Uterine fibroids...

kds10
kds10 Posts: 452 Member
edited December 2019 in Health and Weight Loss
Anyone have these...I had a routine ultrasound about a year ago and it showed that I have fibroids which at age 51 pretty common. Had another u/s couple of weeks ago and showed fibroids still of course. So my doctor wants to send me for an endometrial biopsy and it is like why...my sister had fibroids they went away when she was done menopause. I still get my periods somewhat regular at this point. I know at first my doctor thought I had stopped my periods and was just getting bleeding for no reason.

To me this is somewhat silly to go for this endometrial biopsy...fibroids are common at my age group and I am still getting my periods. Both the radiologist and my doctor thought I was done my periods and I had to remind them that no I am still getting it regularly. From what I was reading it is more of a concern if I had stopped my periods completely and then started to get bleeding, that is not the case.

What would you do? It is up to me to decide if I want to get this biopsy.

Replies

  • hansep0012
    hansep0012 Posts: 385 Member
    https://www.hystersisters.com/

    There is a free, amazing group called HysterSisters, which has solid information and support. With the information available from the site I was able to make informed decisions about how I wanted to address my fibroids and extreme anemia.
  • MikePTY
    MikePTY Posts: 3,814 Member
    I don't really have a good answer as I don't know the limit of what is considered normal vs. abnormal. My wife has PCOS and gets uterine fibroids, and has had surgery twice to remove them. Once 7 years ago she had one removed that was almost the size of a football. Last month she had a smaller one (5cm) removed along with a ovarian cyst that was irregular so they did a biopsy on it. The fibroids affected her quality of life and caused significant pain, so it made sense to get them removed.

    As far as your biopsy, I think no one can really decide that for you but you. How long is the recovery process? Will your insurance pay for it? I think if it will be a quick recovery and not a financial burden, it is probably better to be safe than sorry on that.
  • kshama2001
    kshama2001 Posts: 28,052 Member
    tracybear86 wrote: »
    I have not been diagnosed with fibroids but I did have an endometrial biopsy this year due to some other issues. If you decide to do this, take some pain reliever before you go and have someone go with you to drive you home. Pain is different for everyone but I think I have a pretty good pain tolerance (played competitive softball with a partially torn rotator cuff for 6 months). This procedure was incredibly painful for me. It felt like someone was dragging a knife around inside my uterus. And she had to do it 3 times. By the third time I was on the edge of passing out (cold, sweating, white as a sheet, tunnel vision). They had to get me some juice and let me lay down for a bit before I could sit up. Then I had to sit in the waiting room for a while because I had to drive myself home. Don't make plans after either because you will probably have some wicked cramps. It can be a useful diagnostic if your OB/GYN thinks there is something going on but be prepared that it may be painful. I would do it again if ever necessary but I would take some pain killer before and take someone to drive me home.

    Wow! I had none of this, but that's why I avoid elective surgery as much as possible, because stuff like this can happen.
  • kshama2001
    kshama2001 Posts: 28,052 Member
    edited December 2019
    BarbaraHelen2013 wrote: »
    I’m reading this with interest because my GP found that I had multiple fibroids when I was 51 (incidental diagnosis when I was visiting for a different issue) - had an ultrasound and blood tests to check for ovarian cancer markers (negative) but I was basically given no choice - booked in for a total abdominal hysterectomy within 2 weeks. My fibroids were the size of a 20 week pregnancy, but that doesn’t sound much more than many of you commenting here.

    In that two weeks I read up on fibroids and was surprised at the path I was on...it’s generally accepted that fibroids will shrink during menopause and at 51, although I had had no symptoms of menopause it had to be around the corner, surely?

    Anyway, I had the hysterectomy (including ovaries and cervix) and was given HRT (conjugated oestrogen) and quite honestly, it was the best thing ever! No more uncontrollable bleeding, crippling period pain and being housebound for 5 days every month.

    Glad it worked out so well for you!

    Probably they wanted you to have surgery because of that large size...I also have a 20 week pregnancy uterus and my GYN is rather bemused that I've declined a hysterectomy.

    Part of the reason I declined is because I was dreadfully unimpressed with a VA surgical GYN, who had recommended another procedure to me and was unaware of all its potential adverse effects: https://en.wikipedia.org/wiki/Uterine_artery_embolization#Adverse_effects

    My next GYN was aware of those adverse effects as she'd had patients come in with them post-procedure, and these women had not been warned that those adverse effects were possibilities >.<
  • tracybear86
    tracybear86 Posts: 163 Member
    kshama2001 wrote: »
    Wow! I had none of this, but that's why I avoid elective surgery as much as possible, because stuff like this can happen.

    I think if I had been even slightly prepared for it, it wouldn't have been so traumatizing. No mention at any point that it might be painful. I believe the phrase they used in the after care sheet was "slight discomfort may be possible". The Dr said afterwards that since I haven't had children my uterus might have reacted more strongly. Most of the forums I found online seemed to be split 50/50, either people had my experience or they didn't really have any pain at all. I would have rather known it was possible ahead of time and planned for the worst.
  • kshama2001
    kshama2001 Posts: 28,052 Member
    tracybear86 wrote: »
    kshama2001 wrote: »
    Wow! I had none of this, but that's why I avoid elective surgery as much as possible, because stuff like this can happen.

    I think if I had been even slightly prepared for it, it wouldn't have been so traumatizing. No mention at any point that it might be painful. I believe the phrase they used in the after care sheet was "slight discomfort may be possible". The Dr said afterwards that since I haven't had children my uterus might have reacted more strongly. Most of the forums I found online seemed to be split 50/50, either people had my experience or they didn't really have any pain at all. I would have rather known it was possible ahead of time and planned for the worst.

    Sure, you could have had a pain killer, a ride home, mental preparation >.<

    I had MOHS surgery last week and was super-prepared for distracting myself in the hospital, but it took so long we hit Boston rush hour traffic on the way home and were in the car for almost two hours. Wish I'd taken some pain killer at the hospital. (Pain didn't kick in until we were on the road.) My OH leaves ibuprofen in his car - I might start doing that.
  • cosmichvoyager
    cosmichvoyager Posts: 237 Member
    I also wonder if a CT scan or MRI might be advisable? Ultrasound is not the most precise imaging and seems to miss things.
  • tauntonmom
    tauntonmom Posts: 139 Member
    edited December 2019
    Not enough warning for those pics @missjck2 ! I would suggest using the spoiler
    hide the stuff people might not want to be surprised with
    next time!
  • youngmomtaz
    youngmomtaz Posts: 1,075 Member
    edited December 2019
    Cool! But I am weird like that! Loved gross anatomy labs, etc.

    I have had fibroids for 15+ years. Heavy bleeding was most of my issue. When measured with a menstrual cup it was over 750mls/cycle. I think a “heavy” period is classified as 80mls or more. My cycles were regular, my pregnancy’s were normal, and I had only moderate cramping the first 12-18hrs of the first day of my cycle. I have been fighting bottomed out iron and ferritin levels for years! So tired, poor exercise recovery, balding, and the associated low thyroid levels to boot(ferritin and thyroid go hand in hand).

    I had a uterine resection in March. The doc is suspicious of my initial ultrasound results. They showed fibroids the size of a 2-3momth pregnancy. What he removed was more the size of a 4-5minth pregnancy. My bleeding has reduced. It is about 200-250mls/cycle now. I have continued to take tranexamic acid to further reduce that. My cramps have basically stopped. I get maybe 2-3hrs of mild pain now. The resection was super easy. Epidural during the procedure, was prescribed 3 pain meds for the following week. I only took one dose then switched to Advil for about 3 days, used a heating pad when I was relaxing to relieve the mild cramping. Was back to work in 3 days and before that had been doing normal hobby farm stuff, we were lambing at the time so checking animals every 3hrs, some water and hay feeding, out and about checking my chickens, etc. I was tired out very easily and scheduled daily naps for about a month. But around that I was functioning normally. I started back to lifting heavy after 10days.

    I never had a biopsy, we just went straight to resection and they tested the material after that. I had been wanting a hysterectomy, but Canadian health care dictates I try a “less invasive” procedure first. I refuse to get an iud, so this was my next best option. I like the outcome potential better than some other options given I am only 38yo. Hopefully this is all I will need until menopause.

    My iron levels have raised drastically with every second day supplementation, some newer studies find that hepcidin levels were interfering with daily supplementation but dosing every other allowed more absorption, and my daily diet has not changed but does include red meat and other good iron sources. My thyroid levels are also super easy to balance now and I am feeling more human that I have in years! My gyn wrote scathing letters to all my providers locally. He claims I should have been given alternating iron infusions/whole blood transfusions at least every second month.

    Anyway, there is my experience. Maybe it will help op with decision making. Hugs to you, it all sucks the life out of you for sure!!

  • kshama2001
    kshama2001 Posts: 28,052 Member
    youngmomtaz wrote: »
    Cool! But I am weird like that! Loved gross anatomy labs, etc.

    I have had fibroids for 15+ years. Heavy bleeding was most of my issue. When measured with a menstrual cup it was over 750mls/cycle. I think a “heavy” period is classified as 80mls or more. My cycles were regular, my pregnancy’s were normal, and I had only moderate cramping the first 12-18hrs of the first day of my cycle. I have been fighting bottomed out iron and ferritin levels for years! So tired, poor exercise recovery, balding, and the associated low thyroid levels to boot(ferritin and thyroid go hand in hand).

    I had a uterine resection in March. The doc is suspicious of my initial ultrasound results. They showed fibroids the size of a 2-3momth pregnancy. What he removed was more the size of a 4-5minth pregnancy. My bleeding has reduced. It is about 200-250mls/cycle now. I have continued to take tranexamic acid to further reduce that. My cramps have basically stopped. I get maybe 2-3hrs of mild pain now. The resection was super easy. Epidural during the procedure, was prescribed 3 pain meds for the following week. I only took one dose then switched to Advil for about 3 days, used a heating pad when I was relaxing to relieve the mild cramping. Was back to work in 3 days and before that had been doing normal hobby farm stuff, we were lambing at the time so checking animals every 3hrs, some water and hay feeding, out and about checking my chickens, etc. I was tired out very easily and scheduled daily naps for about a month. But around that I was functioning normally. I started back to lifting heavy after 10days.

    I never had a biopsy, we just went straight to resection and they tested the material after that. I had been wanting a hysterectomy, but Canadian health care dictates I try a “less invasive” procedure first. I refuse to get an iud, so this was my next best option. I like the outcome potential better than some other options given I am only 38yo. Hopefully this is all I will need until menopause.

    My iron levels have raised drastically with every second day supplementation, some newer studies find that hepcidin levels were interfering with daily supplementation but dosing every other allowed more absorption, and my daily diet has not changed but does include red meat and other good iron sources. My thyroid levels are also super easy to balance now and I am feeling more human that I have in years! My gyn wrote scathing letters to all my providers locally. He claims I should have been given alternating iron infusions/whole blood transfusions at least every second month.

    Anyway, there is my experience. Maybe it will help op with decision making. Hugs to you, it all sucks the life out of you for sure!!

    I also found it useful to measure my flow with a menstrual cup so I could quantify my blood loss for my doctors. I'm with the VA, and tranexemic acid was not in their formulary for reducing bleeding, so it was a process to get it approved. "I lost 1500 ml last time " is a lot more meaningful than "really heavy."

    My nights were really rough before the tranexemic acid - I'd be woken up every hour or two. Now I get 4-5 hours. But after that I can only get another two hours - probably because the dose wore off and I've just taken another one.)

    For about 5 days I focus intensely on high iron foods - every meal has lentils, liverwurst, or red meat and snacks are dark chocolate.

    Additionally, I get 258 % of the RDA every day from my supplements, and another 20% per day from blackstrap molasses (This is not the same as the Grandma's molasses I use for baking - it is less sweet and I do not use it for cooking.)

    Iron counts in blackstrap molasses brands vary wildly - I use https://smile.amazon.com/Wholesome-Sweeteners-Organic-Molasses-Pack/dp/B001M0G2PO/

    Warning - this brand can leak, especially in the summer, so I do not order it with items that will be ruined if it leaks. The 3 pack is shrink wrapped together, which can help, but it did leak on me once in the summer, so now I stock up before it gets hot.)
  • kshama2001
    kshama2001 Posts: 28,052 Member
    cosmichvoyager wrote: »
    I also wonder if a CT scan or MRI might be advisable? Ultrasound is not the most precise imaging and seems to miss things.

    Once my fibroids got to a certain size we had to stop with the ultrasound and switch to MRI.

    I also wasn't willing to have 32 oz of water sloshing around my bladder for an hour before the US. Less room in my bladder with the fibroids sitting on it.
  • missjck2
    missjck2 Posts: 146 Member
    tauntonmom wrote: »
    Not enough warning for those pics @missjck2 ! I would suggest using the spoiler
    hide the stuff people might not want to be surprised with
    next time!


    My apologies tauntonmom and anyone else who may have been offended by the pic - that clearly wasn’t my intent.
  • youngmomtaz
    youngmomtaz Posts: 1,075 Member
    edited December 2019
    kshama2001 wrote: »
    youngmomtaz wrote: »
    Cool! But I am weird like that! Loved gross anatomy labs, etc.

    I have had fibroids for 15+ years. Heavy bleeding was most of my issue. When measured with a menstrual cup it was over 750mls/cycle. I think a “heavy” period is classified as 80mls or more. My cycles were regular, my pregnancy’s were normal, and I had only moderate cramping the first 12-18hrs of the first day of my cycle. I have been fighting bottomed out iron and ferritin levels for years! So tired, poor exercise recovery, balding, and the associated low thyroid levels to boot(ferritin and thyroid go hand in hand).

    I had a uterine resection in March. The doc is suspicious of my initial ultrasound results. They showed fibroids the size of a 2-3momth pregnancy. What he removed was more the size of a 4-5minth pregnancy. My bleeding has reduced. It is about 200-250mls/cycle now. I have continued to take tranexamic acid to further reduce that. My cramps have basically stopped. I get maybe 2-3hrs of mild pain now. The resection was super easy. Epidural during the procedure, was prescribed 3 pain meds for the following week. I only took one dose then switched to Advil for about 3 days, used a heating pad when I was relaxing to relieve the mild cramping. Was back to work in 3 days and before that had been doing normal hobby farm stuff, we were lambing at the time so checking animals every 3hrs, some water and hay feeding, out and about checking my chickens, etc. I was tired out very easily and scheduled daily naps for about a month. But around that I was functioning normally. I started back to lifting heavy after 10days.

    I never had a biopsy, we just went straight to resection and they tested the material after that. I had been wanting a hysterectomy, but Canadian health care dictates I try a “less invasive” procedure first. I refuse to get an iud, so this was my next best option. I like the outcome potential better than some other options given I am only 38yo. Hopefully this is all I will need until menopause.

    My iron levels have raised drastically with every second day supplementation, some newer studies find that hepcidin levels were interfering with daily supplementation but dosing every other allowed more absorption, and my daily diet has not changed but does include red meat and other good iron sources. My thyroid levels are also super easy to balance now and I am feeling more human that I have in years! My gyn wrote scathing letters to all my providers locally. He claims I should have been given alternating iron infusions/whole blood transfusions at least every second month.

    Anyway, there is my experience. Maybe it will help op with decision making. Hugs to you, it all sucks the life out of you for sure!!

    I also found it useful to measure my flow with a menstrual cup so I could quantify my blood loss for my doctors. I'm with the VA, and tranexemic acid was not in their formulary for reducing bleeding, so it was a process to get it approved. "I lost 1500 ml last time " is a lot more meaningful than "really heavy."

    My nights were really rough before the tranexemic acid - I'd be woken up every hour or two. Now I get 4-5 hours. But after that I can only get another two hours - probably because the dose wore off and I've just taken another one.)

    For about 5 days I focus intensely on high iron foods - every meal has lentils, liverwurst, or red meat and snacks are dark chocolate.

    Additionally, I get 258 % of the RDA every day from my supplements, and another 20% per day from blackstrap molasses (This is not the same as the Grandma's molasses I use for baking - it is less sweet and I do not use it for cooking.)

    Iron counts in blackstrap molasses brands vary wildly - I use https://smile.amazon.com/Wholesome-Sweeteners-Organic-Molasses-Pack/dp/B001M0G2PO/

    Warning - this brand can leak, especially in the summer, so I do not order it with items that will be ruined if it leaks. The 3 pack is shrink wrapped together, which can help, but it did leak on me once in the summer, so now I stock up before it gets hot.)

    Thankyou! I will put that brand on my list. I am actually looking at cutting back my tablet supplementation(already down to once every 4days) and just keeping up the good food sources as my iron is above the median and my ferritin went from a 2 to a 130, which is awesome for a woman.
  • jenferbar
    jenferbar Posts: 57 Member
    Hope you are okay.

    48 (weeks from 49) yo. Last GYN visit with new dr did a scan and found fibroids...at least 3 of note, in and one hanging off of the uterus on a stalk (which he said was fairly large.) Asked if I had any heavy bleeding or pain...nope. So just waiting to see what happens from here. Expecting another scan when I go in a few months.
    Still have my cycle...some months lighter than others, but the pre symptoms are the same (sore/painful breasts, acne, salt cravings, and new in the last year, constipation. Ugh.) My Mom went through menopause in her mid 40s, so I expected it to happen already. Also have PCOS (with cystic ovaries), if that is relevant.
  • lesdarts180
    lesdarts180 Posts: 3,071 Member
    Hi, I found this thread a few days ago and I'm interested to know how people got on after a hysterectomy. I'm having mine in January.
    My story is a bit different to most of the above. I'm 69 years old and only found out about my fibroids a couple of months ago although I've had them at least 10 years and probably more than 20 years. About 18 months ago I developed a prolapse that impacted on my activities quite seriously. My GP wanted to pursue "non - invasive" solutions first so I was referred first to a physiotherapist - who just gave me slightly different pelvic floor exercises to do, which were useless. Then the GP decided to try a pessary to support the prolapse. That was slightly more successful but I really wanted a hysterectomy. Eventually, about 12 months since first seeing a doctor, I was discussing the possibility of surgery when I mentioned a very small blood spot. That galvanised her into action and I was referred to a gynae-oncology clinic, where I had ultrasound, MRI, CT etc. That's when the consultant told me about the massive fibroids. Co-incidentally, I had an MRI scan 10 years ago at the same hospital (for arthritis in the hips) and the oncology consultant was able to compare the two scans which showed the fibroids were there 10 years ago. He also said that they very rarely grow after the menopause so I've probably had them at least 20 years.
    They caused no problems until a couple of years ago when they probably helped to cause the prolapse.
    I've also got a large cyst on one of my ovaries so the whole lot is coming out in January. By the way there was no evidence of cancer and given that the uterus has been in this state for at least 10 years without much change I'm not worried about cancer.

    Sorry about the long story, what I really want to know is how long did it take you to recover from a hysterectomy?

    Perhaps I should start a new thread?
  • lesdarts180
    lesdarts180 Posts: 3,071 Member
    @BarbaraHelen2013 and @BrownSugar174 , thankyou for your responses. I'm looking forward to improved quality of life, including improved bladder function and being able to be more active walking and other exercise.
  • mom23mangos
    mom23mangos Posts: 3,069 Member
    edited December 2019
    tracybear86 wrote: »
    I have not been diagnosed with fibroids but I did have an endometrial biopsy this year due to some other issues. If you decide to do this, take some pain reliever before you go and have someone go with you to drive you home. Pain is different for everyone but I think I have a pretty good pain tolerance (played competitive softball with a partially torn rotator cuff for 6 months). This procedure was incredibly painful for me. It felt like someone was dragging a knife around inside my uterus. And she had to do it 3 times. By the third time I was on the edge of passing out (cold, sweating, white as a sheet, tunnel vision). They had to get me some juice and let me lay down for a bit before I could sit up. Then I had to sit in the waiting room for a while because I had to drive myself home. Don't make plans after either because you will probably have some wicked cramps. It can be a useful diagnostic if your OB/GYN thinks there is something going on but be prepared that it may be painful. I would do it again if ever necessary but I would take some pain killer before and take someone to drive me home.

    Thank you so much for this. I’ve been following this thread because I just had an US looking for fibroids. They didn’t find any, but found instead Adenomyosis and an enlarged and thickened uterus. So biopsy is scheduled for 1/6. Because of your post, I know to be prepared with pain killer before the procedure as well as hot packs and to have my husband drive.

    I hope everything ended up ok for you after the biopsy.

    Oh, in addition I got a follow up on my mammogram as well. Ah, the joys of aging. 🙄
  • DanyellMcGinnis
    DanyellMcGinnis Posts: 315 Member
    Diagnosed with fibroids at age 39, one was 15-16 cm, the other was small, opted for a hysterectomy about a week after I turned 40. (I had no specific symptoms at all, this was discovered on my first routine physical in years. In retrospect, some of my acid reflux, constipation, inability to empty bladder completely, etc. may have been caused by this mass in my abdomen.)

    Still have ovaries (am only 42 now) but cervix, fallopian tubes, and uterus are gone. I have had no issues whatsoever but I was quite fit at the time of my surgery. I did gain back about 15 pounds of the weight I had lost after joining this site from wanting to eat like before without being able to do much exercise.

    Looking back on my diary, I started treadmill walking 3 weeks out (slow pace), chair yoga (kundalini sets for upper body only) about 6 weeks out, light weights about 7 weeks out (we're talking 2-5 pounds), kickboxing for short periods of time about 2 months later, kettlebells (probably just 10 pounds) maybe 10 weeks later, and modified Focus T25 about 3 months later. I always took it much slower than I thought I was ready for and that served me well.

    I was told by the gynecologist that fibroids are not typically biopsied because the tissue in them varies so much by location, and also because only 1 in 400 are cancerous. (They did send mine to histology at the hospital before they sewed me up.) Unless, of course, some other issue is suspected.

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