major detox organ in the body and one that is also associated with emotion and grief in chinese medicine. I've found acupuncture to be helpful in managing my pelvic pain, as well as breathing exercises that promote movement in the abdomen. Here's a link about blood stagnation that you might find useful.

All About Blood Stagnation
http://www.acupuncture.com/Herbology/bloodstag.htm

If your doctor checks you out and you are still having problems then
you might consider the blood stagnation possibility.

I finally got my period, the first one since my miscarriage in July, this past Saturday (Yeah! Time for a party!). My beta was still up last Friday, I hope to have another draw today to see if it has gone down more.

In the meantime I've noticed that my fibroid has gotten dramatically smaller over the past couple weeks (even more cause for celebration!) I've got a call into the doc to see if I can get another u/s to check on it as I'm starting up on my chinese herbs again and I want to know what we're working with. We'll start trying on the baby-making in October to give some time to treat my fibroid with herbs and acupuncture.

Now if this extra fat around my middle would just go away then I would be back to normal....

It's raining, it's pouring...

After I found out about my fibroid I cried a lot. I cried for 3 days when they told me about my fibroid. I was so upset that my eyelid twitched for 3 months after that! After every doctor's appointment I had I was an emotional wreck afterwards.

A mean RE at the local university fertility clinic told us on a Friday that we needed IVF with ICSI and that we woudn't be able to conceive on our own. The next day we had to go to a wedding and someone from asked me discreetly about my fibroid (we lied and said that was what the Dr's appt was for, we didn't want any one to really know about our fertility problems) and I lost it and had to leave the wedding before the toasts. My partner couldn't get out of there as quickly for social reason so I just sat in the car and cried for 20 minutes by myself on a side street.

I had another time last spring, right after my HSG when I found out my uterus was wrapped around my fibroid and my doctor told me I should probably have the fibroid out. I went to dance class a couple days later -- surely dancing would help me feel like my body was mine again. But there was a guest instructor and when she wanted me to correct my pelvis alignment and I left the class sobbing.

Over Christmas my OB that I had made 2 months beforehand come up so I decided to get another opinion. Aside from crying the entire time in her office when I left I started sobbing in the parking garage and had to wait a long while until I was settled enough to drive.

Another time, at the beginning of the year, after yet another Dr appointment I had to leave dance class again and just cried in the hall while I waited for my partner to finish. It was all so stressful, I was unclear as to what to do, and it seemed like we would never have children without some major medical interventions.

Nutrition and medicine

"The doctors of the future will give no medicine, but will interest his patient in the care of the human frame, in diet and in the cause and prevention of disease."

--Thomas Edison


In case you didn't know, most medical schools do not offer adequate training in nutrition to medical students -- even today. Ever notice that most doctors won't even ask you if you are getting enough rest or drinking enough water? We could be living on potato chips for all they know.

Naturopathic medicine in contrast focuses on the body's ability to heal itself and nutrition is a key part of this -- hence why some of us have had some improvement of health while under the care of naturopaths. In the ideal world of the future all doctors will look at us holistically and help identify imbalances before they become issues. I'm not saying naturopathy is better than allopathic (western) medicine, but I am saying that you will feel a bit better cared for since they try to get to the bottom of the causes of what ails you -- including psychological, spiritual, emotional, causes, etc. I got my anemia finally in check after other doctors telling me that it was normal for some people -- and I'm feeling much better now.

Since we know that western doctors aren't getting this training it is important that we seek out information about the role of nutrution in our health issues on our own. Doctors might even agree with you when you ask if you should be taking B-12 for instance, it just might not be something they offer you on their own.

Here are a couple links to learn more:

Nutrition Education in U.S. Medical Schools (1985)
Commission on Life Sciences (CLS)

Naturopathic Medicine - Philosophy

Oh, and if you are interested in controlling bad cramping pain then you might consider some of the suggestion for controlling prostaglandin production on these pages:

What causes Menstrual Cramps and Pain (Western and Oriental Medical
Perspective)

25 Ways To Handle PMS

Beta Numbers

Here are the blood test results after my retained POC was diagnosed in mid-August.

543 on 8/12

259 on 8/17

145 on 8/23

78 on 9/1

46 on 9/10

Beta HCG - What it is

Beta HCG is the pregnancy hormone. The fertilized egg and embryo produce it and it cause the corpus luteum to sustain and continue producing progesterone to support the pregnancy. It come from the embryo, not the ovary, uterus or fibroids. I don't know if it contributes to fibroid growth directly, but the progesterone/estrogen produced in pregnancy sure do.

BASELINE ULTRASOUND

A baseline ultrasound just helped to provide a comparison measurement before and after treatment. My RE wanted to see how it was doing since it had been almost a year since the previous scan. Without it I would have no way of knowing if it was larger or smaller than it had been so how would I be able to just if the treatment was really working.

I arranged for a second ultrasound to see if there was any change
from the acupuncture and chinese herbs, but note that I waited 4 months with continuous treatment -- change if any would come slowly
my acupuncturist assured me. I mentioned that I was pregnant for this second ultrasound so it is possible that there was additional
shrinkage but the pregnancy hormones didn't provide a clean comparison.

Your doctor may do yearly ultrasounds to monitor your fibroid, you
may want to go more frequently if you feel a lot of changes, every 6
months perhaps. If you are wanting to try to evaluate the affects of
a particular treatment a baseline comparison before and after will
help you to see the affects.

Fibroid Growth in Pregnancy - SIZE CHANGE

Considering that my fibroid only grew in the 18 months prior to treatment and then shrank back 2 cm I think that is a pretty big change. I knew that when I got pregnant I might experience growth (though I hoped I was the rare girl for which it would shrink) but it was important to me to try to shrink it beforehand.

It did grow, and quite a bit but what can one do. We were ecstatic
that we got pregnant and were taking it all in stride, unfortunately
no embryo developed so I had to have a d&c to terminate since my body was happy cooking along. It also shrank back some right away, I'm hoping we can shrink it some more.

My fibroid I could feel prior to my getting pg and it was 6x7cm. It
grew a lot, at its peak measurement it was up to 9x11x11cm. A couple
weeks ago it was dropped to 8x9cm. When my bladder is full it is
really bad, when I'm lying down you can see it bulging out and it is
more uncomfortable than prior to my pg. Some pairs of pants I have
are also uncomfortable now because they put too much pressure on my
lower abdomen (I know you are probably clucking your tongues at me
telling me not to wear them then).

So, I know I have beta still in my system so it probably isn't
shrinking as much as it might eventually. If you have fibroids and
know by measurement or physical sensation (pelvic pressure, etc.),
how long did it take for them to shrink down for you?

I could live with the pressure prior to my pg but now I feel the
pressure so much that I keep thinking I might want to have it out.
Still, I will first try to shrink it back with acupuncture and herbs
which worked before.

So, can anyone share with me how long until their fibroids shrank
post pregnancy?

Frankincense and Fibroids?

I found this page while surfing that mentions some additional herbal treatments, what got me curious was that this one mentioned frankincense which is one of the ingredients in the chinese herbs my acupuncturist had me taking in the spring -- when my fibroid shrank.

http://www.nspforum.com/faq/bbs.cgi?read=938

I started acupuncture treatment in January and had an ultrasound a couple weeks later to help provide a baseline measurement. My fibroid at the beginning of February was 6x6.5x9cm which was larger, mostly longer than the 5.9x6cm in September 2002 when it was discovered, or 6x7cm in March 2003. I started on herbs in March and took them for about 6-7 weeks only, all the while going for weekly hour-long acupuncture treatments. I stopped taking the herbs because I had an issue with bad bleeding during my period which freaked me out, these are strong herbs and not to be used during pregnancy or during menses. My acupuncturist said the herbs are intended to "break the blood". I scheduled a follow-up ultrasound for the beginning of June and as it would happen I had a positive pregnancy test that same morning. My fibroid was back to 6x7 though the ultrasound was not taken on cycle day 3 since my period never arrived. I'm amazed that there was that much of a change.

Here are the ingredients in my supplement, TumoSolv which is formulated by LongLife (http://drhuang.biz/LongLifeMaster.asp):

Bureed tuber, Zedoary, Fritillary tuber, Prunella, Sargassum, Frankincense, Myrrh, Angelica

I don't know if they sell to the public but I would advise anyone interested in trying it to seek treatment though a licensed practitioner of Oriental Medicine and Acupuncture.

My fibroid is still enlarged from my pregnancy, my body is still producing beta HCG though it is slowly dropping. I'm back in weekly acupuncture treatment and soon I'll start using the herbs once again.

I just thought I would share since I did try very hard to be controlled in my evaluation of my fibroid size before and after treatment and I did have positive results. I hope that this gives you hope and inspiration as well.

In His Grace

Ecstasy.
In His grace.
Something important in store for me.
My closest hour.

The watch wheels spin slowly
the sky turns electric blue, or turquoise
a color really that no words can hold.

The pineapple and the family tree
take sudden shape
from here springs all life.

In the rays of sun, from my front porch
I could touch the stars.
It is completely silent and
the world around me has turned
vivid warm shades.
I catch my breath and pull closer,
the heat penetrates me.
I need to be in the light;
indoors I feel a chill across my skin,
it creeps and is unfriendly.
I go into the light.

I decide that Joan of Arc
had a miscarriage and that was why
they killed her.
And Morrissey, he doesn't actually like
gladiolas
he just tells people that so when
they come at him with flowers
it just reminds him of the fact
that they don't know him at all.
How clever he is.

I tried laying in the bed, on the cloth sheets
settling down, taking a rest
surely I had something to do with it.
I turn, I bend, I contort.
There is no relief.
Please let it stop.

I drink red wine and eat chocolate;
chocolate might be able to keep the pain at bay.
I make tea, hot passionflower tea,
so named in memory of Jesus's crown of thorns.
The tea is soothing some and the pain calms for
a couple of hours.

The doctor said take ibuprofen
was he kidding me?
It is like my uterus is trying to rub itself clean.
Pain radiates from below my ribcage
half way down my thighs.
That is more than half my body mass I think.
More wine, I need more wine
and heat, but I'm not allowed to bathe.
A hot water bottle, a red rubber vessel,
becomes my most prized possesion
filled to the top with hot water.

I breathe deeply,
isn't that what women do?
But breathing is for putting out babies
and there is no baby here
just a cruel test drive
a fire drill
an exception.

Except that God wants me close
closer than ever before; he needs me
to be strong, so strong
I'm not strong enough.
But his rays wrap around me
the growing light and love
I'm not alone, why I'm not sure
and no, it wasn't so clear right then
but I'm sure of it now.

God's children die for our sins
and mine, yes mine too
but not any more than anyone else's
and my baby didn't even come
it wasn't time yet, not our time.
Will it be soon?

So Many Days

I am a waterfall, the weight which pulls down constantly;
a fork, its tines twisted and useless;
a witch wanting to take babies from their mothers
because everyone should know how empty I feel.
I am like Scotland, rubbed raw of her Caledonian forests;
a bird frantically wanting to make nests;
an old teacup with a rotten egg.

I want to be hope on the horizon of a distant ship;
a comfort to those at my breast;
all daisies and dragonflies.
I wait, I count days, so many days

Grieving Loss

I think the hardest part about early loss, especially for us first time mothers, is that we are just starting to get used to the idea of being pregnant and beginning our plans for the next year and then suddenly you aren't expecting anymore. One book I have talks about how it is helpful to recognize that you and your husband are grieving different things -- you each had your own hopes and dreams about your baby. Over the past week my partner and I have had some ups and downs, sometimes he's the only one I can talk to about it and other times I hate how he acts about our loss. Try to use your extended network for support and not just your husband, it can help a little in my experience. But do let yourself grieve.

A new article/research that looks into the role of progesterone and
estrogen as influencers of fibroid growth.

Sex steroidal regulation of uterine leiomyoma growth and apoptosis

[The abstract is available to anyone, the full text requires a
subscription or you can pay for 24 hour access.]


UPDATE ON ME
My beta dropped this week from last week from 543 to 289 (thurs to
tues) which is a good sign and the doctor says we can just wait and
do another blood draw on Monday (the other alternatives were a repeat d&c or methotraxate - yuck!).

The rest of my bloodwork came back normal, which is good since I've
been bleeding/spotting for a month.

My basel temperature also dropped for the first time since the
miscarriage (where it dropped just one day) and is the lowest it has
been since I got pregnant. Keep your fingers crossed that all goes
well and that I get my period in the next week.

I got measurement info about my fibroid, here's for the last 4
ultrasounds (approximately) -- in September 2002 it was 6x6 cm:

Feb 2004 - 6 x 6.5 x 9 cm

June 9 2004 -- 6 x 7 cm (day I found out I was 2.5 weeks pregnant,
with weekly acupuncture treatments and chinese herbs starting in
January)

July 8 2004 -- 9 x 9 x 11 cm (after 3 weeks on 100mg supplemental
progesterone and one week prior off to the ultrasound - 6.5 weeks
pregnant)

August 17 -- 9 x 7 cm (with beta still elevated post miscarriage)

Interesting Facts

Male DNA doesn’t kick in until day 3 of cell division…

“Surprising to many, the male genome (sperm DNA) is silent in the first 3 days of embryo development. The oocyte drives the development and cleavage of the early embryo. On Day 4, a critical switch occurs, and the male genome is turned on. At this time, the maternal and paternal genomes begin to work in concert to orchestrate the activities of the newly developing embryo.

It is at this time - Day 4 - when abnormalities in the paternal genome may begin to have what can be profoundly devastating effects on embryo development. Therefore, using sperm with abnormal DNA for ICSI may lead to normal fertilization and early embryo development yet be followed by embryo death expressed as a failure to implant (no chemical pregnancy) or early pregnancy loss (prior to an ultrasound-confirmed heartbeat.)“

from: ICSI and SCSA Sperm Diagnostics

http://www.inciid.org/newsletter/feb/scsa.html





Maternal RNA helps fertilized egg read DNA instructions

“From the moment of fertilisation, the embryo grows as the cells of the fertilised egg multiply. However, there is a problem. How can the DNA be read if the materials needed to read it have not yet been produced? The answer is that they are provided by the mother in the form of mRNA and proteins. The early stages of development are controlled directly by the mother's genotype for about the first three weeks, in humans, after which the embryo's DNA takes over.”

from: Conception and Development

http://www.gender.org.uk/about/04embryo/44_cncp.htm





Paternal DNA grows placenta and gestational sac, maternal DNA grows healthy embryo

“...These observations suggest that genes expressed by the paternal genome are directed towards the development of extraembryonic tissues essential to support the growth of the embryo, while the maternal genome appears to be geared towards expressing genes that contribute to proper embryo development. The opposing tendencies of the male and female genomes as well as the elucidation from mouse studies that Igf2 and Igf2r are imprinted genes with conflicting functions led to the development of the most widely recognized theory of imprinting, the ‘parental conflict’ hypothesis (Haig and Graham, 1991; Moore and Haig, 1991). This theory proposes that the paternal genome has evolved to express genes that favour the extensive use of maternal resources and lead to optimal fetal development and growth, thus ensuring transmission of the father’s genes to the next generation. On the other hand, genes expressed by the maternal genome serve to counteract the effort made by paternally expressed genes, and limit investments in embryo development and growth in favour of salvaging resources for future pregnancies.”

from: Potential significance of genomic imprinting defects for reproduction and assisted reproductive technology

http://www.humupd.oupjournals.org/cgi/content/full/10/1/3

Too much progesterone -- looks like fibroid grew

I'm still recovering from my miscarriage post d&c and I'm thinking that my uterus is mostly back down to its smallest size, wrapped around my fibroid. I had a feeling that my fibroid grew during the early weeks of pregnancy but since the uterus was enlarged it was hard to be sure. Now though, when I lay on my stomach (doing some exercises on the floor last night) I can feel my uterus/fibroid as I lay there. Big bummer eh? (I had a 6x7cm single intramural fibroid on the right side of my uterus)

My doctor put me on supplemental progesterone since my levels tend to be low, 50 mg of progesterone via vaginal suppositories twice daily. The progesterone actually made me feel like I was on a roller
coaster -- I felt horrible. I only know it was the progesterone since I stopped taking it when we found out our embryo wasn't developing and I felt so much better.

My progesterone level when checked last fall was 9.4 ng/ml, when it
was checked when I got pregnant (about twice the number of days from
ovulation as when I had the previous test) it was 19.8 -- so it had
doubled in twice the amount of time. Studies have shown lower
progesterone levels have been linked to higher miscarriage rates
(http://www.inciid.org/fertinews/progthresh.html), although there is
some disagreement in the medical community as to whether or not
supplementing progesterone will help keep women from miscarrying.

So, I'm not sure if I just have lower progesterone and that's normal for me and it will be fine, or if it might have contributed to our loss (one can only speculate at this time). I imagine that it is possible that my progesterone was low and I needed supplemental but maybe not as much as I was given, or that maybe just the fact that my fibroid is present means that the extra progesterone is going to cause growth regardless and unless it is removed it will always cause the same problem. Hormone levels in early pregnancy aren't that high, so it is possible that this was more progesterone than I could handle and that it wasn't balanced out with the estrogen.

I'll let you know if I learn any more, if my fibroid shrinks any or
if there are new numbers from the ultrasounds I had in the past month about the size change from early June.

A message to another woman going through a miscarriage:

I found out on July 1 that we had a blighted ovum, so there wasn't a baby but just a gestational sac. I was deeply sad the first few days about not getting to be a mother. My doctor had us do a follow up u/s the next week which confirmed that no baby was present.

I was offered d&c or to miscarry naturally, I also looked into mifepristone (RU-486) but my doctor said since I have a large fibroid that he didn't think it was a good idea. My doctor was out of town the following week and I opted to have the d&c on July 19th. I figured I was giving my body a good chance to figure it out on its own by waiting.

Well, nothing changed while I waited and it just got kind of frustrating in a way that my body was spending so much energy on a pregnancy that wasn't going anywhere. I would see pg women on the bus or walking downtown and think "I'm pregnant too, but with nothing" and I hated having that in common with them. I also found that I couldn't talk to most people about what had happened, since it wasn't over yet. People heard about our failed pregnancy but didn't quite understand that I was still pregnant.

I had the d&c a week ago on Monday and it wasn't that bad. My doctor is an RE and did an u/s guided procedure to just remove the products of conception and not disturb the endometrium. The full on scrape out type of d&c can lead to scarring. [link=http://worthwhile.blogspot.com/2004/07/im-back-and-i-survived.html]You can read about my d&c here[/link].

The d&c is just helping move along the process of ending the pregnancy. The body has one way to recover from pregnancy and it uses it for miscarriage as well as normal delivery. I'm sure the resulting symptoms are stronger the longer one has been pregnant since the hormone levels only get higher.

[b]I'm someone who likes to know the details about what is going on so I'm sharing my experience with early pregnancy loss with you but skip if you don't want to know[/b]

There isn't a lot of information about what happens post d&c and I don't want to freak you out but in order to prepare you (and others) I will describe what I experienced (and other may have different experiences):

Day 1: (day of procedure) Feeling a little out of it and tired the rest of the day.

Day 2: I went back to work but couldn't really do anything. I felt kind of numb about the experience. Some cramps and very light spotting. A hot water bottle helped.

Day 3: Felt very tired in the afternoon. Still light spotting and occasional cramping. Fairly productive at work. In the afternoon I started feeling really sleepy. I felt sick in the evening which I think was a combination of a 24-hour virus coupled with a big hormonal shift. I got bloated and had a fever overnight (probably unique to my experience).

Day 4: Headache, neck and backache. Stayed home. Still had a fever for part of the day. Slept in the afternoon.

Day 5: Still felt a headache, stayed at home. Cramps all day long. Around 4pm they started getting worse. I tried laying down but they were overwhelming. I had really intense cramping which hurt from just below my ribcage to halfway down my thighs. I took ibuprofen but it didn't really help. Red wine and a hot water bottle offered the best relief. I started bleeding finally around 10pm. The labor like cramps went on until 2:30am at which time I guess they subsided or something because I fell into a deep sleep.

Day 6&7: More cramping, headache, backache and now sadness. Sadness and anger at having to go through this experience.

Day 8: Back to work. Very weepy. Still uncomfortable with cramping.

Day 9: Stayed at home. Saw my chiropractor for a regular appointment (treatment for a back injury) and asked him to do what he could to make sure nothing was contributing to the cramping pain. In the afternoon I had a massage and the massage therapist gave me an abdominal massage, not deep tissue or anything just helping go over the middle. I cried during that part. I ran a little way with my dog in the park and my breasts were killing. I realized when I got home that lactation had kicked in.

Day 10 (today): Stayed at home again. I was feeling very exhausted today. I had an acupuncture appointment this morning to help balance me out. He told me that my liver was out of balance and that it was throwing off my kidney and spleen as well. He said that the bleeding aggravated my anemia and that there was some blood stagnation. He helped get rid of a lot of the pain in my abdomen. I asked him what I could do for my liver since it seems to be the most out of whack and he suggested a small amount of red wine -- which I had already been taking each day and really did seem to be the only thing that helped.

I looked up in my medical endocrinological text today about the lactation thing. Evidently 3-4 days post delivery the levels of progesterone and estrogen drop and prolactin has the stage to itself, those other hormones no longer suppressing its action on the mammary glands. It is supposed to go away on its own, provided you don't add any stimulation, in about a week or so.

The only thing that I would do differently if I could turn back time would be to know about this process ahead of time so I would be more prepared than the fact sheet they gave me that said "you may experience some cramping and bleeding" and I do wish the doctor had given me a prescription for a strong pain killer ahead of time.

The other thing I think we should accept is that society doesn't expect women who have gone through labor to deliver babies to go back to work right away. I think we need to remember that if we who have miscarriages experience labor, that we give ourselves the same TLC that we would want as a new mother.

I'm really sorry for your loss but hopefully knowing more about the physical process will help you through it. It is an emotionally and physically draining experience but allow yourself time to grieve and recover. I think I'm going to wait a fully cycle to try again, but maybe not.