Fibroid Tumors

2

Replies

  • musicfan68
    musicfan68 Posts: 1,122 Member
    evileen99 wrote: »
    I had a fibroid the size of a soccer ball; I had all the problems others here mention and more. It was too big for embolization. The hysterectomy was the best thing that ever happened to me. And mine was done laparascopically--a big tumor doesn't necessarily mean open surgery.

    Mine was done laproscopically also, and I was out of the hospital 2 days later - would have been 1 day except I also had my gall bladder out at the same time. Surgery isn't always as bad and scary as it's made out to be.
  • dsboohead
    dsboohead Posts: 1,900 Member
    musicfan68 wrote: »
    evileen99 wrote: »
    I had a fibroid the size of a soccer ball; I had all the problems others here mention and more. It was too big for embolization. The hysterectomy was the best thing that ever happened to me. And mine was done laparascopically--a big tumor doesn't necessarily mean open surgery.

    Mine was done laproscopically also, and I was out of the hospital 2 days later - would have been 1 day except I also had my gall bladder out at the same time. Surgery isn't always as bad and scary as it's made out to be.

    So very true! I was sick of going to emergency room to be cathetized cause of the inability to urinate.
    You know...at times fear of complications need to be set aside to take care of a task at hand!
    Hopefully that fibroid shrinks so as to not pinch off other functioning organs but fear is not an option vs the obvious solution.
    Crossing the street is a risk but I still cross the street. ;)
  • fr33sia12
    fr33sia12 Posts: 1,258 Member
    musicfan68 wrote: »
    evileen99 wrote: »
    I had a fibroid the size of a soccer ball; I had all the problems others here mention and more. It was too big for embolization. The hysterectomy was the best thing that ever happened to me. And mine was done laparascopically--a big tumor doesn't necessarily mean open surgery.

    Mine was done laproscopically also, and I was out of the hospital 2 days later - would have been 1 day except I also had my gall bladder out at the same time. Surgery isn't always as bad and scary as it's made out to be.

    When you have health anxiety as I do, the thought of having to stay in hospital, having an actual operation, infection, blood clots, something going wrong, living on my own after the operation would cause me so much panic I wouldn't be able to do it unless it was life threatening and there was no choice.
    I had my appendicitis out after it burst and was in hospital for 2 week because of infection, so things can and do go wrong with what should be a simple operation. It's not always just about having a simple operation, for me a simple operation doesn't exist.
  • dsboohead
    dsboohead Posts: 1,900 Member
    fr33sia12 wrote: »
    musicfan68 wrote: »
    evileen99 wrote: »
    I had a fibroid the size of a soccer ball; I had all the problems others here mention and more. It was too big for embolization. The hysterectomy was the best thing that ever happened to me. And mine was done laparascopically--a big tumor doesn't necessarily mean open surgery.

    Mine was done laproscopically also, and I was out of the hospital 2 days later - would have been 1 day except I also had my gall bladder out at the same time. Surgery isn't always as bad and scary as it's made out to be.

    When you have health anxiety as I do, the thought of having to stay in hospital, having an actual operation, infection, blood clots, something going wrong, living on my own after the operation would cause me so much panic I wouldn't be able to do it unless it was life threatening and there was no choice.
    I had my appendicitis out after it burst and was in hospital for 2 week because of infection, so things can and do go wrong with what should be a simple operation. It's not always just about having a simple operation, for me a simple operation doesn't exist.

    Yes...there are complications to everything we do including operations but in some cases
    (Appendicitis) the alternative is do nothing which leads to death :/
  • musicfan68
    musicfan68 Posts: 1,122 Member
    fr33sia12 wrote: »
    musicfan68 wrote: »
    evileen99 wrote: »
    I had a fibroid the size of a soccer ball; I had all the problems others here mention and more. It was too big for embolization. The hysterectomy was the best thing that ever happened to me. And mine was done laparascopically--a big tumor doesn't necessarily mean open surgery.

    Mine was done laproscopically also, and I was out of the hospital 2 days later - would have been 1 day except I also had my gall bladder out at the same time. Surgery isn't always as bad and scary as it's made out to be.

    When you have health anxiety as I do, the thought of having to stay in hospital, having an actual operation, infection, blood clots, something going wrong, living on my own after the operation would cause me so much panic I wouldn't be able to do it unless it was life threatening and there was no choice.
    I had my appendicitis out after it burst and was in hospital for 2 week because of infection, so things can and do go wrong with what should be a simple operation. It's not always just about having a simple operation, for me a simple operation doesn't exist.

    Maybe you would benefit from therapy to deal with your anxiety. Blood clots and complications are actually pretty rare nowadays. I've had over 100 surgeries throughout my life for various things, some very serious. I have never gotten an infection or blood clots, or anything else from having surgery. With your appendix, it wasn't the surgery that caused the 2 week stay and infection, it was because you didn't have your appendix out early enough before it burst. Once it bursts, it causes massive infection. It is always better to deal with things before they get to a dangerous point like the appendix bursting. And sometimes it just can't be avoided.
  • dsboohead
    dsboohead Posts: 1,900 Member
    musicfan68 wrote: »
    fr33sia12 wrote: »
    musicfan68 wrote: »
    evileen99 wrote: »
    I had a fibroid the size of a soccer ball; I had all the problems others here mention and more. It was too big for embolization. The hysterectomy was the best thing that ever happened to me. And mine was done laparascopically--a big tumor doesn't necessarily mean open surgery.

    Mine was done laproscopically also, and I was out of the hospital 2 days later - would have been 1 day except I also had my gall bladder out at the same time. Surgery isn't always as bad and scary as it's made out to be.

    When you have health anxiety as I do, the thought of having to stay in hospital, having an actual operation, infection, blood clots, something going wrong, living on my own after the operation would cause me so much panic I wouldn't be able to do it unless it was life threatening and there was no choice.
    I had my appendicitis out after it burst and was in hospital for 2 week because of infection, so things can and do go wrong with what should be a simple operation. It's not always just about having a simple operation, for me a simple operation doesn't exist.

    Maybe you would benefit from therapy to deal with your anxiety. Blood clots and complications are actually pretty rare nowadays. I've had over 100 surgeries throughout my life for various things, some very serious. I have never gotten an infection or blood clots, or anything else from having surgery. With your appendix, it wasn't the surgery that caused the 2 week stay and infection, it was because you didn't have your appendix out early enough before it burst. Once it bursts, it causes massive infection. It is always better to deal with things before they get to a dangerous point like the appendix bursting. And sometimes it just can't be avoided.

    Again...irrational fear can freeze an individual which is not beneficial and in many cases make things far worse.
  • kshama2001
    kshama2001 Posts: 27,881 Member
    fr33sia12 wrote: »
    musicfan68 wrote: »
    evileen99 wrote: »
    I had a fibroid the size of a soccer ball; I had all the problems others here mention and more. It was too big for embolization. The hysterectomy was the best thing that ever happened to me. And mine was done laparascopically--a big tumor doesn't necessarily mean open surgery.

    Mine was done laproscopically also, and I was out of the hospital 2 days later - would have been 1 day except I also had my gall bladder out at the same time. Surgery isn't always as bad and scary as it's made out to be.

    When you have health anxiety as I do, the thought of having to stay in hospital, having an actual operation, infection, blood clots, something going wrong, living on my own after the operation would cause me so much panic I wouldn't be able to do it unless it was life threatening and there was no choice.
    I had my appendicitis out after it burst and was in hospital for 2 week because of infection, so things can and do go wrong with what should be a simple operation. It's not always just about having a simple operation, for me a simple operation doesn't exist.

    Your fears are valid.

    Some information on adverse effects of just hysterectomies:
    http://www.hersfoundation.com/facts.html
    http://www.hersfoundation.com/effects.html
  • steph268
    steph268 Posts: 24 Member
    I underwent a uterine artery embolization this past December, as I had a uterus the size of a 16 week pregnancy. There were many in there, and many were large, so they could not take my uterus out laparoscopically. The OBGYN suggested I look into this, and I was an ideal candidate. I could feel them when I put pressure on my belly or when I lied on my belly.

    The fibroids were wreaking havoc on my workouts every month. I was having horrible PMS, pains in my lower right-abdomen (found out it was my biggest fibroid sitting on my bladder, and I am still dealing with the pain six months later). When I would start, I would just suffer for 3 days. I was so tired and bleeding so much, I didn't want to do anything.

    The UAE post-procedure was the worst, as I had some intense pain I had to deal with, but six-months later, I'm doing great, my workouts are better than they have been in years, and I've lost 9 pounds with diet and exercise. All in all, nothing helped my fibroids except medical help.
  • fr33sia12
    fr33sia12 Posts: 1,258 Member
    edited June 2018
    musicfan68 wrote: »
    fr33sia12 wrote: »
    musicfan68 wrote: »
    evileen99 wrote: »
    I had a fibroid the size of a soccer ball; I had all the problems others here mention and more. It was too big for embolization. The hysterectomy was the best thing that ever happened to me. And mine was done laparascopically--a big tumor doesn't necessarily mean open surgery.

    Mine was done laproscopically also, and I was out of the hospital 2 days later - would have been 1 day except I also had my gall bladder out at the same time. Surgery isn't always as bad and scary as it's made out to be.

    When you have health anxiety as I do, the thought of having to stay in hospital, having an actual operation, infection, blood clots, something going wrong, living on my own after the operation would cause me so much panic I wouldn't be able to do it unless it was life threatening and there was no choice.
    I had my appendicitis out after it burst and was in hospital for 2 week because of infection, so things can and do go wrong with what should be a simple operation. It's not always just about having a simple operation, for me a simple operation doesn't exist.

    Maybe you would benefit from therapy to deal with your anxiety. Blood clots and complications are actually pretty rare nowadays. I've had over 100 surgeries throughout my life for various things, some very serious. I have never gotten an infection or blood clots, or anything else from having surgery. With your appendix, it wasn't the surgery that caused the 2 week stay and infection, it was because you didn't have your appendix out early enough before it burst. Once it bursts, it causes massive infection. It is always better to deal with things before they get to a dangerous point like the appendix bursting. And sometimes it just can't be avoided.

    I've had therapy for my anxiety and am doing much better, but still wouldn't put myself through surgery unless necessary. I've had bad periods all my adult life, so pain and heavy periods are normal to me and I'm used to it. I'd rather suffer like this once a month than suffer the extreme anxiety I would have before, during and after an operation and then deal with menopausal symptoms etc. Plus just because something is rare doesn't mean it won't happen. The chances of someone winning the lottery are very rare but people still play every week.
  • DanyellMcGinnis
    DanyellMcGinnis Posts: 315 Member
    You don't have to deal with menopause symptoms if you keep your ovaries. I kept mine and I've been fine. During the operation you can't have anxiety as you are not awake! After I was mostly just glad it was over.

    I also had no complications whatsoever. No clots (in the hospital they had these things they hooked up to my legs, it's hard to describe, they expanded and contracted to provide gentle pressure that did not prevent me sleeping, but they were for preventing clots). Pain was minimal and well-controlled. No infection, no nicking of other organs, etc.

    I gained a bit of weight afterwards mostly because during my recovery I wanted to continue to eat at pre-surgery levels despite not being able to exercise, but that is coming off now. Less than 6 months after the surgery I was capable of swinging a 20 pound kettlebell (heavy for me but I have tiny wrists) and doing a Focus T25 and an Insanity workout back to back. I am still a US size 2.

    Also, please be suspicious of anyone claiming fibroids can be controlled with diet. I had someone (a fellow fibroid sufferer, no less) tell me that eating a plant-based diet could make them shrink. Which is total BS as I have been a vegetarian with a high-fiber diet for 25 years and I still grew fibroids. In my case, I have a family history of fibroids and I was 39 when diagnosed, 40 for surgery, and had never had children (because I didn't want them, not for some other reason).

    Fibroids can continue to grow if left untreated and can get so big that they block the flow of urine from the kidneys to the bladder (this was the doctor's worry based on the placement and size of mine), can block the ability to urinate as described by someone else in this thread, etc. Mine also caused constipation and acid reflux, which can have problems down the road that need to be dealt with. Not addressing the problem means emergency surgery may eventually be required, despite patient anxiety. It is much better to plan and prepare, considering what recovery time can be (I was stuck at home for 7 weeks) than to end up having the same procedure on an emergency basis and have to deal with the consequences without adequate time to get ready, request time off work or arrange to work from home, take care of household or family responsibilities, etc.
  • jenilla1
    jenilla1 Posts: 11,118 Member
    steph268 wrote: »
    I underwent a uterine artery embolization this past December, as I had a uterus the size of a 16 week pregnancy. There were many in there, and many were large, so they could not take my uterus out laparoscopically. The OBGYN suggested I look into this, and I was an ideal candidate. I could feel them when I put pressure on my belly or when I lied on my belly.

    The fibroids were wreaking havoc on my workouts every month. I was having horrible PMS, pains in my lower right-abdomen (found out it was my biggest fibroid sitting on my bladder, and I am still dealing with the pain six months later). When I would start, I would just suffer for 3 days. I was so tired and bleeding so much, I didn't want to do anything.

    The UAE post-procedure was the worst, as I had some intense pain I had to deal with, but six-months later, I'm doing great, my workouts are better than they have been in years, and I've lost 9 pounds with diet and exercise. All in all, nothing helped my fibroids except medical help.

    @steph268 Mine is closer to 14 weeks. The fibroid I have seems to give me the most trouble the week before my period. I love to run long distance, but the pressure on my bladder makes it so I literally have to stop every 5 minutes to pee. The rest of the month I also have bladder pressure, but I can usually go a few miles without peeing. Really takes the enjoyment out of my run. I can't do my marathons anymore because who wants to wait in line for 30 minutes for the porta-potty every other mile? Talk about a nightmare! My sister and I did a relay run and I wrecked our time with my bathroom breaks. Sad. :s

    The doctor has suggested UAE, since it's just one giant fibroid so it's less likely to have a bunch of other ones popping up later. I've heard they keep you overnight to juice you up with drugs for the pain and nausea. I guess the body reacts negatively when you try to kill parts of it off. How long did it take to recover? I hate the idea of being inactive for very long...
  • fr33sia12
    fr33sia12 Posts: 1,258 Member
    You don't have to deal with menopause symptoms if you keep your ovaries. I kept mine and I've been fine. During the operation you can't have anxiety as you are not awake! After I was mostly just glad it was over

    I'm not worried about anxiety during the operation it's before and after. For me anxiety can be so crippling that I can't leave my home. How am I going to be able to stay overnight and basically be trapped in a hospital bed for days. I'm guessing you don't suffer from anxiety.
    I also had no complications whatsoever. No clots (in the hospital they had these things they hooked up to my legs, it's hard to describe, they expanded and contracted to provide gentle pressure that did not prevent me sleeping, but they were for preventing clots). Pain was minimal and well-controlled. No infection, no nicking of other organs, etc.

    Just because you had no complications doesn't mean I won't.
    Fibroids can continue to grow if left untreated and can get so big that they block the flow of urine from the kidneys to the bladder (this was the doctor's worry based on the placement and size of mine), can block the ability to urinate as described by someone else in this thread, etc. Mine also caused constipation and acid reflux, which can have problems down the road that need to be dealt with. Not addressing the problem means emergency surgery may eventually be required, despite patient anxiety. It is much better to plan and prepare, considering what recovery time can be (I was stuck at home for 7 weeks) than to end up having the same procedure on an emergency basis and have to deal with the consequences without adequate time to get ready, request time off work or arrange to work from home, take care of household or family responsibilities, etc.

    Many women have fibroids and don't even know it, which are left untreated. I've seen a doctor about my fibroids and discussed whether I might want them removing, I said not unless I have to, and the doctor was fine with that. There's no point having an operation just in case something may cause complications in the future.
  • kshama2001
    kshama2001 Posts: 27,881 Member
    This sounds strange but I have a friend that mixes one tbls blackstrap molasses with 1 tbls of raw ACV. She warms it kind of like a tea to make it tolerable. She drinks that twice a day and she has shrunk her fibroids significantly. Her OB has been following with ultrasounds so they were measuring. She had two and the were half the size at the 6 week mark of drinking that nastiness. If you google natural treatments for fibroids you can find quite a bit about this method.

    Ya, you mentioned this some time ago to me and I tried it for months. Did not help me :(

    I'm anemic and have been doing the blackstrap molasses tea for years as one of many ways to get more iron into me.
  • kshama2001
    kshama2001 Posts: 27,881 Member
    I've also had no luck with the flax seed, black cohosh, EFA, and DIM recommendations from http://doctormurray.com/health-conditions/uterine-fibroids/ and others.

    Stopped the DIM as it is expensive but still taking flax seed, black cohosh, and EFA as they have other benefits.

    Perhaps the black cohosh explains my utter lack of hot flashes despite being almost 52.
  • kshama2001
    kshama2001 Posts: 27,881 Member
    edited June 2018
    Anyone have luck with a low fat diet for fibroids? That's about the only natural approach I haven't tried.
  • jenilla1
    jenilla1 Posts: 11,118 Member
    kshama2001 wrote: »
    Anyone have luck with a low fat diet for fibroids? That's about the only natural approach I haven't tried.

    I was on a low fat diet for a few years for a separate digestive issue, and during that time my fibroid only grew larger. (It didn't get bigger because of the low fat diet, though. It was just doing it's thing. It kept growing the same after I stopped the low fat diet, too.)
  • steph268
    steph268 Posts: 24 Member
    jenilla1 wrote: »
    steph268 wrote: »
    I underwent a uterine artery embolization this past December, as I had a uterus the size of a 16 week pregnancy. There were many in there, and many were large, so they could not take my uterus out laparoscopically. The OBGYN suggested I look into this, and I was an ideal candidate. I could feel them when I put pressure on my belly or when I lied on my belly.

    The fibroids were wreaking havoc on my workouts every month. I was having horrible PMS, pains in my lower right-abdomen (found out it was my biggest fibroid sitting on my bladder, and I am still dealing with the pain six months later). When I would start, I would just suffer for 3 days. I was so tired and bleeding so much, I didn't want to do anything.

    The UAE post-procedure was the worst, as I had some intense pain I had to deal with, but six-months later, I'm doing great, my workouts are better than they have been in years, and I've lost 9 pounds with diet and exercise. All in all, nothing helped my fibroids except medical help.

    @steph268 Mine is closer to 14 weeks. The fibroid I have seems to give me the most trouble the week before my period. I love to run long distance, but the pressure on my bladder makes it so I literally have to stop every 5 minutes to pee. The rest of the month I also have bladder pressure, but I can usually go a few miles without peeing. Really takes the enjoyment out of my run. I can't do my marathons anymore because who wants to wait in line for 30 minutes for the porta-potty every other mile? Talk about a nightmare! My sister and I did a relay run and I wrecked our time with my bathroom breaks. Sad. :s

    The doctor has suggested UAE, since it's just one giant fibroid so it's less likely to have a bunch of other ones popping up later. I've heard they keep you overnight to juice you up with drugs for the pain and nausea. I guess the body reacts negatively when you try to kill parts of it off. How long did it take to recover? I hate the idea of being inactive for very long...

    So, it was an interesting recovery. you are sort of in this drug induced but conscious state during the whole procedure. Yes, they kept me in the hospital until about 9 am the next morning on a morphine pump that I could hit every 10 minutes. it was kind of crazy. I was so high by the time I got home and the next night when I started on the meds they gave me for home, I was hallucinating. But, it kept the pain at bay. I also run a lot, and when I was in the hospital they kept asking me if my HR is always that low.

    I stayed on the cocktail of meds for the first 5 days, and then I broke out in a rash. I thought it was the opioids, so I cut those out, and it turned out it was the anti-inflammatory. Anyway, I switched to ibuprofen, and I was feeling so good by the next Monday, I went for a run/walk. Bad idea. But, they tell you you need to always keep moving. Don't just get sedentary. So, I walked. I took two weeks off of work, and I don't think I needed it.

    When I finally felt ready to jog/walk again, about 3 weeks later, it seemed to wake up the anger in my fibroids again. I was doubled over in pain after two miles. It seemed to be the blood pumping in my body, and my fibroids wanted it, and they were super angry. It's a weird recovery. All in all, it was a really good decision I made. I still sometime to get some pain after running, but it's rare, and it's not to the point where I have to take any pain meds, but the exercise induced pain went on for awhile. I read as much as I could, so I could get an idea of recovery for people. I hope this helps. Especially since you are a runner. Everyone's recovery seems to be very different, but there is certainly a recovery that goes with it. If you have any other questions, let me know! I found people's stories very helpful.
  • kshama2001
    kshama2001 Posts: 27,881 Member
    edited June 2018
    jenilla1 wrote: »
    steph268 wrote: »
    I underwent a uterine artery embolization this past December, as I had a uterus the size of a 16 week pregnancy. There were many in there, and many were large, so they could not take my uterus out laparoscopically. The OBGYN suggested I look into this, and I was an ideal candidate. I could feel them when I put pressure on my belly or when I lied on my belly.

    The fibroids were wreaking havoc on my workouts every month. I was having horrible PMS, pains in my lower right-abdomen (found out it was my biggest fibroid sitting on my bladder, and I am still dealing with the pain six months later). When I would start, I would just suffer for 3 days. I was so tired and bleeding so much, I didn't want to do anything.

    The UAE post-procedure was the worst, as I had some intense pain I had to deal with, but six-months later, I'm doing great, my workouts are better than they have been in years, and I've lost 9 pounds with diet and exercise. All in all, nothing helped my fibroids except medical help.

    @steph268 Mine is closer to 14 weeks. The fibroid I have seems to give me the most trouble the week before my period. I love to run long distance, but the pressure on my bladder makes it so I literally have to stop every 5 minutes to pee. The rest of the month I also have bladder pressure, but I can usually go a few miles without peeing. Really takes the enjoyment out of my run. I can't do my marathons anymore because who wants to wait in line for 30 minutes for the porta-potty every other mile? Talk about a nightmare! My sister and I did a relay run and I wrecked our time with my bathroom breaks. Sad. :s

    The doctor has suggested UAE, since it's just one giant fibroid so it's less likely to have a bunch of other ones popping up later. I've heard they keep you overnight to juice you up with drugs for the pain and nausea. I guess the body reacts negatively when you try to kill parts of it off. How long did it take to recover? I hate the idea of being inactive for very long...

    @jenilla1 My previous GYN recommended UAE but the possible adverse effects I read about turned me off. Then my current GYN said she had patients who'd come in for those very adverse effects, specifically infected dying fibroids, and hadn't been warned by their surgical GYN they were a possibility >.<. UAE is not a procedure she recommends.

    I started on this Wikipedia page and read the articles in the footnotes as well.

    https://en.wikipedia.org/wiki/Uterine_artery_embolization#Adverse_effects

    Adverse effects

    The rate of serious adverse effects is comparable to that of myomectomy or hysterectomy. The advantage of somewhat faster recovery time is offset by a higher rate of minor complications and an increased likelihood of requiring surgical intervention within two to five years of the initial procedure.[7]

    Adverse effects that have been reported include the following:
    1. Death from embolism, or septicemia (the presence of pus-forming or other pathogenic organisms, or their toxins, in the blood or tissues) resulting in multiple organ failure[10]
    2. Infection from tissue death of fibroids, leading to endometritis (infection of the uterus) resulting in lengthy hospitalization for administration of intravenous antibiotics[11]
    3. Misembolization from microspheres or polyvinyl alcohol (PVA) particles flowing or drifting into organs or tissues where they were not intended to be, causing damage to other organs or other parts of the body[12]
    4. Ovarian damage resulting from embolic material migrating to the ovaries[citation needed]
    5. Loss of ovarian function, infertility,[13] and loss of orgasm[citation needed]
    6. Failure of embolization surgery – continued fibroid growth, regrowth within four months[citation needed]
    7. Menopause – iatrogenic, abnormal, cessation of menstruation and follicle stimulating hormones elevated to menopausal levels[14]
    8. Post-embolization syndrome (PES) – characterized by acute and/or chronic pain, temperatures of up to 38.8 °C or 101.8 °F, malaise, nausea, vomiting and severe night sweats; foul vaginal odor coming from infected, necrotic tissue which remains inside the uterus; hysterectomy due to infection, pain or failure of embolization[15]
    9. Severe, persistent pain, resulting in the need for morphine or synthetic narcotics[16]
    10. Hematoma, blood clot at the incision site; vaginal discharge containing pus and blood, bleeding from incision site, bleeding from vagina, fibroid expulsion (fibroids pushing out through the vagina), unsuccessful fibroid expulsion (fibroids trapped in the cervix causing infection and requiring surgical removal), life-threatening allergic reaction to the contrast material, and uterine adhesions[citation needed]
  • steph268
    steph268 Posts: 24 Member
    I had a stellar radiologist. You have to do your homework to make sure you get a provider skilled in this area. There are adverse effects for every invasive procedure you get.