Are you following the “Watchful Waiting” fibroid treatment option?

Many women are following this fibroid treatment option so I decided to set up a separate thread for discussion. From the MayoClinic.com Uterine Fibroids Decision Guide:

Watchful Waiting

Your doctor will look for signs of rapid fibroid growth or interference with nearby structures such as your bladder or intestines.

Report to your doctor any new signs and symptoms that could signal problems, including heavy menstrual bleeding, back or pelvic pain, urinary frequency or constipation.


Here’s an excerpt of a comment from a visitor using this treatment plan:

Pam: Thanks for the info on Cyklopropan. I don’t see any red flags about it. I haven’t had a period since Nov. 19—am so excited. Hey, if I only get one a few times a year and the prescription works, I’ll be very happy to continue my watchful waiting!

If you are watching and waiting or have questions about this option, please leave a comment.

——————–

Related Posts:
Just what are your uterine fibroid tumor treatment options?
Uterine fibroid symptoms (not my idea of fun)

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51 Responses to “Are you following the “Watchful Waiting” fibroid treatment option?”

  1. EclecticGeek Says:

    Pam has been prescribed Cyklokapron to control heavy bleeding while watching and waiting. Click here to view her comment.

    I found some info:

    Wikipedia entry for Cyklokapron (Tranexamic Acid)
    General information about the drug’s antifibrinolytic properties. It works by inhibiting the degradation of fibrin (protein involved in forming blood clots). I guess you could call it the opposite of a blood thinner.

    Tranexamic Acid Drug Information
    More specific info about using the drug (dosage, possible side effects, etc.).

    Tranexamic Acid: A Review of its Use in the Management of Menorrhagia.
    Abstract (you knew this was coming) of a paper on Cyklokapron. This is a review article so it looked at a number of studies. From the abstract:

    In a number of small clinical studies in women with idiopathic menorrhagia, tranexamic acid 2-4.5 g/day for 4-7 days reduced menstrual blood loss by 34-59% over 2-3 cycles, significantly more so than placebo…

    In a large noncomparative, nonblind, quality-of-life study, 81% of women were satisfied with tranexamic acid 3-6 g/day for 3-4 days/cycle for three cycles, and 94% judged their menstrual blood loss to be ‘decreased’ or ’strongly decreased’ compared with untreated menstruations.

    It’s great that Cyklokapron is non-hormonal and works in a way that gives you the flexibility to take it as needed.

  2. Pam Says:

    Just wanted to give you an update. I still haven’t had a period (since November 19th, hurray!) so haven’t been able to try the Cyklokapron yet. I saw my family doctor yesterday and she thinks I might be going into the change. I really hope so, because then my “watchful waiting” would make complete sense!!! I’m 48, so there’s a good possibility my cycles are changing.

    I am, however, on Micronor (progesterine -only birth control pill), so that could be affecting my periods as well. My doctor warned that my next period, when it comes, could be a doozy!!! Well, then, I’ll take the Cyklokapron and cross my fingers.

    In my experience so far, the “watchful waiting” is okay. The only real problem my “grapefruit-sized” fibroid is giving me is the heavy bleeding, but my gyno says even that might not be the fibroid. It could be hormonal. Sometimes I do get lower back pain, but a visit to my chiropractor fixes that very well. My pant-size has gone up one size, which really isn’t too bad. I am not anemic from the heavy bleeding, which is a blessing. My fibroid is inside my uterus and doesn’t seem to be affecting any other organs. So for me, my particular case, the “watchful waiting” is okay for now.

    Thanks again, EG, for an opportunity to discuss our journeys. I’ll keep you all posted as things progress. It would be great if things don’t change, ie., I don’t get another period!!! We can always wish for miracles, right? I’m hoping someone else “watching and waiting” posts here, so we can compare notes.

    Cheers,
    Pam

  3. EclecticGeek Says:

    Hey Pam,

    Thanks for the update. I know I waited years before seeking treatment but it wasn’t “watchful” at all. By monitoring yourself, working with your doctor, and being prepared for possible problems along the way, you’ve given us a good example of waiting and watching.

    Best wishes with everything!

  4. Pam Says:

    Hi EG,

    Thanks for the encouragement. As of today, still no period. I am so happy! I’ll report back if/and/or when something changes.

    Take good care everyone!

    Pam

  5. EclecticGeek Says:

    Pam,

    Sorry I didn’t have a chance to get back here sooner.

    I hope all is well with you. Best wishes! 🙂

  6. Pam Says:

    Hi EG,

    Not to worry, things are fine (knock on wood). Just last week I had a very light period with very little cramping. I don’t know what’s going on, but I am certainly NOT complaining!! Seems like no one else is doing the “Watchful Waiting” thing—-I’m the only one who has visited this page. The “heavy bleeding” page is quite popular though!

    Hope you’re well. Is everything running smoothly with you?

    Cheers,
    Pam

  7. Sheila Says:

    This website is great. Who would know better about these procedures than the women who have experienced them and we are ALL different.

    I have a 6 x 8 cm fibroid and no real symptoms (except needing to go to the bathroom a little more often). My periods are normal and start every 28th day.
    I visited an IR on Wed to discuss embolization.

    His nurse is also my age (42) and she said that if she were in my shoes, she would do NOTHING until I start having problems, IF I ever start having problems.
    The IR basically told me the same thing. He said I was a good candidate for the procedure, but he didn’t really think a person should put her body through something like that if I was currently feeling good and was healthy. I do have occasional hip pain, but it could be arthritis, which runs on both sides of my family.

    The IR also told me with the embolization and ANY of the other procedures, there is a risk of ovary failure due to disruption of the blood supply to the ovaries.
    That is as risk that is just not worth it to me at this point. IF I ever start having some of the awful symptoms experienced by some of the women here, I will revaluate that decision. I advise any woman to READ AND STUDY and look at all options.

    So, I’m back to watchful waiting.
    I plan to try all the holistic stuff including body detox, natural progestin cream, etc. I’ve read mixed reviews on it on this website. I’m willing to try anything to save my uterus and not experience an early menopause.

    • Reg Says:

      Sheila, I was wondering if you ever had to have a hysterectomy. I have a fibroid like the one you described and was wondering how long I should wait. I am not having any problems. thanks. Reg

  8. EclecticGeek Says:

    Pam:
    I am fine. My fibroids and uterus are a lot smaller 6 months post-UFE. The procedure improved my bleeding symptoms almost immediately and several months later, I still feel great. Now, I’m just busy with the blog and living. I have my life back.

    Thanks for asking. 🙂

    Sheila:
    It all boils down to risk vs. benefit when deciding on any treatment option. I made my medical decisions based on the benefit of symptom relief outweighing any risk from the procedures.

    Just like you said, we are all different. I hope to hear from more women who are following the “Watchful Waiting” treatment option. Thanks for walking us through your decision-making process.

    Best wishes! 🙂

  9. fifi Says:

    Sheila, I also waited before deciding to have any fibroids removed. As a matter of fact the second opinion I got from a gyno suggested not to do anything until I did have problems.
    Periods like clockwork, and only once in a blue moon doubled over with pain for me, but one of them did finally get pretty big. I still have some left inside so I am now watching too. 49 years of age and 50 in may, so we will see.

    EG I think I am starting to spend as much time on this site as you do working on it. Does that mean I am now a geek too??

  10. EclecticGeek Says:

    Hey fifi,

    Yes, you are officially a geek! 😎

    Thanks for your continued visits and comments. I see you all over this site and it is much appreciated.

  11. El Says:

    I was diagnosed two years ago and the doc recommended watchful waiting which seemed to make sense but on the other hand sometimes I wonder if I should have gotten rid of it earlier while it was smaller since it has grown quite large…..

  12. Janet Says:

    I just had my 3 fibroids removed laparoscopically by Dr. Ascher-Walsh at Mt. Sinai, with the assistance of a robot . And looking back, I say watch the watchful waiting because the size of the fibroids could limit your treatment options if you want a minimally invasive solution. I was lucky…my biggest was the size of a cantaloupe ….and I did not think I would be a candidate for the procedure I had given the size of it but thanks to good old Dr. AW, I am fibroid free!! I checked into UE too…but given the size, the result would not have been the best…..

  13. El Says:

    I totally agree that when you consider watch and wait option, you have to take into account that your options might be limited if they get too big…. but then again if you are still fairly young there is a good chance they might grow back. Humbug!
    In retrospect I prob will have opt to get it done earlier.

  14. Pam Says:

    Hi EG,

    Haven’t checked in with you for so long. Just wanted to let you know that the watchful waiting is still working for me. I had a heavy period a little while ago, but other than that, the Micronor seems to be working well. My period was heavy but nothing too drastic. My doctor says if I can hold on until menopause, my fibroid will start shrinking and I won’t need surgery. Keeping my fingers and toes crossed!!! Hope you’re all having a great summer.
    Pam

  15. Jackie Says:

    I thought you could use this information: I’m 54, had my last period 5 years ago and had no menopause symptoms (really!) BUT my fibroids haven’t gotten any smaller (like I was told they would), and lately are causing more discomfort. My obgyn suggested I considerhaving a laparoscopic RF ablation procedure. First I’m waiting to see a new ultrasound in 2 weeks to compare to last year’s.

  16. MaryS Says:

    Today I saw a gyn for the first time in 7 yrs (I know, my bad). This was following pain episod about 1 month ago and ER did an ultrasound that found six fibroids, largest 5 cm (doc says a bit smaller than a tenis ball). Pain epsiode resolve and feeling ok now. Normal periods every 25 days.

    So gyn did pap, scheduled 1st mamo and – recommended hysterecotmy. Wow! She said I could “watch and wait” but that she could do a partial hysterectomy now (laproscopically through two abdominal incisions) and that option will go away if fibrioids grow larger than 12 cm.

    So – for people familar w/ “watchful waiting” – can you help w/ following Q or offer any other advice. (My first time here so let me know if I should post this elsewhere. Great site BTW!)

    1. In “watch and wait” – especially with no baseline for the past 7 yrs! – how often to you see a doc to get checked? Do you just have exam, or an ultrasound too?

    2. Are you concerned about fibroids being possibly cancerous. I’ve read it’s not common – but could happen in “large” fibroids. But then they don’t defing “large”!!

    3. I’m concerned about side effects of a hysterectomy (the sex issue, bladder problems, ealy menopause (I’m 44)). My doc seemed nice and very professional – but Wow – suggesting a hysterecotmy in the next 2 months following my FIRST visit to her office. Does she know somthing (like something bad) that she’s not telling me?

    Thanks for any advice or support.

    MaryS

  17. Michelle Says:

    Mary- I have a friend who is 50 and she’s on “watch and wait” mode. Her only symptom is very heavy bleeding. I think the mindset with her and her doctor is that she’s menopausal and things should be getting better as her hormonal levels get lower. Her doctor sees her every 6 months for an ultrasound.
    I have another friend who had a hysterectomy in her late 30’s. In her early 30’s she had an abdominal myomectomy to preserve her uterus. Then she got pregnant and new fibroids were growing during her pregnancy and causing problems. She ended up having her baby 2 months early. She thought about having another AM so she could try to have another child but decided to forego that and have a hysterectomy. She feels great and has a normal sex life.
    I was on “wait and see” when I was diagnosed with fibroids… 5 cm and 2mm. My periods were getting crazy so when I went in for my annual, they checked on them. They had grown so much…they were pushing on my bladder and I looked like I was 4 months prego. I had an AM to preserve my uterus seeing I am 38.

  18. Carol Says:

    I am 52 and have been watching and waiting for 1 year now. I have a fibroid about the size of a tennis ball that is pressing on the bottom of the bladder. I do not have pain or heavy bleeding but have urinary retention if my bladder gets too full (several times a month – I self catheterize). I have an ultrasound & see my Urogynecologist every six months. The first doctor I saw said that I should have a hysterectomy but I am really hoping that the fibroid will shrink when I get to menopause and my new doctor is supportive. The only study I could find re. diet and fibroids suggested that red meat and ham could be a problem so I eat almost no red meat or ham now and am eating mostly organic food. I wonder about pesticides and chemicals that may mimic or block estrogen. The fibroid has not gotten any bigger in the last year – hard to know if the diet has helped or not. At 52 hopefully menopause and relief will come soon! Anyone else with a similar symptoms?

  19. geoz Says:

    Hi MaryS and everyone,

    Surgery should be a last resort, never a first option.

    Use watchful waiting to pro-actively take steps to reduce your fibroids. Please, please please… don’t just wait, there are things that you can actively do that can have a dramatic effect on fibroids, reducing or dissolving them away without surgery or drugs or expensive supplements.

    People have completely dissolved their fibroids. There is a true personal account at fibroidsinfo.com that I recommend you at least read to see if the approach resonates with you.

    I hope this may help –

  20. jackie Says:

    I would like to know if anyone has had relief of lower back discomfort after removal of their fibroids?

    I have several fibroids, the largest 4cm posterior (which seems small after reading these posts). My uterus is enlarged to 9x8x7 cm. I am 54 and haven’t had a period in 5 years, so bleeding is not a problem. Only symptoms are lower back discomfort and waking up to urinate and a slightly protruding tummy. I scheduled a thermal ablation on Jan. 18 because my doctor said the procedure relieved backache in another patient, though she also said there is no guarantee (can’t tell if fibroids are pressing on nerve or not until they get in there).

    I am now having serious reservations and thinking of cancelling since my symptoms are not so bad and I am quite scared of surgery.

    • Amy Says:

      Jackie, just noticed your old post and don’t know if you are still monitoring this site, but I’m in exactly the position you once were…. what did you end up doing?

  21. Mocha Says:

    Jackie: No advice to give, just wishing you the best of luck in whatever you choose.

  22. Penny Says:

    Jackie:

    No advice to offer other than doing a bit of research before having the procedure. I wish I would have done more research before my NovaSure ablation. That said, it does seem the thermal ballon type of ablation might work. Here’s an article from ’03 I came across…

    http://findarticles.com/p/articles/mi_m0CYD/is_12_38/ai_104259037

    Good luck and good health to you in your decision. Thanks for sharing your experience since everyone under the sun has promised my fibroids will shrink one I hit menopause. Looks like that’s not ALWAYS true, huh.

    I’m 49 and currently on the watchful waiting plan. I go back this summer for another ultrasound and if they’ve grown I’m going to move onto another plan – either Lupron to possibly hurry along menopause or the UFE. Below is my story, if you’re interested.

    I had the NovaSure endometrial ablation 2 years ago for heavy bleeding. My doctor didn’t do any imaging (ultrasound, etc). Made the comment of just trying this first before wasting $$ on images (what-the-heck, whose $$?).

    Anyway, the first year was a bugger. Didn’t really help much with the bleeding, my periods just became more irregular as far as timing. Had to carry supplies with me all of the time since I never knew when I’d start.

    Went to my PCP this fall with complaints of on and off low backache and hip pain, bloating, full feeling pelvis and bladder. None was constant and not really cyclical since I no longer had a cycle.

    That’s when I found I had 3 fibroids. She ordered an ultrasound and then an MRI when the ultrasound should something blocking the view of an ovary. Turned out to just be one of “the gang”, but she wanted to be sure.

    I went back to the GYN that did the ablation. He said they were probably the reason the procedure didn’t take. This is the guy who offered up the procedure without any images, who now admits his notes stated that my uterus was/is irregular and enlarge, couldn’t tell much more because it’s tipped and I’m a fairly big girl (50 lbs overweight).

  23. jackie Says:

    Thanks Penny. It helps to share stories. It made me remember, when I used to have bad periods, or have them twice a month and also used to have supplies always at the ready, my obgyn put me on birth control and that regulated them and made me more comfortable.

    Here’s a link to an article about the procedure my doctor is talking about.
    http://www.reepl.ru/_user_files/UterinRita.pdf

    I have the same symptoms you describe “on and off low backache and hip pain” (for me it’s on the right back, just like my fibroid, which makes me think it could be pressing on a nerve or my spine) “bloating, full feeling and bladder” (2 days ago after drinking a lot of water I had to get up 6 times during the night). Also, I am so tired of my stomach sticking out (I am otherwise average weight).

    I scheduled the procedure for mid-Jan then after about a month cancelled it because 1) I was losing sleep thinking about surgery, 2) was reading these blogs and mine are small by comparison, 3) don’t want to get pregnant, and 4) maybe the backache is caused by something else.

    Now I’m trying to do stretching/yoga for my back religiously to see if it helps, and lose a few pounds to see if my full feeling and protruding abdomen improves. But waking up today with a low ache between my spine and hip really is depressing. But getting this blog in my email helps. Thanks again.

  24. Penny Says:

    Jackie,
    That looks like an interesting procedure that I may have to add to my list of possible alternatives.

    I’d been on BC for 20-some years due to menstrual issues. Was taken off of them 6 years ago when my GYN retired and the “new guy” took over. I was 43 and still smoking – rules are rules. Once off the BC pills all those menstrual issues came back (just as the doctors promised).

    I finally quit smoking last spring and went to my PCP with complaints of not being able to loose weight after 3 months of instensive diet and exercise, she poo-poohed that complaint but wanted to hear more about my “female” troubles. That’s how I ended up with the ultrasound and MRI that found the little buggers. I’d have probably just kept plodding along thinking this is what getting old and being off the pill was all about since my GYN wasn’t too helpful on follow ups after my ablation. He just kept saying give it time. Amazing what you’ll accept as normal when it comes on gradually like that.

    Anyway, I’m no doctor but your uterus doesn’t sound all that large according to this link: http://www.nuff.org/health_theuterus.htm
    It says:
    “A “normal” uterus is typically the size and shape of an upside down pear and weighs somewhere around 6 ounces. Its dimensional size is about eight to ten centimeters by six centimeters (roughly 3-4 inches by 2 ½ inches). ”

    So I guess I’d be with you on wondering if the back pain and all might be caused by something else. Have you had a second opinion? Sounds like your doc might be fixated on the fact that you have fibroids and not looking any further. Not sure if this is your PCP or GYN making the recommendation but I’d get another opinion on it. Sometimes they can’t see the forest for the trees.

    For what it’s worth, I do the exercise/yoga thingie and it helps with my back pain quite a bit. Building the strength of the core muscles helps support the low back. My hip pain was helped quite a bit by bicycling and later walking.

    I’ve also been doing some vitamins/supplements and nattokinase which really seemed to help with the bloating and clotting. Too soon to tell, but my last 2 periods were almost cyclical since starting the nattokinase (23 days and 35 days). I used to ache all over in my joints with the back and hip being the absolute worse.

    I also just started acupuncture last week. Wonderfully relaxing…too soon to tell if it’s working. Could end up that none of what I’m doing will make any difference with regards to the fibroids, but I’m getting healthier none the less.

  25. Penny Says:

    Jackie,

    Wondering how you’re doing with the stretching/yoga for your backaches and how you’re doing with the watching. (Seems there are not a lot of watchful-waiters out here.)

    Do you remember back when you stopped having periods, did they just stop or did they start getting further apart and lighter? I know everyone experiences it differently, but I’m curious.

    My cycles have been all over the place since my ablation, usually much shorter than 28 days (like 10-14) until this past summer when I quit smoking and started exercising and eating healthy, then they started getting longer – 28, 52, 28, 35 and now 42 and counting.

    I’m hoping I’m getting close to menopause. I haven’t had a lot of the other symptoms either aside from a bit of “head noise” and a couple of night sweats in the past year.

    Oh, and I am lovin’ the acupuncture! Aches and pains are almost completely gone and I just feel “different”.

  26. MacKenzie Says:

    I have elected to “watchful wait,” for my heavy bleeding from fibroids due to having no medical benefits at this time. So that rules out ablations, embolization, the $10,000 MRI procedure, hysterectomy, etc.

    Have not seen a gyn since 2006. Had endometrial biopsy done then- was negative. Also had pelvic ultrasounds. Fibroids not much bigger than in 2004. Have had very large fibroids since 2004. Tried the nattokinase Fibroid pills for about 4-5 months. Gave up. Did not see improvement.

    The severe back and some abdominal pain that lasted for three days for the past two years or so is totally gone now! My husband died in summer of 2007. I lost about 30 pounds. Stomach a bit smaller because my whole diet changed without my husband. I no longer eat a lot of junk food, like cakes, donuts, candy, pretzels, potato chips, ice cream, large quanities of meat and bread, salad dressings, fast food.

    Still eat a little ice cream and a little fast food, a little chocolate, but I also think no longer eating a lot of dairy has helped my stomach reduce. I used to drink vast quantities of skim milk and I was forever bloated.

    PMS syptoms were horrendous and in different parts of menstrual cycle in last few years. Since taking calcium and magnesium, notice not as many mood swings/anger. Also the back and abdominal pain totally went away! I’m not sure why.

    The only thing is – the heavy insane bleeding has gotten EVEN WORSE the last two periods! I’ll be 50 next week. I was taking a lot of ibuprofen for the prior pain about 3-4 days of my cycle – not that there’s no pain and I’m not taking ibuprofen – is that why no more bleeding? OR just more bleeding because I am rounding the bend to menopause and the hormones are acting up?

    My hemoglobin was a 7 the last few years. I’m taking regular 325 mg. iron 3X daily (I do skip a lot – not a good pill taker.) Had blood work done March 2008 – hemo. up to a 9.

    The bleeding is so insane right now. Wearing diapers, pads, and two tampons at times. Concerned about toxic shock syndrome, having a heart attack from blood loss, etc. Am ejecting tampons spontaneously, more flooding, etc.

    IF money were no problem, I would try ablation, especially thermal type, the MRI thing – frying those fibroids I guess, but not a hysterectomy or embolization which the latter, I’ve read is iffy for some or many.

    I’m hoping to get a job with medical benefits but it is doubtful at this time with what kind of companies/work I am doing now, and the bad economy,etc.

    So the only thing I can think of is trying:
    *Cyklokapron – I just heard about this. Can I be on this for the next two to three years when I should be in menopause?

    *Will next look up norethisterone –
    *Breast cancer in family – mother/sister died from, grandmother too I think, though she was 80-something. My Mom was 50 years-old and sister 56. So I guess birth control pills are out to control bleeding? Anyone know? Even low-dose estrogen kind, etc.?

    *Would not want to go on Lupron after reading all the horrors and lawsuits.

    THANKS FOR ANY HELP!

  27. salsera Says:

    Hi Mackenzie,

    I had terrible bleeding which landed me in the ER several times. Cyclokapron works (or did for me), it slowed the bleeding by maybe half but when ur bleeding at the rate that I was half just isn’t enough! I was on cyclokapron for about 3 weeks. when I went to the ER for my bleeding they gave me cyclokapron by iv.

    As for lupron its not a solution, lupron will stop bleeding and shrink the tumors but as soon as you come off they grow right back and the bleeding comes back. Lupron is only used in special cases, for me it was used to stop the bleeding before my surgery and it was the only thing that worked.

    I would not use lupron uless I was using it to tide me over until a real treatment could be done because as soon as you stop you are right where you started!

    salsera

  28. Aja Says:

    Hi MacKenzie,

    I tried to get cyklokapron down in the states and had difficulties finding a doctor to prescribe it off label. So Annoying because it is a first line of defense over in the UK. (Supposedly it is approved by the FDA for teeth cleanings on hemophiliacs but not fibroids.) Anyway, if you can find someone to prescribe it, I think that would be a good way for you to go because it sounds like you are bleeding entirely too much. This is not to discourage you, but to suggest that you bring in printouts of studies and such so that you can be prepared in case you have to persuade your doctor. Best of luck!

  29. MacKenzie Says:

    Thanks Salsera and Aja,

    I will attempt to get cyklokapron and try it.

    I’m JUST NOW getting tired of all the bleeding. I put up with it these past three years because it was only heavy for three days and the peiods lasted a total of about 10-12 days. This past year it’s been as many as 17 days of total bleeding with FOUR TO FIVE days of heavy bleeding. Not all day or night of course. It’ll gush really heavy every three or four hours or so. And the three days at the end and beginning are very light or moderate.

    I did notice that I MISSED a period twice this year. I hope that’s indicative of menopause coming soon.

    Ok, See you. Thanks.

  30. Melissa Giannas Says:

    Hi Just that third ultrasound in 3 years. Fibroids basically the same size, 5.6cm and 2.3 located in the back of the uterus (fundal and posterior) Doctor recommends partial hysterectomy and of course I turned 50 colors at the mention of the “H” word. I am 49 and am beginning to have major menopausal symptoms but still get my period. I missed a couple of months over the last year and thought I would die. I was blown up like a baloon, constipated and absolutely miserable. I gained 10 pounds since last year and I feel that it all went to my belly and thighs!!! I eat pretty well and take lots of vitamins. My blood work is normal but I am looking into the MRI procedure. My doctor scared me on the embolization procedure and told me horror stories on the possible side effects or “mistakes” that could happen. Of course she is a surgeon and not a radiologist who does embolization. She just wants to make money and do the partial laproscopic hysterectomy now because she said you never know if the fibroids will get too big to perform a laproscopic surgery. Anyhow, I will continue to watch and wait and try some holistic approaches. Anybody have any success with natural remedies? I am so glad to find other women my age in the same situation. I feel sooo much better.

  31. Aja Says:

    Hi Melissa,

    Y’know, I have no objection to people getting hysterectomies if that is what they want to do and choose to do – but I do wish that the doctors were a little more sensitive to the fact that some of us do not wish to undergo major surgery unless absolutely necessary.

    Anyway, there is a whole thread here on MRIgFUS where you can read about other women’s experiences with it – including mine. I am grateful I did it and wish that I had done it sooner – but I’m only 42 and I was clearly going to tap out my lifeblood before menopause hit! Good luck with the decisions ahead and I hope you find the best solution for you:
    http://blog.geekwithfibroids.com/2006/09/24/does-anyone-have-an-experience-with-exablate-mrgfus/

  32. Melissa Says:

    Hi everyone! I was wondering if anyone gets horrible gas because of their fibroids. I guess because my little darlings are located on the “fundus” and “posterior” part of the uterus they are laying on my bladder and my bowel. Lovely!! I constantly feel bloated. Well I’m going on a diet and am hoping maybe the fibroids will starve with no fat!

  33. Jas Says:

    I’m 52 and have large multiple fibroids. ObGyn told me to get off the pill and see if I go into menopause after a few months. My periods for the past 2 years have been heavy for 2 of the days, but periods now last 8 days. Uterous is size of 5 mth pregnancy. I find that after I eat and sit too long, I have to run to the washroom and throw up .. never food, just liquids. Go figure. If periods remain very heavy, I have to go for a D&C and be fitted for a Merina IUD. Last choice is bikini cut hysterectomy. Oh joy. He told me it takes a long time for fibroids to shrink after menopause and in some cases they don’t shrink or just a little bit. I’m getting sick and tired of these fibroids and having to deal with aging as well. Sure sucks.

  34. rose Says:

    I haven’t been on here for awhile, but I would recommend that all you who are approaching menopause look into UFE, we are perfect candidates for this procedure.

    You don’t have just the option of hysterectomy, even though that’s what most OBGYN’s will push on you. It is unfortunate that is often the only choice given, when there are less intrusive options.

    Google “Interventional Radiology” and you will find out more. There is an entire website (the Society of Interventional Radiologists) with list of doctors. I called around and found one close by who specializes in this procedure and he told me I was a perfect candidate. He also gave me his time for free in a consultation- answering questions, stating risks (which are way lower than a Hysterectomy!)

    My GYN never mentioned any other alternative, I had to go searching.

    I’m 51, have a large fibroid, Cantelopue sized uterus. Since the average age of Menopause has risen to atound 55, this could buy some time for some of us who have already had years of bleeding and don’t want major surgery.

    Take care!
    Rose

  35. Amy Says:

    Jas, I just turned 53, have 3 fibroids and was bleeding horribly – but I’m very happy with the D&C and hysteroscopic endometrial ablation my doc performed two years ago. I am still going to look into a lap myomectomy because I don’t like the size of my stomach and I have some back pain that I think might be caused by the fibroids. So I agree with Rose, there are definitely different options. Good luck!

  36. Jas Says:

    Thank you Rose and Amy for your response. I have made an appt. with another Gyno for January to get a 2nd opinion. This guy apparently doesn’t push hysterectomies unless it’s the only choice left.

  37. Gale Says:

    Don’t watch and wait and let your uterine fibroids grow too big! I think this is very important for all women to know. Back in 1995 I was first diagnosed with fibroids during an ultrasound, however they exhibited no symptoms so I left them alone. For years this strategy worked well and even my Ob/Gyn suggested that if I could make it to menopause without symptoms my fibroids would shrink naturally on their own due to diminishing estrogen.

    In the meantime I tried every natural remedy I learned about to stop them from growing. I tried acupuncture, Chinese herbs, meditation, and eating a healthy organic diet without animal hormones. But nothing worked.

    Over a 14-year time frame, until 2009, the fibroids kept growing until I finally started showing major symptoms at 53 years old – when I thought I was just about to hit menopause. One morning I woke up to find my bladder was blocked by one of the fibroids and I couldn’t urinate. I also looked in the mirror around this same time to notice that I was becoming skin and bones because one of the fibroids had crowded out my stomach, making it hard to eat and digest food. (And I was thin to begin with.)

    Sure, I knew these fibroids were growing, and it even felt like I was laying on rocks when I was on my stomach – but I thought as long as they didn’t cause me pain or excessive bleeding I could handle it. That was until I woke up and couldn’t urinate! At this point I had no choice but take action.

    I went to three specialists and all of them said I needed to have an abdominal hysterectomy right away. The doctor I chose to perform the surgery told me I was actually backed into a corner: I couldn’t go on as I was because the fibroids were increasingly endangering my health, but he warned me that the surgery would be difficult because of the size and growth of the fibroids. And there was something else all three doctors told me, which I hadn’t heard before –large, rapidly growing fibroids have a small chance of being cancerous sarcomas. I also learned that fibroids don’t necessary shrink that much at menopause, so even if I had made it to that magic age, I would still be stuck with very large masses decaying in my uterus.

    Armed with this information I knew I absolutely had to have major surgery now, so I took a deep breath and got on with it. Not only did I end up having a total abdominal hysterectomy, but due to the scope and difficulty of the surgery, I had complications involving my ureter which required a second, and even larger surgery two weeks later to fix. All told, this was the most traumatic thing I’ve ever lived through. I spent about two weeks in the hospital, lost an additional 20 pounds, and am just now – two and a half months later, feeling strong enough to make dinner.

    Looking back, if I knew then what I know now, I would have done things very differently. I would NOT have waited until my fibroids grew so huge that I had no choice as to possible treatment methods. Had I looked into treatment earlier, I could have selected from many other options now available which are much less invasive. So please – do not wait until you are backed into a corner like I was. If your fibroids are growing larger and larger, take action before it is too late and you may have no choice but to undergo an abdominal hysterectomy.

  38. Amy Says:

    Gale, thanks so much for sharing your experience and hope you continue to feel a lot better. I completely agree with you and sorry you had to find out the hard way! I’m 54 now, still haven’t gotten around to doing anything about mine (although I tried, but the doc I went to said I was too old!) So now I have to find someone who will remove them without taking everything else out too, fortunately, they aren’t growing, but they aren’t shrinking either. But all in all, you are right, and watchful waiting is for the birds. Thanks.

  39. Gale Says:

    Hi Amy, that’s very good news that your fibroids are no longer growing. The part about them not shrinking though – that is something I didn’t know about prior to surgery myself. I had read in multiple places that the fibroids will shrink away at menopause…. but this is not necessarily true, as you have said and I found out from my MD.

    So this is another reason that watching and waiting might not be the wisest choice if the fibroids are growing. A woman can end up with large fibroids that won’t go away.

    In terms of being told you are too old to do anything about it at 54 – that surprises me! (As my 83 year old mom would say, “54 is still a baby!”) However if your fibroids aren’t giving you any trouble, it’s probably better not to risk the surgery… especially if you would need to have an abdominal surgery, which is a very difficult path.

  40. NR Says:

    Hi All

    I have just had a laparoscopy and a small walnut sized fibroid was found at the top of my uterus and a fibroid bigger than my uterus was found on the back wall.

    I was told this fibroid was 4cm – however it looks larger than my uterus in the pictures. How large is a uterus – could I have heard wrong and it be 4inches?

    I am 28 and havent had children but would like to. The gyno said we should keep an eye on it to see if it grows cos I have a 1 in 100 chance of losing my uterus with a mymomectomy. Is this true? It seems so many of you women have had it – were you told the risk was 1% or less?

    I am scared to wait as I dont want to find in a year it has grown and is harder to remove and then im at higher risk of losing my uterus. Also – I dont know if i should have it removed if im not ready ttc just yet in case more come back in the meanwhile.

    I am so confused as to the size of it – it is as big as my uterus if not bigger – can this really mean its only 4cm or im I likely to have heard wrong. He told me after the laparocopy so I wasnt 100% when he was telling me.

    Please tell me what you have heard and been advised as Im so scared to leave it and find it gets bigger and my chances to concieve later are reduced.

    Thanks!

  41. Kanchi Says:

    I have DVT and multiple fibroids. My largest fibroid is 9 cms and another large one is 5 cms. My doctor has strictly told No to hysterectomy for the next 6 months at least. My question is anyone out there who has been in a similar situation? And what are the alternative healing options out there available for me. I am currently wearing the stocking and having anticoagulants for the DVT.

    • Kanchi Says:

      hello,

      Isnt there anyone who has DVT and fibroids? I just had a another Doppler done and the clots have reduced. But they feel I should have a hysterectomy done, as the largest fibroid (9 cms) might be resting on the vein. Is this the my only option? Or can I wait and watch as I am likely to hit menopause soon (I am almost 48). Anyone who has similar experiences?..

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