Forum
September 3, 2006 — EclecticGeekStarted a Fibroid Discussion Forum at Oprah.com! Visit when you get a chance.
For those who can’t fathom the idea of leaving this site, I’ve created a little Fibroid Forum right here. I set up separate entries to answer questions pulled from comments across the site and search queries. I’ve also included entries that aren’t really questions but seem to generate comments.
Important: Please read the Comment Guidelines before posting!
Questions have been divided into categories and assigned to appropriate pages. Click the link to visit that page of related questions:
- General Information
- Symptoms
- Treatment
- Pre-op
- Post-op Recovery
- Fertility
- Related Problems
- Life
- Speak Out
- Odd Humor
If you have a question and do not see it listed or have a suggestion for a new discussion thread, leave a comment here.
Need to reach EclecticGeek?
Visit the Contact page.
September 10, 2006 at 11:48 pm
Has anybody but ANYBODY managed to heal themselves of fibroids naturally?
I’m talking no medical or surgical intervention…but mind-body healing, herbs, therapeutic vitamin doses, massage - whateva!
With 20-odd years to go before menopause, I would love to cure myself of this condition once and for all…any advice hugely welcome.
[Edited by EclecticGeek. Follow this question in the alternative therapy thread.]
September 11, 2006 at 1:16 pm
This is a common question and I will have a separate post dealing with it (hopefully, in the next day or two). Until then, I’ll leave a link to my comment where I found some info on alternative fibroid treatments (vitamins, herbs, stress-reduction). Once I get the specific post up, I’m sure others will chime in with personal experiences. As a precaution, make sure you find out all you can about any therapy and talk to a health care professional before starting.
September 11, 2006 at 9:45 pm
Hey thanks, you!
This link (scroll down the page) may also be of interest:
http://www.earthclinic.com/Remedies/molasses.html
I wonder if anyone else has tried blackstrap molasses as a cure?
Cheers so much for your friendly, fact-filled fibroid site!
Charlotte, NZ
September 12, 2006 at 3:54 pm
Glad that link helped. Hadn’t heard of blackstrap molasses as a cure. From the Wikipedia link, I found these two:
Health Benefits of Blackstrap Molasses
Nutritional Facts and Analysis for Blackstrap Molasses (allows you to adjust serving size)
Here’s another one of my comments. This one explains my process to evaluate online alternative fibroid therapies. It includes a few links from the National Center of Complementary and Alternative Medicine.
Thanks for your kind words.
Cheers!
September 13, 2006 at 5:57 pm
Has anyone else had any problems with deep vein thrombosis? The weight and size of my growth is so big now and is pressing on my veins/arteries. I have had two clots in my legs and have been put on Warfarin (the rat poison!!! - how did they find out that worked?!!!) and I have just spent 2 fun-filled nights in hospital with the suspicion it had travelled to my lungs (phew, it hadn’t) but I really don’t want to have any more problems. In addition I have to come off the Warfarin and go on stomach injections (ughhh!) for a week before my op in 2 weeks!! Any suggestions/comments would be appreciated.
[Edited by EclecticGeek. Follow this question in the deep vein thrombosis thread.]
September 13, 2006 at 7:19 pm
Any one have post op infection [after (abdominal) myomectomy or any other procedure]?
Again, it pays to know your body and question anything out of the ordinary. If it dont feel right …it usually isnt…..
Yet another story in my AM recovery……
5 weeks post abdominal myomectomy..was feeling better except I was having this burning pain around my navel and down the left side of my abdomin for the last week …called doc’s office friday and talked to the nurse (they are gems) ….hummm “maybe your ovulating” nope I know that twing…temperature? no.. problem urinating…nope …It this just part of the healing process?……unless you are having doubled over kind of pain - its probably normal….ok… ( I told myself it doesnt feel right). …well see how you feel over the weekend (Doc was in surgery) and go to ER if it gets worse over the weekend and call back Monday. Didnt get better….
[Edited by EclecticGeek. Visit the post-op infection thread for the full story. :-)]
September 13, 2006 at 11:20 pm
Charlotte:
The alternative therapy thread is up.
Ann-Marie:
The deep vein thrombosis thread is up.
fibroid free:
The post-op infection thread is up. Since your comment here is so informative, I would like to see it in a comment in the new thread. So you won’t have to type it all over, either you can copy and paste it into a new comment or I can after you post something there. I’ll leave it up to you. Thanks!
September 15, 2006 at 3:32 am
Hi, I’m having an exploratory hysteroscopy next week. Can anyone share their experience with the procedure with me? I am very nervous. Thank you. Anne
[Edited by EclecticGeek. Follow this question in the hysteroscopy experience thread.]
September 16, 2006 at 9:30 pm
Hi Anne,
I was nervous about my hysteroscopic myomectomy (also involved a camera). The hysteroscopy thread is up and there you can find links to the posts about my experience.
September 30, 2006 at 5:05 pm
So I found out I have large fibroids. Have an ultrasound Tuesday to see what is really going on. Have been bleeding, constant pain and discomfort and cant have sex without the assistance of hard core pain medicine beforehand. That is the killer. Used to be one position that hurt but now they all hurt bad. Doctor didnt discuss options other than the Abdomial Myemectomy as she knows I want to have more children ( I have a two year old and am only 30). What I want to know besides just seeing what others have found in coping with sexual problems arising from these, is- Do they automatically test for cancer? She never mentioned that word either, but it is nagging me.
[Edited by EclecticGeek. Follow these questions in the sex and fibroids thread and the fibroids and cancer thread. You can also read the experiences of other women in the Abdominal Myomectomy thread.]
September 30, 2006 at 11:33 pm
Hi Joyous,
Apparently about one case in 800 turns cancerous according to my surgeon. Mine has undergone rapid growth lately which can be a sign. Bummed to hear about the pain during sex for you. Check with your surgeon but I imagnie they test any tumour tissue removed surgically for malignancy.
Good luck and keep us posted!
xxx charlotte xxx
October 1, 2006 at 9:47 am
Hi Joyous,
I am on week 8 recovering from an abdominal myomectomy and I found it extremely difficult to cope with the sex part….sex…sex?? what was that ??? LOL FOr me when you are tring to get pregnant (before I knew about my ‘broids) and trying to fit sex in along with 15 day periods and the 2-3 days on either end of the period as BLAH days (”You know its coming” or “your glad its going” days)…it was difficult becuase I was always tired or in pain during that one “OPEN WEEK”. But…my husband was very understanding…actually worried becuase he knew I was in so much pain….we tried the pillow (because my back aches all the time) under by hips tilted my big heavy fibroid laden uterus even more..ouch….my back. Climbing over my “Budda belly” like a rock climbing expedition became tiresome …lol ..I didnt have any other solution around it but surgery, laughter and promises if “swinging from the rafters after surgery”…. (he still reminds me of that….LOL)…and I say ok hun let me get my tool box and start on that project….LOL it will get better
But seriously your cancer question - I had fibroids that grew extremely fast and extremely large also….My doctor did not initally talk about cancer as well….once I had all the test results (MRI, Ultrasound, vaginal ultrasound, CT scan) then we talked about those things….I think your doctor did the right thing by not bringinig it up now.. WHY??? I assume you just had a physical exam where you could feel the fibroids, right??? she does not have test results to even have a reason to say the “C” word or talk to it - you can have fibroids, or polys or ovarian cysts, endometriosis, adeomysis …so once you get the results you will be able to have a sound discussion with the doc to address exactly what is going on- get together a list of questions to ask your doc next time you go…
My doc did 3 things:
performed an endometrial biopsy prior to surgery to check for cancer. I had a submuccosal ‘broid (protruded into my uterus).
Had a GNY/Oncologist on “call” during surgery (I aslo meet with this doc prior to surgery) in case there was cancer found during surgery - there would be a specialtist there to handle it
during surgery - all fibroids that were removed were sent automatically to pathology test for cancer ….everything came back fine
If your doc does not bring it up - you should- So here are some idea’s for questions
Ask doc about the statictis/risk of fibroids and cancer
Will a endometrial biopsy be performed?
Will a cancer screen be performed on each fibroid removed?
If not all fibroids are removed, will they be checked (tissue sample taken) as well?
Hey throw in the whole ovarian cancer questions as well if you still want kids
Hope all goes well on tuesday
October 12, 2006 at 8:43 pm
Joyous:
I hope all went well with the ultrasound. I put up two new posts here in the Forum:
Are uterine fibroid tumors a sign of cancer?
Sex and fibroids just don’t go together, now do they?
I don’t know if you’ve found this thread yet but you can read about other experiences here:
How are you feeling after your Abdominal Myomectomy?
If you have other questions or thoughts, feel free to post them!
Charlotte:
I often wonder about the rapid growth of fibroids. What are the factors that trigger this? I’ve heard of stress as a possible cause. I actually believe this is what happened in my case. Must add fibroids and stress to my long list of future threads.
fibroid free:
Once again, what’s with the rapid growth? Glad you had a specialist at the ready to handle your case. Really glad the doctor wasn’t needed.
October 14, 2006 at 8:26 pm
Looking for any advice before I have an abdominal myomectomy. It’s coming up in just two months. I have read many of the posts, and can’t seem to stop logging in each day for new information. Thank you, thank you, thank you, everyone, for all of the honest thoughts. It’s like all the stuff your doctor, if he is male, can’t possibly understand. Maybe doctors should read this site so they can better prep their patients.
Down to 135 and 5 to go. I have found that losing the extra weight has really helped with my energy. Any other pre-op advice, and any thoughts on what to expect in that operating room would be very, very helpful. Again, this site ROCKS!!!
Anyway, I’ve known about my fibroid for about 4 or 5 years…could be off on that, but only because I never was very good at keeping track of things that would…turn out to be something I should have kept track of. Anyway, after an ultrasound from a new gyn (the other was a retard) he informed me I had a fibroid the size of (no fruit) a major league baseball. He asked about symptoms - pain, awful bleeding, fatigue, to which I replied: none. Only one thing: I keep going to the bathroom at lot at night. Now mind you, I told him this completely out of context one visit, and he told me it was all about gravity. I’ll leave it at that, because it made no sense to me either. His best advice: if no symptoms, leave the fibroid alone and take a “wait and watch” attitude.
Well, I waited, we watched, and again, I told him, no problems. I would go for my annual pap and feel everything was great. I went on Yasmin after meeting someone (didn’t want a pregnancy in my forties), but after a couple of years on the stuff, I found my boobs were way too tender, and though my periods were light and regular, they lasted the full 7 days I used the dummy pills. So, in 2005, at the age of 46, I said good-bye to the pill. I knew my period would take a while to adjust. And that’s also when I really began noticing something was rotten in the state of Denmark.
I had weight gain. Okay, I was a little less active, but in the summer of 2005, I resolved to get really, really back in shape, and at 5′7″, got my weight to about 130 lbs. Still heavier than I’ve ever been (I used to hover around 123 - 125), but I wasn’t dancing as much (I love ballet and used to stomp away at Flamenco). I noticed a few other things I assumed were perimenopause: night sweats, frequent trips to the bathroom (now daytime too, but constant at night) dry skin, and after summer, weight gain. I also began feeling tired. Here’s the kicker. Just before my period, I would sometimes get a knife-like pain in my left side. It wasn’t pre-menstrual cramping. Something odder. I also had this feeling of having a big rock in my lower abdomen; a heavy feeling, that never went away. I could do a zillion crunches, and get a lovely “three-pack”, meaning I could only get definition at the rib cage area. Below that, it was like someone stuffed a pillow in my stomach. So, I pass on the fact to my GP that I go to the bathroom a lot. She prescribes Detrol. After two or three weeks, no change, so I stop taking it. I’m exhausted each morning (I have to be up at 5:00 am at work by 6:30 am) and I come to the realization that it’s because I wake up four to five times each night to go to the bathroom. I tell my GP. She prescribes Ambien, and for the first time in months, I sleep like the dead. I am cured!!!. So I think.
I still have to go to the bathroom during the day, and now I get to add frequent periods. I start keeping track of my start dates. The time in between the start of each period shrinks from 26 days to now just 20. I can count on the calendar and know in about 20-23 days, I will have another period. The first day: gushers. I switch to super-plus and a pad. Then by day three, barely anything, but I pass clots, and the bleeding, then spotting won’t stop until day 7. So I go to my GP and finally, I say the right words: can you give me a full physical and a referral for a gyn? My old gyn is far from my house and, to top it off, sent a letter to all of his patients that have a certain insurance company (that will remain nameless), that he would require full payment before he submitted a claim to company. Seems this company (even though I have state employee, super duper Preferred Provider stuff) was stiffing the doctors. So he left their network.
When I went in a few weeks later for my full physical, I asked that she go ahead and do a pap and check my fibroid. I told her my last gyn did an ultrasound, and I have one, and I want to know if she can feel it.
Oh boy did she. I go the referral, made an appointment for a month away with this new gyn, but I just couldn’t wait. I went to one of the gyn’s in her office, he did an ultrasound, and my once baseball size fibroid was now a “grapefruit”. I still kept my appointment with the other doctor, who, luckily, had a cancellation and took me the following week.
We consulted. He tried to get my ultrasound from the last doctor, no luck, so he sent me to have another, and this time, read by a radiologist. Smart idea. I have a 7 cm fibroid, only one (as far as they can tell), but it is transmural. It it taking up most of my uterus.
My new gyn goes through my options: hystorectomy (nope) UFE (nope, not for me) and abdominal myomectomy. I say, yeah. But before he takes me at word, he suggests I go to a specialist in laproscopic myomec. to see if a less invasive alternative may be an option. I was very happy that he made the suggestion. He gave the name of a top doctor, I went in ($400 and my insurance wouldn’t cover it) and had a chance to get some very practical, sound advice. It was the best hour and a half I ever paid for. He gave me the pros and cons of each method and to what to watch out for (apparently there are some doctors out there who like to brag to each other about giant fibroids they’ve extracted laproscopically. Dangerous, to say the least, especially if they are not skilled). He told me to donate my own blood, get in the best physical shape I could (after surgery, one uses muscles they don’t often use to compensate for the sore tummy), take iron supplements and go with a traditional ab. myo. due to the size and position of the fibroid. He said he would write up his opinion and send it to my gyn. He also stated he would be available for the surgery if my own doctor was not.
At my pre-consultation October 2nd, my gyn went through the report sent him after my visit with the specialist. I told my gyn. that wanted the ab. myo. and he agreed that was a good idea. I will start donating my blood November 1 and again two - three weeks later - to get two units. I am scheduled for December 8th. I have my ride, my sister-in-law ready to come and stay for a week after I get out of the hospital, and I am sticking to an iron rich diet. I am working out voraciously. I have dumped 10 pounds. Oh, during that full physical with my GP in August, had gotten up to 145 lbs.!!!
Wish me luck in December!!
I must sign off. My little Westie is in the front yard, no doubt terrorizing some other dog that is walking by.
October 15, 2006 at 9:53 am
Val
Glad you found the right doctors - it is sooo important
Check out the forum (if you havent already) How am I feeling after my abdominla myomectomy. THe AM gals detail pre op “to do’s” The hositpal stay, going home and week by week recovery - in detail!!! If you have a quesiton just ask adn you will get an answer…
I am 10 weeks post op and life without my 6 grapfuit fiborids is wonderful….
Pre-op you are doing the right things….make sure you get enough iron (I took the slow release iron pills that did not cause GI effects -ie consipation, etc) donated blood but did not even need it….
You can check out an actual abdominal myomectomy surgery (not for the faint of heart) on ORLIVE.com. Helped me to understand what woudl happen
I will post some pre-OR room info on the AM Forum
[Edited by EclecticGeek to add links.]
October 20, 2006 at 4:58 pm
Does anyone have experience with Neprinol, Fibrovan, Brevail or Protease? Understand that these are homeopathic and not approved by the FDA. They proclaim to shrink the fibroid through enzymes that “eat” tumorous protein. Sites to visit are: http://www.arthurandrew.com; http://www.fibrovan.com. Nonetheless any annecdotal information? My wife has one large fibroid and we’re considering all options. Thanks for your site and input
October 20, 2006 at 7:47 pm
Hi. Ok, I guess this is the place to be to ask questions about fibroids, yeah!
I am 32 years old, and have been having ‘fibroid’ related problems for the last couple of years. Well, I went to my doctor last year (December) for my annual, and told her about my heavy periods and spotting, she ordered an ultrasound, which revealed an annoying fibroid. I had just begun nursing classes that January, so she said we should just watch and wait to see how things go while I am in school. She wanted me to have a follow-up ultrasound, which I did last week, and apparently the fibroid has doubled in size in approx 9 ish months, which the doctor finds worrisome. My current semester doesn’t end until Dec. 7th, so the doctor wants to schedule an endometrial ablation for Nov. 10th to by me some time she said. Meanwhile, my husband and my parents are totally freaking out. I don’t know what to do. The doctor said she didn’t feel comfortable waiting until December to do something, but I can’t help but think how is an ablation the answer? I asked her that and she said if it is benign it will shrink and if it is not it won’t. I have read countless amounts of information for the last two days and can’t find anything about that.
I don’t know what to do. My husband wants me to just have it removed and tested immediately, but my doctor doesn’t want to intefere with my school schedule too much and thinks it would be ok to do this other thing until December…. What is your opinion???
Amour
October 21, 2006 at 6:42 am
From all the reading I have done about fibroids is that in the majority of cases they are benign although I think everyones first reaction when they have a tumour growing inside them of any size is to think the worst. Try not to panic yourself into doing anything rash. I did not know I had a fibroid (just thought I was getting a bit fat!) and had no specific symptoms (until it got big enough for me to go to the doctors…thought I had “stomach problems”
but I must not have had it for that long (I have a 2 year old and it didn’t show on any of my pregnancy scans). My fibroid was a whopping 17×15x12cm (ish) and grew between the scan and the op. Apparently your hormones can play havoc with the growth and they can grow really quickly (apparently quite rare though according to my surgeon). If you trust your doctor try and go with their advice…good luck and stay strong! Ann-Marie x
October 26, 2006 at 3:42 pm
Val:
will be better. Fortunately, I’ll also be able to post about my weight loss. Thanks for the compliment about the site.
Glad you found the post-Abdominal Myomectomy thread. You mentioned weight and added a frowny face. Once I start posting about my weight gain, I think this face
fibroid free:
Weight gain/weight loss posts are coming. I promise!
Tom Schmidt:
I posted your question in the alternative therapy thread. I believe someone there had an experience with Neprinol. Thanks for being a source of support for your wife.
Amour:
Ann-Marie gave good advice. I have a couple of posts that I hope you find helpful:
Are uterine fibroid tumors a sign of cancer?
How are you feeling after your Endometrial Ablation? (Please see the links in the post.)
If you have any additional questions, please post them.
Ann-Marie:
Thanks for the advice and words of encouragement.
October 26, 2006 at 4:37 pm
I know….you are a busy busy busy bee!!! THanks for all the behind the scene stuff!!
November 10, 2006 at 3:04 pm
Hi, I tried to submit my comments but ended up writing a lot and at the end
did not work, so I just doing these few line and see if it works, and I will
get back with my history.
November 10, 2006 at 3:24 pm
It worked!Hi All!
It’s been very comforting to read all your comments and I’m glad that I’ve found this website just a few days ago, as a result of a search for help to all the concerns that I have about the post-op of a Myomectomy.
My Myomectomy was done October 20th, and luckily thanks to an excellent doctor, I went through all the list of pre-op recommendations that Fibroid Free suggested, and I thank you girl in the name of many women out there that are due for their surgery and get lucky enough to visit this site and take in consideration all your recommendations, because they are very precise and so helpful.
I’m on my 3erd week of recovery and I’m still very sore, not much the incision but the skin above it and the sides. As Ele said, I have also the bump above the incision very sensitive to the touch as well as the area below the incision. I’ve been having such a horror thoughts about the bump not going away, but as one of you guys mentioned, I expect to see it gone by the 9th week, and I really hope so.
I’m going to tell you about the emotional impact on me, and how frustrated and hopeless I’ve been felling this last day.
I will start since the beginning, just the thought of going through surgery made so sick, I cried so many nights and I was in denial for quite a few months.
I was diagnosed with fibroids 2 years ago, accidentally due to a Cat Scan done for a sharpe pain in my upper addomen (ended up being essofagitis). When I had the follow
up with my gyne I learned for the very first time what It meant to have fibroids and what they were. Since I did not have any syntomes (I would have never known if was not for the CAT) I was told I could leave with them (one was 4cms and the other 2cms). Ok, so the next year when I saw her again, my gyne did and ultrasound and she gave the spill that “it was time”….. and I said time for what….. when she mentioned
Hysterectomy! Oh my God, My world collapsed in from of me and she gave me this
b.s. (excuse my language) about my uterus being useless bag, fi it was not for reproductive purposes. And here you have me, never had children and still having the
hope (I was 39). I left the office in distress and in terror. I had weeks of dispair not knowing what to do, until I started educating myself over the internet.
Miraculously, I found and old friend of mine, gynecologist and fertility treatment doctor
with his own clinic en los Angeles area and I contacted him right away. He got back to me and saw me the following week and game me the piece of mine that I needed, that nobody was going to take my uterus away from me and if I needed any procedure, He
was going to do it for me just to remove the fibroids nothing else . Just to let you know he cursed the ex-gyno saying that we should be careful out there with doctors we think
we trust and always get a second or third opinion. He said to me that even though having children was not in my list, since I did not have any, with more reason my
uterus should be preserved and treated accordingly.
This visit with him was last March and from then on, ironically the syntomes of pressure over my bladder started but I kept pushing it (for fear) until I could no more
and the rest is history.
The thing is that I never realized that the worst part is the recovery rather than the surgery itself.
November 10, 2006 at 4:22 pm
Norma,
Sorry you had problems posting the first time. Glad you got it working.
Thanks for sharing your experience. It’s good you were able to find such an excellent doctor. I just can’t say enough about my two fibroid docs. That really does make a difference. Recovery can be rough but the women in the Abdominal Myomectomy thread are there to lend a hand and a smile. There is a lot of info in there for women both pre-op and post-op but you know that. If you want to talk more about your emotional impact, there’s a thread for that as well.
How are you feeling after your Adominal Myomectomy?
What makes you mad, sad, or glad when you think about your fibroids?
Reading the stories of others dealing with fibroids lets me know that the world is FULL of strong, smart women. Thanks again for posting and best wishes with your recovery.
November 10, 2006 at 6:24 pm
H Norma,
Glad you found the right doctor!!! come and join us on the AM thread…those recovering from surgery, those going to surgery and all the good and not so good expericenced…if nothing else you will get some laughs ….
November 24, 2006 at 12:15 pm
I had a Myomectomy in July and things have been good. The only thing is is that I have been having these pulsating sensations right before my period and now my period has skipped. I was wondering if anyone has been experiencing abnormal or infrequent periods?
November 24, 2006 at 7:07 pm
I just had a myomectomy on November 13th, 2006. After a two night hospital stay and almost two weeks since the surgery, I feel suprisingly good. My surgery went very well. My physician removed a 7 1/2 cm fibroid and five small ones. The first few days were uncomfortable and I had pain especially when I laughed or coughed - try avoiding these things at all costs. (It wasn’t easy to do especially when my sister had to assist me in wiping my bottom. That’s love.) I’ve had some constipation because of the pain medication, but am weening myself from that. I was up and about the first night after my surgery. One week later I was able to conduct a choir rehearsal sitting down. No lifting and no stairs for a while. I take a very short walk, 10 minutes up the road and back, every day and can do non-strenuous house chores. I had my first visit with my doctor one week after and she told me to take it easy and to give my body time to heal properly. No baths, no swimming. Her basic advice is if it hurts don’t do it. I find I have about a three hour limit right now and then I’m tired and want to lay down. After a whole day without any pain medication, I find I feel the incision and it’s still a little painful. Over all I am pleased with my progress and so excited about how I will feel once I am healed! After three years of having basically one good week out of the month, I decided this was my best option. Reading the forums encouraged me and I thank all of you willing to share your stories. It is a very confusing condition and unless you experience it, it’s difficult to explain.
November 25, 2006 at 5:24 pm
Crystal:
Not sure which type of Myomectomy you had but there are three threads here:
How are you feeling after your Hysteroscopic Myomectomy?
How are you feeling after your Laparoscopic Myomectomy?
How are you feeling after your Abdominal Myomectomy?
You can post your question there. The specific threads get more traffic so more people will see it. If none of the above help, come back here and let me know. I’ll try again.
Lisa:
Happy to hear that your surgery is over! Say “hi” to your sister for me. She was really providing assistance, huh?
That one good week out of the month you mentioned sounded quite familiar. I called it my “quarter of a life”. Definitely, not fun. It sounds as though your recovery is going well. Yay! I’m glad you found encouragement here. It does help to read the experiences of others. Thank you for sharing yours. Best wishes.
November 28, 2006 at 9:45 am
Wow…..I’m so glad to find this site. ( better late then never)
I was hoping I could ask a question.
I’m 47 and had my UFE done on Oct. 11th. My first period started 2 days after the sugery and lasted 12 days. It was very heavy, passed many clots and was painfu.l My second period started Nov. 13th and 16 days later I’m still bleeding!!! ( now, lightly)
I was wondering if anyone has had this experience?
Has anyone gone into menopause post sugery?
Thanks.
November 28, 2006 at 7:25 pm
Are there any women out there who can tell me how to endure pregnancy fibroid pain?
I’m 7.5+ months pregnant with at least 8 fibroids, 3 of which are just over 5.7 cm each and growing. They were all discovered when I became pregnant. Most of them don’t bother me but two are crammed down at the bottom of my uterus just over the birth canal. The pain from those two is so bad I haven’t slept more than 3.5 hours in weeks.
The Dr. says I am experiencing ‘degridation’ as the fibroids grow which sends a chemical into the body causing this unbelievable, constant pain. For the pain, I take frequent warmish baths, stay in bed and take Tylenol which does very little (if anything) but I’m told that Tylenol is the only pain killer that’s safe for the baby.
First - Have any of you experienced this kind of extreme pain during pregnancy?
Second - What can I do about it ?
I’m sure I’ll survive this … women are tough. But, I’d like to be able to get out of bed and enjoy a little bit of sunshine in the next two months. Heck, just having a short break from the horrible pain would be a blessing. Frankly … at this moment 8 hours of labor sounds like a cakewalk compared to months of this. =)
Your input is quite welcome.
November 29, 2006 at 1:26 pm
I just came across this:
“Kuei-chih-fu-ling-wan (Keishi-bukuryo-gan; KBG) is a traditional Chinese herbal preparation that can effectively shrink fibroid tumors in 60% of patients, according to one study conducted by Japanese scientists. KBG is a mixture of the following herbs: cassia bark (Keihi), herbaceous peony roots (Shakuyaku), peach kernels (Tounin), herbaceous fungus (Bukuryo), and root bark of peony (Botanpi). In addition to reducing fibroid size, KBG also successfully alleviated fibroid symptoms such as severe menstrual bleedings or menstrual pain in 90% of the women in the study. These researchers suggest that KBG may work by inhibiting the production of sex hormones including estrogen. Unlike many other presently available herbal preparations that may be effective but lack scientific evidence to support their uses, KBG is proven safe as well as having few side effects”
Anyone heard of this or tried it?
Thanks!
Pam
November 29, 2006 at 3:31 pm
I just found out I will have a myomectomy!!! My pain from fibroids can get off the wall. I have been told I will start Lupron soon. Anybody got any info on it? Is there certain days of cycle to get injections, is injection the only way to get Lupron? How long after Lupron until I can have surgery? How long after surgery until I can try t o get Pregnant? PLEASE, If anyine has info to any of these questions, I’d love to know. It will be 2 weeks before I tlak to my doc again. I am not that patient!
Thanks a million, in advance!
Babs
November 30, 2006 at 8:13 pm
Pam:
I found an abstract to a paper about KBG and posted about it in this thread:
Is there a natural alternative therapy or treatment for uterine fibroids?
Babs:
I answered most of your questions here:
That very last Lupron injection in April
For myomectomy experiences, try here:
How are you feeling after your Abdominal Myomectomy?
How are you feeling after your Laparoscopic Myomectomy?
How are you feeling after your Hysteroscopic Myomectomy?
Keep posting if you have more questions.
November 30, 2006 at 8:49 pm
Judy:
I answered your questions here:
How are you feeling after your Uterine Fibroid Embolization?
Anna:
Sorry you are dealing with so much pain. I started a new thread based on your questions. If someone has an experience, they can post it there. If you have additional concerns or thoughts, you can put them in that thread.
Is anyone having problems with uterine fibroid pain during pregnacy?
Let me know if you have other questions.
December 10, 2006 at 8:03 pm
Hi Pam,
I have heard of the Chinese herb Kuei-chih-fu-ling-wan . You can read about it on Dr. Parker’s Website at:
http://www.fibroidsecondopinion.com/conservative_treatment.htm
December 13, 2006 at 6:48 pm
Hi Wendy,
I added your comment here:
Is there a natural alternative therapy or treatment for uterine fibroids?
Thanks for the link.
An abstract to the paper listed in Dr. Parker’s Reference List can be found here:
Pharmacotherapeutic effects of kuei-chih-fu-ling-wan (keishi-bukuryo-gan) on human uterine myomas.
December 15, 2006 at 2:08 pm
I am 38yrs old. I am a mother of a 19yr old and a 8yrs old. I have recently had 2 miscarriages and I am 13 weeks preganant. I was just told I have at least 8 fibroids. One is measuring at 7cm. I purchased the following herbs; Red Raspberry Leaf, Nettle Leaf, Dandelion Root, and corn silk. All of these herbs are in the tea bag formula. Will they shrink my fibriods? Are do I need another herb? Someone mention Flax seed oil? I don’t know what to do. Can you please help me.
Thanks,
April F
December 17, 2006 at 7:14 pm
Hi April,
I’m so sorry to hear of your two recent losses. I have a post about alternative treatments:
Is there a natural alternative therapy or treatment for uterine fibroids?
You’ll find information on how to evaluate treatments plus comments from others. I posted your questions there. Remember to check with your doctor before starting any type of therapy.
December 22, 2006 at 7:37 pm
Hello,
I have not written in a while. I have switched doctors. The first gynocologist I went to wanted to do a myomectomy right away but I was concerned about my anemia and other things. I switched to a doctor who also specializing reproductive endo. On Dec. 20 I had an operative hysteroscopy. My new doctor is very through and requested all medical records before treating me. He also recommends a myomectomy but wanted to see if I had fibroids inside my uterus. The ultrasound only showed 3 small tumors but my uterus is the size of a 4 month pregnancy. Well, I had the operative hysterocopy and he did find several fibroids. He removed a few but he did tell me today there is a large one and he resected some of it but that it is attached to the main blood vessel and the uterus. So I am wearing a Foley catheter for 7days to reduce scar tissue since I want to have children one day. I have none now. SoI know I will have another hysteroscopy again but I am glad I have a patient and skilled doctor. I hate having to wear this catheter over the holiday but my health is first. He wanted to do it a few days after my period. I hope everyone has a Happy Holiday. I will be glad when all of this uterine stuff is dealt with so I can heal and prepare to have a child.
December 23, 2006 at 10:22 am
How do I join this blog? Thanks very much.
December 23, 2006 at 3:01 pm
Hey Tameka,
I was going to tell you to visit:
How are you feeling after your Hysteroscopic Myomectomy?
and contribute your experience in that thread but you beat me to it.
I responded to your comment over there. Thanks for sharing.
Welcome back and Happy Holidays to you, too!
December 23, 2006 at 3:21 pm
Hi Bonnie,
Glad you found us! Nothing to join. Tell me what’s on your mind (symptoms, treatment, etc.) and I’ll point you to the right thread. Once there, you add a comment just like you did here. I’ll leave a couple of examples for you to visit so you get the idea:
Uterine fibroid symptoms (not my idea of fun)
Talks about the symptoms but since it’s one of my earlier posts it has lots of comments from visitors.
Just what are your uterine fibroid treatment options?
Lists the options plus it has links to the posts on-site where women are discussing their experiences after treatment (How are you feeling after your…?).
Also, the Home page explains the site some (or at least I hope so).
Don’t hesitate to come back with questions. We’ll be here.
January 18, 2007 at 1:21 pm
Hi EG,
Might be a great idea to start a topic on excessive bleeding? Maybe how to control, etc?
[Edited by EclecticGeek to add: I created a post on managing heavy menstrual bleeding.]
January 18, 2007 at 6:46 pm
I just found out I have ENDO after walking around in pain for 6yrs..I tried NORETHRINE.I think my Dr was trying to kill me glad I didnt do NUPRON shot.I am now taking FIBROVAN and PROGESTERONE cream.I find it to work great..I also take fish oils.Keep the colon clean it helps and when all else fails I do the Motrin and hot showers. I am close to menopause so I feel lucky.. I feel for the young women out there who have ENDO it is a monster..Keep researching you will get there just dont do Synthetic hormones..also remove as many products as possible that contain PARABENS…lotions detergents etc………
January 18, 2007 at 6:55 pm
If you are having excessive bleeding I take it you have fibroids.I really suggest FIBROVAN..Try it it isnt that costly and also try Progesterone cream,find a good one..Stay away form products with Parabens in them..You can clear this up without a HYSTO if you are smart…Hope it is not to late for you…………
January 18, 2007 at 7:21 pm
Pam:
That is a great idea! I’m trying to catch up with comments (again!) but I’ll put it on my list as well as a “Watchful Waiting” treatment thread. Thanks for the suggestion.
[Edited to add: I have new posts on managing heavy bleeding and on the "Watchful Waiting" fibroid treatment option.]
Debra:
I have a post on alternative therapy where we are discussing the SCIENCE behind various treatments. You can add your thoughts there:
Is there a natural alternative therapy or treatment for uterine fibroids?
Keep in mind that there are NO clinical studies on Google Scholar or PubMed demonstrating the safety or effectiveness of Fibrovan and it isn’t approved by the FDA for anything. From Fibrovan’s site:
My site is science-based and I’m inquisitive. Do you have tangible evidence of anything you stated? If so, please share. Thanks!
January 18, 2007 at 7:32 pm
I dont need any tangible evidence ..I can only go on how I feel.I took Norethrine and it was only for 2 days I thought my chest was going to cave in..It is nothing new they have been telling us ladies for yrs. that synthetic hormones are no good .We only listen when we come up with Endo, Fibroids and other hormonal problems..If there was a study on Fibrovan which the Medical Dr’s are not willing to try I believe you would see that it works..I am not crazy as they have said for 6 yrs.This stuff works and has slimed down my belly quiet a bit..I do still have flare ups dont get me wrong, but I have only been on this for a couple of wks..If you are in enough pain and you have tried everything else without success..YOU WILL TRY THIS…Do you have ENDO or Fibroids if not you can not possibly know the pain and destruction it causes..It took me 6 yrs to find out what was wrong with me..Thank GOD I dont have fibroids just ENDO..It is a monster
January 18, 2007 at 7:52 pm
That’s the point. Doctors won’t suggest it because there are no studies to prove it works. You should suggest to the makers of Fibrovan that they conduct randomized, double-blind, placebo-included studies and then publish the results in peer-reviewed medical/research journals. I guarantee that if the results turn out to be positive, doctors will take notice.
If you would take a moment to read the Welcome page or the About page, you will notice that I’m the “inquisitive geek with fibroid tumors” and this is my blog. I suffered for close to 10 years (heavy bleeding, severe anemia, tremendous pain, etc.). I really appreciate the women who come here and share their personal fibroid experiences. I learn a great deal from them. My main mission continues to be the SCIENCE behind fibroids and the treatment options.
January 18, 2007 at 8:20 pm
I cant believe ya havent tried it..They want do studies on herbal products they cant be FDA approved..Sorry but did not read the whole forum..I am a kinda busy lady..Glad though that someone is getting the word out. I have went back to everyone I had seen for the last 6 yrs to inform them of ENDO and their misdiagnosis…Maybe they care maybe they dont….Just finding out what I have has helped me I read that if he is any kind of GI Dr at all he will mention ENDO especially if ya tell him you are worse that time of the month..Dont put all your trust in the Dr’s they are so busy and so cold to the day by day complaints that they just dont get it sometimes…I am a nurse I see alot of mishaps in the medical field..If they were so concerned when someone went to the ER for pelvic pain instead of telling them it was gas and nerves and send them home,they should mention ENDO or Fibroids…They do a chest x-ray when ya have chest pain..It is a dog eat dog world…Endo has taught me unless you are choking or having a heartattack etc they do not see your inner pain and alot of us keep it to ourselves because we get tired of complaining..Anyway dont belive you are going to find a cure for fibroids unless you do a hysto and then you will have scar tissue to deal with amongst other things…They cut my sister in law from side to side to remove fibroids and when they got in they saw the endo.You could have Endo also…Exactly what have they done for you?????CONCERNED
January 18, 2007 at 8:50 pm
If you would visit the alternative therapy post, you would see that there is research going on. The same US federal government that supports the FDA also supports the National Institutes of Health’s National Center for Complementary and Alternative Medicine (NCCAM).
There you will find grants/funding opportunities, published results, and clinical trials. There is nothing standing in the way of Fibrovan conducting studies and releasing the results.
I am so sorry that you have a negative view of the medical field. My recent experiences have been extremely positive. I consider my two fibroid doctors to be true blessings. They both are smart, highly skilled, and compassionate. You can read about my treatment plan on the About page and scattered throughout my blog. I am so much better now and feel half my age.
Take care.
January 18, 2007 at 8:59 pm
Then if the FDA cares so much why dont they do the studies..It is alot more to it than that trust me and I did read that the more advanced GYN are trying Fibrovan. I will try and find your info…….anxious to see what you went thru,when FIBROVAN might have worked..GOOD NITE MY FRIEND…Ya know it helps to get away from this stuff once in awhile…..
January 18, 2007 at 9:09 pm
The FDA doesn’t conduct the studies. The makers of the products conduct the studies and submit them to the FDA. Once again, I suggest asking Fibrovan why they won’t conduct any studies.
Thanks for your visits. Take care.
[Edited to add: You can post your findings in the alternative therapy thread. I'm looking forward to the additional information. Thanks!]
January 19, 2007 at 5:02 pm
Yes ask them and they will tell you..It is not as simple as you make it out to be..we have to take charge of our own bodies,cant always depend on someone else to have the answers…Esp. with ENDO or Fibroids….We are all different..You are not afraid to take a chemical drug but are afraid of an herb it dosent make sense….Sorry to disappoint you but it works for me….I am doing my own study………..
January 19, 2007 at 5:14 pm
Nothing YOU have to say disappoints me. I look for science. You present none.
I hope you are able to find a blog that focuses on endometriosis. I think your experience would be most helpful there. This blog is for those dealing with fibroid issues.
Thanks for your visit and best wishes!
January 19, 2007 at 5:32 pm
There isnt much difference its all the same..All due to Estrogen Dominance pretty much…You are to close minded or wearing blinders not sure which one….Good luck on your scientific adventure to cure a disease that has been going on for yrs…You failed to inform these women that havent had surgery that Endo is a good possibility…Be honest…You really dont know. Do you also need scientific proof that there is a GOD…. Experience is the best teacher……..BYE…………….
January 19, 2007 at 6:17 pm
No, I believe it’s called being educated. Endometriosis and uterine fibroids are not the same thing.
Thanks for sharing but again I ask that you find a more appropriate forum for your thoughts. I wish you well.
January 22, 2007 at 3:34 pm
Hi EG,
Had to say to you, I commend your diplomacy! Very impressive!
That was actually pretty entertaining! Took my mind off of my fibroids for a while! LOL
January 24, 2007 at 7:17 pm
Yeah I was impressed to….I’ll tell ya I know…fibroids and endo are NOT the same…maybe the same estrogen issue…but NOT the same…had both…
if FDA regulated Herbs…I would be more apt to try natural therapy (although I know lots of herbs have ben used for thousdands of years ) but until FDA regualtes .them.I will just wait……heck there is enough issue with regulation of drugs…
anyway kudos to the science behind it all!!!
January 25, 2007 at 5:00 pm
Hi FF:
Well said. As it stands right now, the science is our best chance.
January 29, 2007 at 11:38 am
Anyone have any good surgeons in NY? I’ve been to several - but need someone who really has an expertise. Thanks!
January 29, 2007 at 12:49 pm
Pam and fibroid free:
Both of you make me smile.
The funny thing is that she first commented on the Feedback page before coming here. So, while I was responding to her first comment, she posted a second. She then posted back and forth. (The tricks these people use.) Notice how certain words are capitalized. They do that so when this page eventually shows up in Internet search results, people are more likely to click on it because they see a keyword in capital letters. The highlight of the whole exchange occurred on the other page when she didn’t realize that insulin is a hormone therefore diabetes IS another disease condition related to hormones. Of course, if all else fails, fall back on the old “insult the blog owner by questioning her religious faith” ploy. Got to love it!
One last thing for those reading along. In case you are wondering why I look for studies/research. Here is the Google Scholar search for chocolate (Ummm, chocolate!). On this particular day, there are 113,000 entries. Type in your “miracle pill du jour” and take note of what comes back.
Science really is the way to go. One day, I’ll do more posts on the FDA and how to critically read research articles. I really would love to start an online journal club. It’s on my ever-growing list of things-to-do. Now, if I can just catch up with responding to comments…
Thanks to both of you for your continued support!
rcg:
Please check this post. It has comments from women discussing NY doctors.
How do I find a good local fibroid doctor?
January 29, 2007 at 5:08 pm
Hi EG,
Just a quick update. I haven’t had a period since November 19th!!! I’m so happy. When I DO start, I have the prescription for heavy bleeding. We’ll see, but right now, seems like my watchful waiting is okay.
Take care.
January 31, 2007 at 7:34 pm
Hey Pam,
That’s great news! Best wishes.
For those interested in the prescription Pam mentioned (Cyklokapron), visit this post.
February 2, 2007 at 7:21 pm
Three new posts are up!
How are you managing your heavy menstrual bleeding?
Are you following the “Watchful Waiting” fibroid treatment option?
…and because the original post-AM recovery thread has 640 comments, I created:
How are you feeling after your Abdominal Myomectomy? (part 2)
February 4, 2007 at 6:17 pm
Another new post here in the Forum:
Do you have a loved one dealing with uterine fibroid tumors?
February 6, 2007 at 1:57 pm
Great EG!! Thanks for the new posts. These topics, as you know, are of great interest to me right now!!!
Cheers,
Pam
February 6, 2007 at 5:22 pm
Hey Pam,
No problem. I look forward to the new discussions.
Cheers!
February 15, 2007 at 12:39 pm
can anyone recommend a good fibroid doctor in South Florida?
February 15, 2007 at 6:57 pm
Hi donna,
I added an announcement in this post that you were looking for a doctor:
How do I find a good local fibroid doctor?
I’ll also include the one on treatment options. It contains links to posts on this site where women are discussing recovery experiences. If you are interested in a specific procedure, you can talk to those women directly:
Just what are your uterine fibroid tumor treatment options?
If you have other questions, keep posting. Take care.
February 15, 2007 at 7:05 pm
Another new post here in the Forum:
Trying for pregnancy (ttc) after you fibroid procedure (Abdominal Myomectomy)?
February 20, 2007 at 1:17 pm
Five new posts here:
What should I carry with me to the hospital before my fibroid surgery?
Did you see Oprah trying acupuncture?
How are you using your fibroid voice?
The real issue with fibroids
And because EclecticGeek really does have a sense of humor…
Is your doctor McDreamy or Dr. Dreamy McGorgeous?
February 22, 2007 at 3:39 pm
Hi all,
Glad I found this blog!! Very informative, great info.
Well, I really will appreciate some light with my problem, please. I had my first healthy baby on January 2006 at the age of 41;-). In my first scam they discovered a fibroid (a good size one) I was told not to be bother about it unless it was painful, which was not at the time. On November 2006, after 10 months of giving birth, I started having lots of pain around my pelvis area. I never had such pain and became very concern.
Went to the doctor and suspected a water infection and gave me antibiotics, which help. After the course of treatment (two weeks) I felt ok and forgot all about it, but about a month ago all started again but with some other symptoms such as bloatiness, pain in mu lower back, pressure in my abdomen, and some pain in my left leg — where the fibroids were discovered.
Of course, I went to see the Doc again (now very concern) and suspected PID, and this time I took twoo more weeks of very strong antibiotics, which seems to work soon after I finished the treatment (about 10 days ago), but the pain is coming back!!!!!!!!!
I feel this sharp pain by the ovaries (the left one), and sometimes pressure all around that area. What worries most is the pain the left leg (not too intense and not all the time).
At first I was convinced it was a cyst and read all about, but when the Doc suspected PID then I became convinced. The problem is that the test for infection came back normal!!!!??? Not sign of infection whatsoever…so what’s going on here?
Please, i really will appreciate any thoughts or comments about my situation. Does any of you have experienced something similar? Can fibroids cause this problem?
I do have a appointment for a scam on the 5 of March….but before that I want to find out as much as possible.
thank you for your time and help.
Ruth
United kingdom
February 23, 2007 at 5:58 pm
Hi Ruth,
I had some similar symptoms which I believe were caused by the fibroid I had. I bloated so large that my abdomen from under my breasts to my pubic area would extend out like an inflated balloon. I often experienced a pain in my lower right pelvic side that would last for a week or so. I became so sensitive in that area that I would instinctively protect it from anything that could remotely come near me - especially my dog who likes to sit on my lap - and cringed even if she was *almost* touching the area. I also, especially the last few months before the surgery, experieinced intense lower back pains and constant pain down my right and sometimes both legs. RIGHT NOW, I have none of these symptoms going on. KEEPING IN MIND that it has been just a month since the fibroid was removed and so it hasn’t been long enough yet for me to fully say that all this was as a result of the fibroid alone. I, of course, hope they were and that life is now a much easier ride.
There is this great forum ["Uterine Fibroid Symptoms"] that provides more details. I’m glad you have that appointment with your dr. to check things out. The best to you!
[Edited by EclecticGeek to add link. Thanks Tina!]
February 24, 2007 at 11:36 am
Hey Eclectic Geek,
Thought you should know how helpful your site has been to me….. I check in 2 or 3 times a week and whenever I have any questions after my most current discussion with my Dr. (I told her about this site - she said she would check it out). I’m waiting for my focused ultrasound study to start, but have scheduled a Lap. Hyst. in June in case things havn’t moved forward on that front. Now takling the Lupron question, but already have migraines and issues with mood. My most current questions have to do with that and have already heard back from 2 people about their experiences….. You are doing a great joband I don’t really expect a personalized reply from you every time - just nice to have access to this community and the “people who have gone before me”! Thanks again.
February 25, 2007 at 3:53 pm
Ruth:
I’m glad you found us, too! Check the post that Tina suggested. It has a list of symptoms. What you are describing can be caused by your fibroid. I am also happy that you have an upcoming appointment with your doctor. Let us know if you have additional concerns. Take care.
Tina (1/24):
Thanks for your help!
malexmom:
Thanks for your kind words and the blog endorsement you made to your doctor.
Best wishes with everything!
February 25, 2007 at 4:09 pm
Two new posts here in the Forum:
What’s involved with pre-op testing before a fibroid procedure?
How are you preparing for your fibroid treatment?