they're back.....

i've known for a couple of weeks but too depressed about it to write. had my 18 month post-op ultrasound a month ago & then saw my surgeon the following week. i have a lot of small fibroids. they're very small - the biggest is an inch across. i shouldn't be surprised at this news, but i'm disappointed. all i can think of is going through everything all over again. i feel like i'm starting over again. my surgeon isn't too concerned. she says she's not going to even give me another ultrasound for another year. i know that i need to once again, take matters into my own hands and do what i need to do to stop them from getting bigger if i can. trying to stop eating meat. i'm not a big meat eater, but this is really hard! i've cut out red meat, and really limited chicken. this is all too upsetting.....

7 months post op - i'm angry!

I'm finally out of the woods - I think I'm gonna be alright. It's been over 7 months and I'm feeling great. I had a couple of minor setbacks along the way - threw out my back a couple of months ago, but overall I'm well. My periods are probably what a normal woman's should be. No more wearing 2 tampons + a maxi pad or bleeding all over my bed and workclothes and chair. Hallelujah!

A friend of mine, a journalist, interviewed me last night for a story she's writing on fibroids. I can't stop thinking about it. I'm so angry. Talking to her really riled me up. All I can think about is the 10+ years I suffered before being diagnosed with fibroids, the multiple doctors who told me that I was making a big deal about nothing when I complained about my periods, even when I was going to the Emergency Dep't. because of the severe pain. I'm furious! I've added a new link to this blog: an article from Newsweek called "Menstrual Mysteries." This article was referred to a while ago in the Uterine Fibroids message board. It gives a rating scale for women to determine how heavy they are bleeding. The article asserts that many women who've gotten hysterectomies due to heavy menstrual bleeding may have gotten them unecessarily because they and their doctors were probably not communicating well - women often have problems describing their flow. When researchers gave women this rating scale and actually measured women's bleeding, they found that women's estimates were very close to the actual flow.

When this article came out, a number of us discussed this on the fibroid message board. Most of us had periods that were off the charts. The highest category of bleeding for this survey was needing to change the highest absorbency maxi pad or tampon every hour or two. As I said above, I was wearing 2 Ultra Plus ob's at the same time with a maxi pad and changing every hour - for 10 years! Many of us on the message board also talked about wearing 2 tampons together. In my experience, doctors didn't ask me exactly how much I was bleeding. They were content to write me prescriptions for pain and tell me that my bleeding was normal. The Newsweek article says that women experiencing heavy bleeding should talk to their doctors about it. I've been talking for years, and it was only through taking my matters into my own hands and beeing a bully that I got to see a gynecologist who diagnosed my fibroids. She was the first person who asked me exactly how much I was bleeding.

This is so wrong. My friend told me that she has interviewed doctors about fibroids and asked them what women could do to communicate with their doctors. They didn't really know what to say. My friend said that women probably know what would help. This is what I told her:
1. research, research, research - get on the internet
2. try a message board to talk to other women - the links to the ones that i'm on are listed here
3. talk to other women as much as you can - fibroids seem to be this hush-hush matter, but once you start talking about yours or your fears, you'd be surprised to see how many women have them and how many have been through surgeries
4. do not take 'no' from your doctor - if you know that your period is abnormal, suspect you have fibroids, are in pain, either stand up to your doctor and make your demands clear or if s/he is dismissing you, don't walk, RUN, to another doctor. keep running until someone takes you seriously and gets you an ultrasound
5. make sure you have a proper ultrasound - one that tells the size and location of your fibroids. my first ultrasound was done by a terrible lab who gave very little details. internal ultrasounds are not fun, so try to go to a good lab so you only have to have it done once!
6. if you are diagnosed with fibroids, again - research! find out about the treatments out there. there are a few options - medical and non-medical. if you want to try holistic treatments, the 'healing from fibroids naturally' message board on yahoo is great. ask yourself some questions - are the fibroids interfering with my life? am i in pain? do i want to have children? am i willing to wait until menopause and hope that they shrink? am i willing & able to try holistic treatments for a while to see if they work?
i'm saying this because even though surgery really helped me, i am by no means a big surgery advocate. i really see it as a last resort. It's very hard and painful and invasive. the lupron is debilitating. if i didn't have that killer pain that forced me to go to the hospital each month, i may have not gone through with surgery. clearly many women live with fibroids - many women don't even know that they have them until diagnosis. i don't believe that every woman needs to have her fibroids removed.

one thing that i've stopped doing though is knocking women who've had hysterectomies because of fibroids. i've always heard that doctors force women into getting hysterectomies instead of treating fibroids. yes, this happens, but there are also large numbers of women who choose hysterectomy with their eyes wide open and i can totally understand. at least once a month, someone comes on the message board who says that she's had a hysterectomy and she's tired of criticisms for her choice. her fibroid pain &/or bleeding was intolerable and after much research/questions/prayer, she has made this choice. i have to say that if i already had children, i may have gotten one too. the pain that i had was so intense and sharp and excruciating that if i already had children, i'd absolutely consider hysterectomy. it's drastic, but the only way to guarantee not getting new fibroids.

so, i'm really not advocating any treatment method, but i advocate that we women need to take our healthcare into our own hands. we need to start talking about fibroids in our community. we need to stop thinking that our pain is a private affair and nobody needs to know about it because our words and expriences can help another sister on her path to wellness. as i told my friend last night, after my surgery, i went to my mom's church and one by one, these older west indian church sisters held me and whispered in my ear, "you know, i did it too". thank you for letting me know that i'm not alone, but i'd really like you to stop whispering and start speaking out - speak out to your doctors, speak out to your family, speak out to your church, keep speaking........

good luck women

almost 3 weeks post op

i'm tired of being sick now. the recovery has been pretty good, but not as quickly as i'd like. the constipation continues to be the hardest part of recovering. if i could get that under control, then i'd feel pretty good. i've got this pinched nerve now. i've had it for about a week now. my theory is that it came from sitting in bed in the same position for too long. the pinched nerve is in my upper back, my right shoulder really. it hurts just when i move in certain positions - like putting the car into park, or when playing the piano and hitting certain keys, or today while tweezing my eyebrows.

anyways, back to the recovery - i'm driving a little. i've spent the last week with my parents and my mom doesn't like to drive at all anymore so i ended up driving her everywhere. my father likes to drive, but he's so busy and active, and therefore gets very tired. we went to the casino across the border a couple nights ago and i ended up driving because i didn't want him on the road tired. driving, or even being driven, is very hard on my body. every speed bump and pot-hole is like being punched in the stomach right on the incision. today i was driven from hamilton to toronto (about 40 miles/60 km) and i wanted to throw up during the whole trip. i had a hard time.

the scar looks really good. the surgeon did a great job at making a clean cut. it's very straight and so far i don't have any keloids. my mom (as well as a lot of Black folk) gets keloids so she was very nervous about my scar. so far, so good. i've never had a big problem with scarring, pierced ears or other skin problems like my mom though.

i'm itching to start working out. i know that i should take it easy, but it's difficult to not be active even a little. i'm going to ask my fibroid message board gals when they started.

overall, i'm on the mend, but i have to really pace myself. when i push myself and do too much (like boxing day shopping), i really pay for it the next day. the next day i get really tired and the incision is very sore. i need to relax and take it easy. i've got 3 more weeks off of work and i'm going to enjoy every single day.

Lettie's experience - shrinking her fibroid naturally

i was reading one of my Yahoo message boards "healing fibroids naturally", and came upon this post by a woman, Lettie. Lettie posts quite often. she has had great success shrinking her fibroid to a very small size. this is what she did. of course, this should absolutely not be construed as medical advice or any kind of advice from me, but only the experience of one woman, Lettie, whom this has worked for:

"For me, the most important dietary change I made was to avoid dairy,especially cheeses. I have not eaten meat since the 70's but I would avoid all red meat. I do crave fish and began eating it again, a few years ago. I still had a little organic skim milk here and there. I was heavily into cheese prior to fibroid diagnose. I also try to buy organic to avoid pesticides, etc. as these are xeno-estrogens and the body reacts to them as it would estrogen. I would say eating low fat and high fiber is the best. Fiber removes estrogen as it lays in the digestive track. I would stay away from soy and black cohosh...just my opinion as they are estrogenic.I supplemented with Vitex to balance my hormones. It was very helpful to me.I also helped my liver to process estrogen by using milk thistle and dandelion root.Exercise always makes me feel better as it helps all the organs to run more efficiently. If I exercised regularly my symptoms abated, if I stopped I could feel my belly swelling gradually.I also took (not presently but for a very long time) calcium d-glucarate to metabolize estrogen.I also went to drinking natural spring water. The fluoride actually raises estrogen levels.I try to avoid chemicals of any kind and air pollution as much as I can, such as keeping the windows shut and the air circulator off,when driving.I take B-vitamins to help metabolize estrogen.I also take a good magnesium/calcium supplement. It helps me to avoid bloating and other PMS symptoms.Recently I began to take walmart brand of metamucil. Studies have proven that it can lower estrogen levels in women. I feel great taking it. At first my bowel movements were so weird and gross looking and now that's not the case. Apparently that stuff got a lot of gunk out of my system. I would really suggest you try this as I saw marked improvement and wished I had started doing this earlier. I feel now, that part of my problem was that I never had enough fiber in my diet."
-Lettie

check out the message board as there are some great discussions on this board as well as the other one that i'm on "uterine fibroids". i'm a little worried though after reading the natural fibroid board as one woman was on there blasting the drug 'lupron'. she says that she would not let any woman that she cared about take this drug - referred to it as a 'chemical castration.' i'm a little worried about long-term effects. one thing in my favour is that i did not take it for long - only 3 months which is the recommended maximum dose. apparently there are doctors who prescribe it for months on end to shrink fibroids.

9th day post op

the constipation has been eased a little bit (didn't want to just say that i had a bowel movement), but i'm still going to try a laxative to get things moving. can't believe i'm talking about this. i don't quite feel like myself still. still in some pain - my stomach feels very week and the rash from my stomach is moving upwards to my chest. what a mess! i wish i had been more prepared. i think my doctor and the hospital were pretty good with giving me information, but i wish i had known that i could be constipated for 2 weeks or the extent of help that i'll need to function in my home.

speaking of functioning in my home, this is quite difficult. i made a mistake. i told people to come and visit me in the hospital, and they did, but i really should have told people that where i'll need the real help is at home. i wish i had some help here during the day. my friend is here at night, but it's during the day that i need help getting up, cooking meals, having a shower, oiling my hair (black people know what i mean), lifting things. it's nice for people to visit in the hospital, but it's at home where the real work is needed. today, i need water and a laxative. i can't go out to get these myself. everyone said that they'd help me, but i'm here all alone. i know i could call people and ask them to drop everything from their busy lives and bring the things that i need, but i don't want to disturb people. i'm too proud - i know.

tomorrow my dad is coming to get me. can't wait for that spoiling from my mom! can't wait for some jamaican food!

i should stop whining. as i write, my friend has just bounded into my house with a case of water and a laxative. God is good!

8th day post op

the incision still really hurts, but i'm constipated again, so really trying to ease off the painkillers and just take them in the evening so i can get to sleep. i know i'm dehydrated as i'm no drinking nearly enough water. that is my goal today - eat lots of fruits, veggies and drink water. got to get these bowels working again! it's funny - anyone that know me, knows that i never, ever talk about bodily functions. it's so ironic that my day is now centering around passing gas and bowel movements!

i've been reading my fibroid support message boards and i am humbled by the experiences that some women have gone through and are continuing to experience. i feel so lucky that i am in canada and don't have to worry about the cost of seeing doctors and surgery. so many of the american women on the message board are suffering terribly because they can't afford to get treatment. this one woman broke my heart - she's practically bleeding to death every month, has no medical insurance and so far, in her search for a cheap surgery, she's been offered a 'charity' rate of $4000 to do a surgery! another woman writes that her hysterioscopic surgery cost $10,000. that's not even as complex as the surgery that i just had! i wish i had money to send to these women to stop their suffering.

i've added a link to this site for a book, "Healing Fibroids: A Doctor's Guide to a Natural Cure" by Dr. Alan Warshowsky. A few women on the message board swear by this book. it gives some strategies for dealing with pain and bleeding and preventing/reducing fibroids. for example, the doctor recommends the following for heavy bleeding:

"I tell women with heavy bleeding associated with fibroids to take thirty drops each of yarrow and red raspberry tinctures, two to three times a day, for about two weeks prior to the onset ofmenstruation. When their period starts they continue with the herbs.If the bleeding is still excessive, they can add the same amount of shepherd's purse."

7th day post-op

not much to write about today. i'm still in pain from the incision. i'm not taking the painkillers very much because the constipation is terrible. i need to find some kind of compromise or balance between managing both my pain and constipation.

went outside and actually drove today. i hadn't planned on driving, but my mother was so nervous about driving in toronto that i finally took-over and started driving mid-way in our trip. driving was okay. i don't think i'm going to drive too much for another few days as i don't really feel steady behind the wheel. i don't feel like my reactions are quite what they should be. it's also very painful getting in and out of the car, and closing the car door is almost impossible because of the stretching. pot-holes and speed-bumps are extremely painful as well.

my mother thinks that my stomach looks a lot smaller already. i guess that makes sense as i've had 10 fibroids removed. however, i just feel sore and bloated so i don't see it. i've broken out into a rash all over my stomach. i don't think it's related to the surgery in any way. probably just from perfumed lotions. it's funny how much my mother is in my head at all times. when i was packing for the hospital, my mother (who was a nurse) kept telling me to bring nice smelling lotions so i'll smell good in the hospital. so, i bring these highly perfumed things and look at me now? i'm a mess.

my mom has now left me and gone back to her home in hamilton. i miss her so much already. she has almost never left my side since the surgery last week. she's been cooking every meal for me, helping me get in and out of bed, fixing my hair - just spoiling me and doing everything. i feel so lost, but it's time i start being on my own again. it was so tempting to go wth her to hamilton today so this spoiling can continue. a friend is staying with me for the next few days and then i'll go to hamilton for the christmas holidays with my family. i don't think i'm ready to be alone at night as yet. i find the pain is worse at night and after sleeping for 7 or 8 hours without painkillers, i am so stiff and sore in the morning. i really need someone to help me up in the mornings.

anyways, i feel like i'm a little stronger than i was yesterday. hopefully i keep improving. i'd love to be able to work out again in a couple of weeks - at least walk on the treadmill. i don't see me doing any 'core' exercises for a while.

the surgery's over

i can't believe it - all this buildup before the surgery and now it's such a letdown. kind of like building up to a wedding and then the next day coming down - of course that's a ridiculous analogy as there's no great event that i was building up to.

how do i even describe the surgery? it was everything i feared, but i'm so glad that it's over. first of all, the laxative that i took the night before did not work so well. i had a little bit of diarrhea the night before and then, nothing until of course, when i get to the hospital. i didn't want to tell anyone at the hospital what was happening because i was so afraid that they wouldn't go ahead with the surgery.

pre-surgery at the hospital, everyone was so nice. my mom came with me. everywhere we went, different nurses, doctors, anesthetists would introduce themselves to me. finally, it was time to go into the operating room. i wasn't scared until then. the room was full of different medical people milling around, looking at charts, preparing instruments, getting needles ready for me. all of a sudden, i had to pee. i told my nurse that i was very sorry, but i really needed to pee before the surgery. he said that this happens to a lot of people. i came back to the room, took off my clothes and lay on the table with just my gown resting on top of me. i felt like a slab of meat. the head anesthetist had to come in to put in my i.v. as my veins are very small. he stabbed me so many times that he had to freeze the tops of both of my hands and wrists so he could stab me even more. they put a mask over my mouth and nose and told me to breathe deeply.....

next thing i knew i was in recovery - absolutely horrible! i woke up in excrutiating pain! the incision was hurting so badly and i couldn't move because even the tiniest movements sent a searing pain through my belly. i couldn't stop moaning loudly. there were at least a dozen other people in recovery as well. it was terrible. i was hooked up to a bunch of machines, wires everywhere. one machine just took my blood pressure automatically every few minutes. people would come by and give me needles. someone hooked me up to a morphine pump. i had read all about the morphine pump at my pre-surgical appointment, but nothing prepared me for this - the pump didn't seem to work! every time i pumped, the pain seemed exactly the same. nurses would come by and say "the pain's much better now, isn't it?" i'd consistently say 'no', but they'd move on anyways. they kept asking me on a scale of 1 to 10 what the pain was and i'd keep saying '10', but they still moved on. after about an hour with the morphine, they asked me what the number had gone down to. i said "9" - which was only because i was a little more used to the pain, not because of the morphine working. they still said, "9? how can that be. what was it before?" i said "10". still, they moved on and then finally sent me up to my room that would become my home for the next 3 days.

my morphine pump continued to not give me any relief that day or the next morning. i kept complaining to the nurses that it wasn't working. one nurse said, "did you forget that you have a big 6 inch cut in your belly? you're always going to be in some pain." the morning after the surgery, a nurse made me get up and walk. that was excruciating. it was so painful. she was a west indian woman, and i think she probably assumed that she could be rougher with me than she could with non-west-indians. i was hunched over, barely able to stand putting one foot ahead of the other and she yelled, "you're walking like an old lady". i said, "i feel like an old lady". she looked at my age on my hospital band and said, "my daughter is only a year younger than you. you're young!" she made me go to the bathroom and then sit in a chair. she wouldn't let me get back into bed. i just sat in the chair and cried like a baby. just then, like an angel, a nurse from the pain management team showed up and asked me how i was doing. i told her that the morphine pump wasn't helping at all. i couldn't stop crying. she said that this happens to a lot of people and she would take me off of it and try percoset. thank God - someone was listening to me!

the next 2 days got better. the percosets were a much better pain medicine for me. i started walking a few minutes each hour. on the 3rd day, a medical student took my bandages off of my incision. he was such a big, 'green' student with no bedside manner. he was poking around my belly and then the chief resident finally asked him why he was doing that. he said, " i just want to feel if there's any tenderness." the resident said, "she has a big abdominal incision, of course she's tender. you need to be gentle with her." these people need to not practice this stuff on real people! it was so nice to take a shower once the bandages were off. it was very weird, however, to see the staples that were holding my cut together. my cut looked like a long metal grin.

on the 3rd day after surgery, my staples were removed - it hurt!, but it was bearable - and i was discharged from the hospital. i didn't want to go. i think it was a little too early to leave. the hospital bed was such a big help for sitting up, eating, talking as it moved up and down, so it was a big shock to leave it. also, the nurses were so attentive, and all the meals were provided like clockwork, so it was very hard to leave that state of being spoiled to go home to reality.

it's now the 4th day after surgery. my stomach is so sore. the incision really hurts today. i haven't had a bowel movement since before the surgery so i also have gas which is quite painful. i'm looking forward these next 6 weeks off of work. i had imagined that they would be just filled with relaxation, but i see now that these are going to be difficult days of managing pain, learning to get up and move around without stressing my incision and eventually learning how to use the muscles of my stomach again.