My reservations about revealing personal medical issues have been outweighed by the fact that sharing my experience might help someone else in a similar situation. A little bit of knowledge might save someone else going through the kind of pain and disability that I found myself dealing with three years ago. That, and there is a symbolic component to this that is entirely in keeping with the topics I write about here.
Still, fair warning is called for. This is not one of my usual posts. If talk of surgery and other medical procedures disturbs you, you might want to stop reading here. However, if you have uterine fibroids, suspect that you do, or know someone who does, the following might save you or someone you love a considerable amount of difficulty. The usual disclaimers apply: This is my experience only and is in no way intended as medical advice, so please don’t use this as a substitute for competent, qualified medical treatment or consultation.
The last few years have been a long and difficult journey for many reasons, and particularly in regards to my health. I’ve mentioned before about being on light duty with the fire department – what I didn’t specify was why. It had nothing to do with firefighting. (The incident when my leg went through the floor of the burning mobile home happened several years before I started having numbness and pain in my legs.) In the summer of 2004, I found myself in the midst of a medical mystery. It took six months to figure out what was wrong.
It was a hot August day and I was on my way to Kingman to finish up my training with a new ambulance company when I started having symptoms. It was a long drive, over a hundred miles, and I was only two-thirds of the way there when I started feeling nauseous and having abdominal pain, lower right quadrant, and sharp pain radiating into my legs and lower back. Not good. I called in and turned around to head back to Flagstaff. My doctor worked me in and thus started months of tests, endless rounds of doctor appointments, and gradually worsening symptoms.
First, the physical exams, CAT scans, and sonograms. Appendicitis was ruled out; no hernia, no masses, nothing unusual was visible or palpable anywhere. But the pain continued to worsen, alternating between a dull ache and stabbing pains in my abdomen and groin that would radiate down my legs, sometimes all the way to my feet. By October, I was no closer to an answer. I was still keeping up with my coursework in my Fire Science degree program, and I even managed to get through my state fire investigation training, but I did it in pain and the knowledge that if things continued the way they were going, I was in deep trouble. Just sitting in class or down at the fire station doing paperwork was about all I could do, and driving and walking were getting increasingly difficult.
The doctors were evenly divided between, “We can’t find what is causing it, but we know there is something wrong. We’ll keep looking until we find it,” and “There isn’t anything we can find. Come back in [anywhere from one to three] months if you’re still having problems.”
Then, in November, I was walking down the hall at school and I almost fell. My right foot was dropping and I didn’t have control over it. My primary care physician ordered an MRI and told me that she wanted to rule out a tumor in my lower spine. The unspoken words hung in the room, “What if you don’t rule it out…”
Thankfully, the MRI came back negative. My doctor put me on an opiate for the pain and scheduled an exploratory laparoscopy for early December. The laparoscopy didn’t reveal much, but the surgeon did take care of some adhesions and said that I definitely had uterine fibroids (a fairly common type of benign tumor), but nothing that looked too bad. Lacking anything more to go on, my doctors got together and recommended that I have a hysterectomy for the fibroids, anyway.
Good thing! In January 2005, I had the hysterectomy. I was still groggy and in recovery when the surgeon came in and said that along with my uterus he had removed a fibroid the size of a tennis ball that had been growing in my cervix. When I saw my primary care physician, she exclaimed, “You were walking around giving birth for six months!” Yeah, giving birth to the Fibroid From Hell. I felt like an extra in an “Alien” movie.
Deliverance! Or so I thought. I felt better almost immediately. I was out of the hospital earlier than anticipated and recovered extremely quickly. There was just this lingering pain down my legs…
As it turns out, the femoral nerves had been compressed for months, wedged between the pelvic bone and the growing fibroid. That accounted for the pain. I have been dealing with the resulting nerve damage ever since. Physical therapy and medications helped, but it has been a long and difficult process, that only now is reaching resolution. I sincerely hope that this post helps someone else facing the same situation find an answer sooner than I did.
The symbolic thing out of all this? In nearly three years of dealing with the Fibroid from Hell and its aftermath, I’ve lost a lot – my uterus; my unthinking expectation of continued good health; an advancing career as an EMT, firefighter, and officer; my marriage. In exchange, I ended up giving birth to a renewed sense of self.
I’ve learned that I can persist despite pain and uncertainty, and that I can take care of myself emotionally under very difficult circumstances. I can let go of the illusion of invulnerability and physical robustness, all the while doggedly fighting to regain my health despite uncertain odds and outcome…all valuable lessons to take with me into the second half of life.
Natural Cures For Uterine Fibroids
Uterine fibroids are benign tumors that are made up of the muscle and connective tissue from the wall of the uterus. Other terms for fibroids are myoma and leiomyoma. While benign in terms of cancer, fibroids can cause heavy bleeding, pain, and even ca…
Ariel,
thank you for your posting – it was helpful.
I have had pain in my feet for a couple of years but didn’t go to the doctor until last week (bad thing) She said I had neuropathy in my feet and she gave me some medicine call Lyrica (I love it – the pain went away and I have so much energy)
I also did some research that suggested I see a neurologist.
I have scheduled an appt. with a neurologist and plan to let him know of my fibroid tumor which I believe could have something to do with the neuropathy in my feet.
I wish you the best with your legs and health. I will pray for you.
Blessings,
Kris
Hi Kris –
Best of luck on your journey. Glad to hear of your success with the Lyrica and that my post was helpful to you. I appreciate the prayers.
At this point, the pain in my legs and feet is gone most of the time, only flares up when I overdo the heavy lifting, and I’m just about ready to start lifting weights again in an attempt to see how far I can press the envelope there! It’s been three years now since the symptoms first started.
Good luck with the neurologist and I’ll keep you in my prayers, as well. Thanks for commenting
Ariel
Ariel, I hope you keep in touch. I have had various difficulties walking for about three years. I have had a fibroid tumor for about 17 years that I have checked once to twice per year ever since. It never caused any abdominal pain, but reportedly it is the size of a five month old fetus.
With regard to my walking problems, I have seen orthopedics, neurosurgeons, neurologists. They have had me had numerous MRIs, myelograms, CTs, EMGs. MS, demylination disorders, ALS, and other neurodegenerative diseases have or still are being ruled out. Some Drs asked me if I could live with the condition, while others acted as if I was making things up. This has been an emotional roller coaster.
Recently I told my gynecologist that my stomach seemed to be growing. According to her, the ultrasound showed no changes in fibroid size. She had me have a CT scan that showed a 6 or more inch by 6 inch mass that hits the left pelvic wall. I asked her vs. vice versa, if mass could be pinching a nerve causes the walking difficulties in my left leg. My right leg works okay. She said that was a possibility. I will have a hysterectomy after someone confirms that I don’t have a muscle atrophy disease such as ALS (lLou Gehrig’s). Hopefully, I don’t have cancer.
Since I came up with the hypothesis (a few days ago) that the fibroid is causing the leg problem, not a car accident or a family history of Parkinson, or a neurodegenerative disease, I have met 2 woman whose legs were paralyzed during pregnancy and another who didn’t have to walk with a cane after fibroid was removed. And now your story.
Thanks for the validation of my hypothesis. Are you walking completely normal now? Any other suggestions? WJK
Hi Wendy,
Thanks for stopping by and commenting. I hope you find relief from your symptoms soon, whatever their root cause.
I am walking normally, though once in a while I get pain or catch myself shuffling or my foot will drop. It’s mainly when I get really tired or irritate the nerve, like I did this last week with pushing my exercise program a little too far, too fast. I’m gradually building back up and don’t yet know how far I will be able to go.
My biggest suggestion is “Don’t wait.” If it is nerve compression, that won’t get better on it’s own. I wish I had made more noise early on. (See my post of Don’t Just DO Something)
Find a doctor who will advocate for you and get you in to see a specialist and will keep after them if necessary. I was too patient and too willing to suffer through the pain, trusting that the specialist knew best. Pain means something and is your body trying to get your attention! Listen.
Good luck!
Ariel
Thank you for the quick response. I read your other post Don’t Just DO Something and admit having similar feelings. I have been reading books entitled “How Drs Think” and “Ultra-Prevention” . These support my experience with how drs. handle patients and difficult to diagnose symptoms. I plan on having something done within the month. I wish you a full recovery. Wendy
Thank you, Wendy, and best of luck to you, as well.
The good news on my surgery was that, despite the surgery itself, I started feeling better almost immediately. Fibroids seemed to drain my energy in lots of ways other than the pain and the nerve compression. These days, I’m feeling better than I have in years. My energy and outlook have improved tremendously! The nerve damage is frustrating, but manageable, and I hope that someday even that won’t be an issue any more.
I hope you feel better soon.
Ariel
[…] that make things easier and the long-term improvements continue, as well. (Related posts: “The Fibroid From Hell” and “From a Flabby Forty-Nine to a Fit […]
Ariel,
Thank you so much for sharing your story. My fibroid is also from hell. Although it’s only about 4.5 cm now, I believe it’s pressing on nerves, particularly affecting my sciatic. I am currently on medical disability since my job requires me to drive long hours and driving is nearly impossible. I once went to the gym six days a week, lifted weights, took spin classes, and had tons of energy. Now, sitting upright is a chore and even when lying down in bed, I get the stabbing and gnawing right and left lower quadrant pains along with lower back agony and pressure and pinpricks down my right leg. I had a vaginal hysterectomy scheduled for December 21, but my insurance felt I hadn’t tried less invasive procedures first, so I’m being injected now with hormones and pulled on and off various types of hormone therapy before having surgery. My entire life has been disrupted–affecting my career, my personal relationships, and my self-esteem. Most days I can’t even get out of bed. Completing simple household tasks is impossible, and with laundry and dishes piling up and my son longing for a homecooked meal, I’m wondering how much more I can take before I beg my doctor to simply do more. Pain pills don’t even touch the tip of this pain. I feel as if most believe my pain is all in my head, that a little growth in my uterus can’t be causing this much physical and emotional upheaval. Your posting affirmed my pain and my quest to get help. Thank you.
Hi Tali –
I can certainly sympathize with what you are going through! I got much the same response from one doctor and I strongly encourage you to get a second (or third, or…) opinion and not delay surgery if nerves are being compressed.
As I learned, compression can eventually lead to damage, possibly irreversible, and once those pain pathways are activated it can be quite difficult to get the nerves back to their original state. I took opiates for several months while doctors debated what to do about my symptoms.
Less invasive treatment is obviously the most desirable, but when there is potential nerve damage and the cascading “life damage” effect that you and I have both experienced, it makes sense to find a doctor who will work with you to carefully weigh the benefits and consequences of all the various treatment options. I wish you a speedy resolution, and a complete and rapid recovery! Good luck, and please comment again to let me and my readers know how you do.
Ariel
Comment from Louise made on Dec 20, 7:09 AM
Moved from “About” page
Dear Ariel
I stumbled across your post about fibroids. I’ve just had a myomectomy to take out my firboids eight days ago. I’ve been through two years of hell from heavy bleeding to golf ball sized clots and flooding. I was 28 when it started. I’m so sorry that your doctors couldn’t work out what was wrong with you sooner. I can totally identify with the leg pains. I used to get a hip pain just by sitting down doing nothing. It was horrible. Surprisingly I had a scan done in May 2006 that was incorrect and thus took the doctors an additional four months to find out that my uterus was full of blood. This was my fourth operation to deal with the pain and adhesions and blood building up inside me. I’m hoping its my last and that I can now get on with my life.
I’m sorry that you’ve gone through the hell but I just wanted to say well done for writing about it and sharing it with others. I think it’s important to get information out there because some of my doctors have been useless.
With best wishes
Louise
——
Ariel’s Reply:
Thanks for commenting, Louise. “The Fibroid From Hell” is consistently my most viewed post, which means that there are a lot of us out there… I am very glad I wrote it and, at the same time, dismayed that so many women have experienced so much pain and suffering. Information is power.
Best of luck on your recovery and on rebuilding your life!
Dec 20, 9:37 AM
I had three fibroids moved in July 2007. Prior to the fibroid removal i was suffering from fatigue, heavy bleeding, and back and right leg pain. I considered myself to be physically fit and after a long run I experienced tingling sensations in my thigh radiating to my feet. It got gradually worse and was eventually dragging my right leg around. The right leg pain always seemed to get worse during my period. When I was diagnosed with fibroids it was suggested that they might have caused pain i was experiencing from my sciatic nerve and the running might have exacerbated the condition. I have been relatively pain free since the removal of the fibriods but the pain has started up again three weeks ago and it seems to get worse around the time of my period. I am still physically active but not as much as I used to be. Any suggestions as to what I can do?
Hi Tracy –
Sorry to hear of the apparent recurrence of your symptoms. You don’t say if the removal of your fibroids included a hysterectomy, but my understanding is that, if not, it is possible for fibroids to recur. If I was experiencing the kind of problems you are having, my first order of business would be to visit my doctor. It definitely sounds like the province of a qualified medical professional.
Ariel
Hi Ariel,
I was so grateful to read your story. I’ve been in sporadic pain since early December and at first I attributed it to a muscle pull, kidney stone….whatever…I was all over the place. It seemed the more active I was, the worse the pain became. Conversely, there was almost no pain at all first thing in the morning. But between the hip pain, pain during exercise, after sex and anytime I sat/stood/sat/stood a lot, I figured I was dying.
I had already planned to ask my ob/gyn about ablation for heavy periods – went to that appointment and she agreed…but wanted to do an ultrasound first to rule out any “surprises”. Not surprisingly….there was a surprise. Turns out I have a grapefruit sized submucosal fibroid at the top of my uterus. That explains an awful lot!
I’m scheduled for a hysteroscopy, D&C, endometrial ablation and laparoscopy next Thursday and I can’t wait! Strange to look so forward to surgery but it’s going to help alleviate SO many problems!
Thank you for your forum….it’s great to read other stories that support my own.
Laura
Hi Laura –
Best of luck on your surgery! I was so much better so quickly after my surgery that I was amazed. I had no idea how much chronic pain – and the worry that can accompany it – saps one’s energy. Glad that the post was of help!
Ariel
Thank you for your reply Ariel. I did not have a hysterectomy…. just a myomectomy. I took your advice and I went to the Doctor. I am going to the physical therapist and I am currently taking nurofen which has helped a little. If the pain continues I am scheduled for an MRI. I am thinking there is still residual nerve damage from before the fibroids were removed I have been reading other posts and the symptoms sound so familiar hip and lower back pain, pain radiating down my legs. It is a mystery as to why these symptoms are back. Hopefully it will all be resolved.
Thank you
Tracy
Hi Tracy,
My girlfriend had a myoectomy approximately a year ago. Following the surgery her lower back/hip pain was gone. It came back a couple of months ago and is fairly severe. She had an ultrasound done and it did not show that fibroids had grown any more. She will be starting physical therapy soon, I was just wondering whether your MRI showed anything and how hard you had to push to get your doctor to approve the MRI? At this point I believe it’s a compressed nerve but we are having a tough time getting the doctors to approve her seeing a specialist so that we can start narrowing down the actual cause of the pain.
Thank you, Eric
Hi Tracy –
Thanks for checking back in and giving us an update. Physical therapy, Cymbalta, and time were what helped me reach my current status. Most days I can do most things, which is a lot better than it used to be.
Best of luck on figuring out what is going on and in recovering your health!
Ariel
For the past couple of years I have been getting pelvic echos done to monitor my submucoscal fibroid. I am 45 years old with no children, happily married, a marathon runner, triathlete and my left hip and knee has been bothering me for a few years now. My period has always been horrible, but over the past few months it has turned into a nightmare from hell. I never want to be a girl again! I go through a whole box of super tampons on my worst day and my period is lasting up to 10 days with spotting after my period is finished. I get spotting especially during swim or run speed training. I also feel the need to pee all the time. Thank goodness, I got severe anemia this past January and the ob/gyn finally put me iron supplements and ordered a MRI so that they can send me to another hospital for surgery. My fibroid has grown from 3cm to 5cm over the past 6 months. The problem here in Japan is that no one is having kids, so there are few ob/gyn able to perform surgery. The Japanese government wants more women to have children, but this is a ridiculous policy if there is a shortage of doctors! At the hospital yesterday, I waited for 4 hours just to get examined, then the ob/gyn said that his surgery schedule is so booked that the earliest he could perform surgery is January 13th, 2008. This surgeon is very well known and I immediately felt that I could trust him completely. He has been the first ob/gyn that says the facts and really listened to me tell him about my situation. Today is June 3rd! He suggested putting me on GnRH, hormones, to help shrink the fibroid and to stop my period for 6 months prior to surgery. Here in Japan birth control is not available except for special circumstances. Right now, I am checking with another hospital to get a second opinion and find out if 6 months waiting time for surgery is the typical situation. I am so happy to find this site!
Brioche –
So sorry to hear of your fibroid miseries, but glad that my site is of some help. I hope you find relief soon and can get back to enjoying your active lifestyle without any more pain!
Ariel
Thank you all so much for sharing your stories. I have suffered from endometriosis for 16 years. In the fall of 2007 I began to have severe pelvic pain and many times I could not get up from a chair or walk across a room without holding on to things. In November I had yet another laparoscopy to cleanup the endometriosis and adhesions. Since the surgery my upper left thigh has been numb. About 2 months ago the chronicpelvic pain re-appeared and along with it came pain all the way down the back of my leg radiating into my feet. This was mainly on my left side but my riggt side had symptoms just a milder version. My feet and toes go numb and they tingle/burn. I asked my obgyn about the pain radiating into my legs and feet and he said it shouldn’t be related to my female problems so he scheduled me an appointment with a back doctor. I kept the appointment and I asked the back doctor about the probability of the pelvic pain being related to my female problems. Again I was told it was unlikely. My obgyn scheduled me for a hysterectomy at my request. I had the surgery 3 days ago, June 3. While performing the hysterectomy the doctor found a fibroid tumor on my back pelvic area. I didn’t get to talk to the doctor about this tumor yet but he gave my husband a picture and it appears the tumor is about 6 to 8 times the size of an ovary. Your website has given me hope that my leg and foot pain may have been a result of a nerve compressed by the fibroid.
Hi Myra –
And thanks for sharing your story with us. I sincerely hope that your hysterectomy gives you relief from the pain and numbness you have been experiencing. Best wishes on a speedy and complete recovery!
Ariel
Ariel, thanks for sharing you story and the all the following stories… . It is refreshing to hear that I am not alone. I am 38 years old – attractive mother of two awesome kids and a (almost always) great husband – we live in N. CA have a great lifestyle and busy life . I too have been experiencing dehabilitating tingling in hands and feet. After my second child, I was diagnosed with hyperthyoidism in 2004. My throid has been normal for over 2 years with no meds; but unfortuantley i’ve suffered an unexplained right flank pain.. after seeing my general Dr who ordered Ct scan & referred to the OBGYN with no difinitife findings, I was referred to urologist (for blood urine) cystoscope exam / voiding test. I was then referred to a Rhemutologist (presented fibromyalgia symptons); and then referred to a neurologist who tested for nerve-ending damage and ruled out many ill-fated diseases. After no diffinative diagnosis, I gave up and felt it was all it was my head…. until it presented itself again – My obgyn wants to perform laproscopy in my right flank area to rule out fibroids/endometrosis. A little nervous with the incision / scaring part of the procedure…. my fear is that I have fibromyaligia and that is the cause of the my pain. No one else on this blog has reported other symptons like overall general body pain, stiffness in joints, etc. this is my first posting relative to my illness. I seek your support and stories. You all have inspired me to write. Thanks and good luck!
Hi Jill , My name is Kim and I also have a diagnosis of hypothyroidism. I have numbness in my feet and the endocrenologist told me that the numbness can be attributed to the hypothyroidism. My levels are back to normal but the numbness hasn’t gone away.I spoke to my doctor and told her that I needed a second opinion. But I also have fibroids and my abdomen has been distended. I believe that the reason for this has to the fibroids and I think that they may be compressing a nerve. Backpain pelvic pain, leg pain, weakness will it ever end.I have been out of work for 2years. I have had _MRI(s)_CT scans and nothing. I have also seen neurologists,.they were puzzled. I have to laughter to keep from going crazy. Sooner or later I will find out the truth I will settle down after I get the second endocrenologist opinion.If not then OB/Gyn here I come I will come back to post my outcome.
Hi Jill,
Good luck to you, too! Your symptoms sound complex and debilitating. I hope you can get to the root of it all and quickly. Nerve symptoms are no fun and it’s especially destructive to feel like it’s all your head. It leaves you vulnerable to not getting a treatable condition taken care of before it progresses to longer term nerve damage.
I find it interesting and hopeful that your OB/GYN is recommending laparoscopy. That was the turning point in my case. And, the good news is the recovery from it was not too bad, at least in my expereince – minimal scarring and fairly short time back to full activity. Again, best of luck and let us know how it goes!
Ariel
Hi Ariel,
I wanted to thank you for sharing your story. I have been recently diagnosed with fibroids (multiple) one 9 cm and about 5 other smaller ones. I have always had very long and painful periods every since puberty 8 days being typical for me. I was actually just doing research on the internet as my Dr referred me to a gynecologist and I have agreed to have a myomectomy done on May 1st. I had been complaining to my Dr the past two years that I have been suffering from back pain (frequent bladder infections and now tingling/numbness in my stomach). she had done various test and found nothing wrong with my bladder nor my kidneys but my pain had persisted. I finally had an ultrasound done since my pain in the abdomen now was ocurring outside of my periods to reveal that yes I have a very large fibroid the size of a baby’s head or like me gynecologist refers to now the size of a foot ball. I look in the mirror and look as if I was 3 months pregnant??? I’m a little scared about the operation as it will be my 1st (no children yet). I’m 34, I work out but even that now is hard for me to do. I’m finding myself constantly exhausted and tired, with little to no energy, and I do hope to be able to have children soon. However now, sex is extremely painful and my Dr has told me that unless I get them out there’s really no space for a baby., but I was informed that once the operation takes place the pain should vanish. I really don’t feel like my regular self but at least now i now that it will be soon that I’ll be back to something close to normal. :)
Sincerely,
Janine
Hi, I am so glad that I found this site! Thank you Ariel for sharing your story and making this space available to others.
I also was diagnosed with a 3-4cm fibroid ( and a few smaller ones ). I found out about them after being sent to the hospital for a blood transfusion. Constant profuse bleeding had caused anemia.
I immediately changed my diet- my husband and I were used to having large quanities of ice cream every day – and I Love chocolate! Neither of us are overweight though surprisingly:)
We got rid of the ice cream and chocolate – which turns out to have estrogen mimicking habits- which helps the fibroid to grow!
I started using natural progesterone and taking chasteberry tincture to regulate hormone production.
Well it worked! for 6 months I had no symptoms to speak of and was feeling very healthy- then… we fell off the wagon and for the last 3 months we have been indulging like old times.
I guess you never really get away with anything:) Because the last 3 days I have been having symptoms exactly like the ones you all have been describing! Back pain, pain in the hips- down the leg. Time to clean out the cupboard again.
The question I had for ya’ll is- did your fibroid ever cause a low grade fever or intestinal problems. ( I’m trying to rule out anything else )
I’d appreciate any feedback! Thank You , Becky
Thank you for sharing your medical condition. I’ve been dealing with chronic pain in my lower back and right hip down to my big toe for eight months. I’ve seen orthopedics doctors, neurologists, physical therapist, and the pain has grown excruciatingly worse. The pain is mainly weight bearing. The MRIs & x-rays found absolutly nothing. Pain pills are all doctors have to offer me but they do absolutly nothing. It really sad that doctors can’t find anything accept a large mass(fibroid) on the lower right of my uterus. I asked my obg gyn if the fibroid could be causing the pain. He told me no. Well, six months later, no answer for the pain insight, I’ve decided to have that dreaded hysterectomy just to get relief from having to go to work limping and suffering from pain all day. After reading your story and many of the replies, I’m praying that maybe it’s a fibroid that’s pinching a nerve and s;dp that there is no permanent damage to the nerve. Thanks again for sharing.
Over the last couple of years, I have had problems with fibroids. Over the last few months I have had all the symptoms as described above by others. The severe leg pain, the excessive bleeding, clots bigger than I thought possible being passed, severe anemia….etc.etc.
I was given oral anibiotics at first because I was told it was an infection irritating the area, then progressed to hormonal therapy ( which simply gave me acne and facial hair) pain meds, and contraceptive pills to stop the breakthrough bleeding, and naprosen to stop the heavy bleeding during my period. My last ultrasound indicated a fibroid tumor 8cmx8cm plus some other small ones. ( My last ultrasound 2 years ago I could have sworn I remembered a 5cmx10cm fibroid, but maybe it was simply an error in measurements)
I am at the point now where I can no longer stand the pain in my leg, it is worse in the morning and at night…to the point where I need help at times to get dressed. I have insisted to my MD that it has the be the fibroid causing the pain ( because all the pain in on the same side as the fibroid) but she tells me that the fibroid is much too small do an invasive surgery on, and that my only option is to continue with hormone therapy until I hit menopause.
I am 33 years old…….I can’t bear to have to deal with this for at least another 10 years!
Can anyone tell me if 8cmx8cm fibroids are considered small? Should I put up a fight or simply accept that I have something I have to live with for a long time?
I’ve had Uterine Fibroids for 19 yrs. I know I have 7 of them. I put off surgery waiting for menopause to shrink the fibroids. I haven’t had a period for 1-1/2 yrs but all of a sudden one is growing and causing the symptoms in legs, feet and back that you have said. It is now the size of a grapefruit protruding out of my lower right abdomen. I have gone from a size 8 to a size 20 in less than 9 months. I know I need to go to a doctor but I have no insurance and noone wants to help. I had to quit my job last Oct due to back pain from discs in my neck. That job did not have insurance either. In NC, you do not get any type help such as Medicaid or Disability without a doctor verifying your problem. I have no doctor, no insurance so I get no help. It’s a vicious circle. Our health dept won’t even consider looking at me without payment of money up front. I don’t have 3000 dollars to even make a start in getting this fixed. I live with my boyfriend and times are tight and there is no money. Sometimes I just think I’ll have to get so critical that emergency care will have no choice. It’s a sad day when they put a price tag on your life and if you can’t pay the price, you just get worse until you die, I guess. I’m scared of permanent damage to my body that when it gets too bad there will be no fixing it. I pray God will make a way for me somehow.
Thank you for your posting. I have recently had a large ovarian cyst, about the size of a cantelope, and a fibroid, about the size of a grapefruit, removed. Like you, I was so relieved and felt different right away.
But, like you, I can tell that there is lingering nerve damage. I’m not sure what to do. Is physical therapy the only thing that can be done? Have you tried accupuncture or anything else?
So far, I can still barely walk or stand, just like before hte operation.
KVS
Hello, I just came back from the OBGYN and wanted to do a little research and stumbled on this website. I had an ultrasound a week ago and today she told me I have a fibroid aprox. 8 cm. She told me they are rarely cancerous and not to worry and to schedule another ultrasound in 6 months. Does this sound reasonable? I had severe back pain 3 months ago and couldn’t walk-had to go to the hospital and get an epidural- i wonder if there is any correlation? Also I sometimes have severe pain in the pelvic area that comes and goes when I walk. Could my fibroid have something to do with my lack of energy and poochy tummy? I haven’t had a period in over 2 months (before they were sporadic and sometimes heavy) and she said at the age of 48 I could be entering menopause and not to worry! Any thoughts out there?
Thanks
As i read this article, i remembered my aunt who is suffering a heavy bleeding. She always felt discomforts and when she go to the doctor she was diagnose with fibroids or myoma. Good thing she already gone through with the surgery. Again this is another eye opener to all the women to take care good care of their health. Thank you for sharing this one.
Thank you for your post- I am a 31yo currently “walking around giving birth” to two fibroids the size of tennis balls. I have had the same thought about the movie alien and have nerve/back pain, and am glad to hear that you went through all of that and recovered with a positive attitude. Thanks for the inspiraition!
Yeah,
Fibroids arent nice at all. I have just met the man of my dreams- ticks all the boxes A successful, attractive business man- I know he will not even look at me with a belly full of fibroids, looking like I am 7 months pregnant. All I can do is cry.
God has forsaken me.
I want to say thank you for your story. Im going through a similar situation. My Dr says that the fibroid doesn’t cause pain. I have been in pin for te last four months and it is actually blocking the right tub. Cause of this I have just had a miscarriage. It will take 6 to 9 months now to see a gyno. I call in sick to work when I just can’t seem to walk and im in a really bad cold sweat. The girls at work told me to go to the hospital when I get that bad and I would see a gyno sooner but really it’s not true.
Hi Ariel,
I have just found your posting after scouring the internet for some proof out there that I am not going insane.
I have yet again given up the struggle to go about my daily routine at about 3pm and taken to the bed. I feel I cannot go on any longer.
I turned 50 at the end of April this year. I am in a very happy relationship and have much that I am working on or working towards in life. I lost my 11 year old son to cancer in 2007 but I want to set the record straight that this has nothing to do with my state of mind at the moment. Yes, my world turned upside do then but I was back on track, writing, studying, teaching and exercising. I was fit, svelte and content. Last year everything changed
In November 2011 after months of discomfort and weird funny turns I discovered a large mass on my lower right abdomen. It was sitting right there and very easy to feel. I got a terrible fright and was convinced I had just found a malignant tumour. After a panicked visit to my GP who thankfully sat up and took notice, I had a CT scan with dye contrast in my local hospital. It confirmed I had several uterine fibroids, the largest being an 8x8cm fundal. One of my fallopian tubes was swollen and only one ovary visible due to being blocked by the fibroid. My colon was severely backed up and they found deep pelvic venous congestion with prominent vasculature. I was referred on immediately to a gynaecologist. My bloods came back with a high but not terribly high CA-125 reading.
My appointment regardless of urgency did not materialise until Feb of this year. After my consultation and examination my gynaecologist told me she wanted me in asap for an MRI and with a bit of luck I would be suitable for UAE. I was given a leaflet and went home feeling relieved. However, when I read what was involved and did a bit of research I discovered that the procedure has massive side effects and only ever will reduce the fibroid by 50%. Infection, chronic pain, nearby organ contamination and dreadfully diminished sexual sensitivity were some of the jollies that went along with the package. My spirits plummeted yet I was content that my MRI was imminent for I felt so awful.
Let me give you an idea of my symptoms and I do hope someone out there can say, “yes, I know what this woman is talking about”.
Prior to diagnosis 2010 -2011:
Sudden bouts of fatigue and weakness
Weak arms – holding a fork was tiring (felt like I had been doing press-ups all day or had clipped a field load of hedges with a rusty clippers.
Slurred speech
Rapid heart beat and ectopic beats – spent two days in hospital ecg, echo, stress test, bloods, holter monitor (Diagnosed with ectopic heart beats but no other problems)
Regular low blood pressure
Near fainting spells
Dead feeling in my right arm or travelling pain sensation – fled to doctor as thought I was having a stroke – nothing
Dreadful constipation – had colonoscopy (clear)
Strange pressure sensation and buzzing feeling in the same place along my thoracic spine/colon area – pointed out to doc several times (he suggested stress)
Discomfort wearing my jeans
Discomfort leaning across table or bending down
Exercise ability diminishes drastically – prior to this 20/40 km cycle 4/6 days a week, Hill Walking, Power Walking, Kick Boxing
Notice my abdomen swelling and feel fat. Connect it to reduced exercise and cut down on food intake.
Develop low blood sugar hypoglycaemic symptoms regularly: shaking hands, trembling, weakness, craving, starvation feelings
Begin getting up at night to snack as stomach eating me up
Trips to bathroom increase during the night with frequent urination
After Diagnosis 2011 – 2012
Enlargement of Fibroid
Pressure/Pressure/Pressure on bowel, bladder and spine. Doctor prescribes daily laxatives
My legs feel like they are carrying a ton weight – standing for too long is out of the question.
Sitting upright for too long very uncomfortable
Feel like I am about to give birth
Try to keep up some walking but get breathless and discover I am waddling like a pregnant woman – Too much pressure on legs
Cannot lie on my right side as it sets my heart off racing and pressure builds up on my colon
Nausea – Feel my fibroid is rising and pushing up into my stomach. Feel full easily and stomach feels irritated and raw.
Either starving or stuffed feeling
Finding it hard to regulate my temperature. Either roasting or freezing (chattering teeth and shaking)
Terrible crashing fatigue – can no longer do all my housework or gardening
Episodes of near fainting
Palpitations and near panic attacks
Pain in my back and a pressure feeling in my throat
Neck and shoulders begin to seize. Difficulty sleeping with neck pain
Computer work or sewing machine crucifying with fibroid pressure in abdomen and neck pain.
Strange feeling in my left eye.
Feel dizzy and lightheaded on and off
My most recent developments:
April 1st 2012 I wake at 5am to go to the bathroom. On getting back into bed and lying down, everything begins to spin. Spinning stops after about 10 secs. I turn on my right and spinning starts again and then stops. Panic. I turn back over and spinning again. What the hell is going on now I ask myself?
Next morning on waking all seems okay until I go to the bathroom. Bending over I lose my balance and fall to the side. Oops! Choose to ignore it. Undressing for my shower, I fall over again. Now I know something is up. Cannot close my eyes in the shower as balance goes. I stagger down the stairs and ask my partner to get me to the doctor. Pressure and pain build up behind my left eye and left side of head.
Doctor says possibly vertigo but cannot be sure so he sends me for an MRI (he is concerned as my son died of a brain tumour 4 years ago). Now I am really stressed and head straight for A&E. I am admitted and burst into tears. They are subjecting me to all the tests that my son had. They want to do CT of brain as no MRI onsite. I am convinced I am dying or just about to have a brain haemorrhage. I keep crying and crying. My balance is all over the place and I feel so tired.
CT comes back clear but now I have a whopper of a headache and cannot focus my vision. I feel like my head is bobbing like one of those nodding dogs you see in car windows. Hospital send me offsite to get MRI of brain. Results back clear but still no balance. I remind them of my neck problems and fibroid. They see no connection and dismiss it immediately. On drugs for vertigo but they have no effect. Am sent home 4 days later – diagnosis viral vertigo (they couldn’t find anything wrong)
Am referred on by hospital to an ophthalmologist to have eyes checked because of on-going pressure on my left eye. That test comes back clear but he believes my balance may be related to my neck issues. He refers me back to my GP for a cervical spine x-ray. Am still awaiting those results.
May 4th – MRI to check size of fibroid and position. MRI technician has to help me on and off machine as my neck is killing me and am dizzy. Feel like I have whiplash. He says fibroid is a whopper and advises me to get a follow up appointment with my consultant as soon as possible. The appointment arrived by post today. May 28th! I can’t wait that long. There will be nothing left of me and I fear permanent internal damage to organs or spine.
May 9th 2012 – nearly six weeks later and my balance has not returned. No one is interested in looking any further. My balance gets worse if I have been sitting in a certain position for too long or if I read for a while. My insides feel compressed and my stomach gnawing and raw. Terrible pressure on my spine and bowels. Fibroid pushing up through my abdomen like a submarine. Am finding it hard to settle into a comfortable position in bed due to pressure and racing heart. Fatigue unbelievable and depression settling like dust on me. My quality of life has gone. I can no longer function. I am tense, nervy and perpetually stressed. I am no fun at all. Little things seem like endurance tests. God bless my partner for he has great patience and says he loves me. I feel very low and vulnerable. My normal active, strong and healthy self has disappeared. I feel I am vanishing bit by bit. I stare in the mirror at my reflection and try to find the woman I used to know and used to be but she is far away. I have put on 5kg in weight and none of my clothes fit me anymore.
I have raised the issue with the doctors of the possibility of a connection between my balance problems and my fibroid but they just shake their head and say that a fibroid would not cause such symptoms. I disagree with them. I am the one who is experiencing everything and I know there is a link. I am not a fool and not a hypochondriac . This has to be nerve compression. I had no problems until recently. I have plans for my life and have the love of a wonderful man. I really do not have time for this and am not looking for attention. I also do not buy the theories they try to run by me such as “maybe you need bereavement counselling” or “you have been through a lot of stress, haven’t you?” or “maybe you should consider anti-depressants”.
Aaaarrrggghhh, I am not suffering from depression and am not suicidal. I have an alien growing inside of me that is taking over my body and destroying my health and wellbeing. Will someone listen to me, please.
I don’t care what all the websites say about not worrying about fibroids and if one more doctor says to me that they are harmless (just because they are mostly benign), I will punch him or her right on the spot. Harmless my foot!!! They have destroyed me down to my very soul.
I was wondering if you ever thought of changing the structure of your website?
Its very well written; I love what youve got to say. But maybe you could a little more in the way of content
so people could connect with it better. Youve got an awful lot
of text for only having one or 2 images. Maybe you could space it out better?
I am soooo glad I read your blog. I have been suffering now for past 3 years with Sciatic nerve pains that led to blood clots and foot drop and nerve damages. Last year, while workign out, I realized I had a big lump by my belly button and they think it is Hernia. Then followed episode was right around before my periods, I can’t go pee. It is all okay thorugh the month. My urologist thought I had MS. But after variety of tests, it was concluded that it is my harmones. I am still so puzzled. I like to run, but my numb toes in only one leg is driving me nuts.
Today at now a new Primary Care doctor, he said I had bad fibroids and it would be better if I can go and have this looked at by a GYN so I can do Hernia and fibroids together. I have murderous bleeding and I look pregnant before my periods…almost like 6 months. I am only 41, but this is hellish if my fibroids continue to grow more. It could be that my Fibroids are pinching my nerves. I am so sure about this….I am so tired of going to Physcial therapist, accupunture and Chiropractors.
I hope I have answers from my OBGYN soon. Can’t wait to see her in two weeks to figure out my situation.
I hope it is my fibroids and it can be removed. I am pretty healthy and love to work out but it is going south month after month.
I cannot thank you enough for sharing your story with others like me that are going through, almost, the same thing. My issue started with
so aggressive that I ended up walking with the assistance of a cane
Thank you for sharing. I ran across your post while searching for answers to extreme hip pain. I too have been diagnosed with fibroids and have had my left ovary and Fallopian tube removed due to a large benign tumor about 10 years ago. I would love to hear how you’re doing now. I have been in so much pain I’ve been pretty much bed ridden for the last year. I finally have an appointment scheduled for the 18th of March and I’m expecting the Dr. To order a hysterectomy. I am nervous at the prospect of going into surgical menopause as I just turned 36. Are you on hormone therapy? If so, can you share your experience with HRT with me?
OMG! you don’t know how much these posts have eased my mind. I am a distance runner and have had a problem with a numb foot for 2 months. Now 2 weeks ago I ended up in the ER with pain in my back and down my leg so bad I had to be carried into the hospital. I had been for an ulrasound a few days before that because of what they thought was an enlarged ovary. It turns out that I have a tennis ball sized fibroid attached to the outside of my uterus. My primary doctor and the gyno say my nerve problem has nothing to do with this! My chiropractor, however, is sure this is the problem. Thank God I won’t have to experience the long drawn out process that you have gone through, I am scheduled for surgery in 2 1/2 weeks to remove it. My mind has just been running wild because I don’t want to have nerve damage to my leg and foot. I am constantly making that foot and leg work overtime to stimulate the nerves to work. I have a daughter that is an athletic trainer and she says that the nerves are not firing correctly right now because of the pinching but to continue to make them work if possible. I am praying that after the surgery all will return to normal. I can’t imagine going thru this for 6 months or more! Thank you so much for sharing.
I have been dealing with multiple fibroids from the lord of hell for over 10 years now. I had been keeping a diary but my symptoms occur daily now. The pain,dizziness,uncontrollable numbness,collapsing,nausea, boating, heaviness, insomnia then restless leg. When my multiple fibroids move the excruciating pain makes me howl and curl up into a ball. The only thing that helps are shots of demoral which I get at the WE.They keep sending me home or running test but its always the same my fibroids continue to grow and control me. I can’t work because I keep collapsing at any given moment. It’s so bad I had to apply for social service because I didn’t have insurance anymore. I need surgery but it keeps getting put off. My faith and sister keep me sane but I’m about to lose my mind.
This is a very late reply but i hope you get it somehow. I am going through the exact same thing! I just burst into tears this afternoon when my dr recommended hysterectomy even though i already have my kids. But i was still unsure because no one has told me that my hip pain has anything to do with the fibroids (the drs are all focused on the more overt symptoms like severe cramps and bleeding). But i have known for a couple of years now that something is putting pressure on my hip joint. So thank you for sharing your story! This makes me feel like i’m not crazy!!!
I am reading all of your stories about your fibroids and I have had problems related to fibroids for at least 10 years. I am sorry you all have had these problems but am so relieved to hear that my pain and suffering has not been made up in my head. I just turned 50 and my body feels like it is 80 from this horrible huge fibroid in my uterus. This is a condition that no one has in my friend group and no one seems to understand my pain and problems from it. I must admit that I have had irregular bleeding and problems for 10 years but gynecologists have only offered me a hysterectomy. I have friends that say why don’t you do it already? I have also researched and many women are bullied into it and then have other health problems or their bladder falls out and the hormone problem is immediate. I have been fighting the dreaded hysterectomy all this time. Every year my body gets more worn down and new symptoms come up. I have not been to a gynecologist for 3 years because the last visit she took away my progesterone that had controlled the bleeding and only offered a hysterectomy with no guarantee to keep my ovaries for hormone control. I left there distraught and feeling defeated thinking I would have the hysterectomy and then decided to try natural supplement from a wellness center to shrink fibroid. I did that for a couple of years and sometimes it was still just a guessing game on controlling the bleeding. Last summer, the problems just got so bad that I was depressed and not sure what to do. I discovered acupuncture and Chinese medicine helped with bleeding and pain control. Even that, sometimes is a guessing game. This whole time I just kept losing hope that anything could be done besides a hysterectomy. Well, I am on the internet all the time. I believe we have to gain knowledge about our health which gives us power to figure out which treatment is best for us. I discovered that my gynecologist didn’t give me all the options because she doesn’t perform all the options. There is a procedure that is less invasive that is fairly new. It has been done in the last 10 years. It is called a Uterine Artery Embolization and it is performed by an Interventional Radiologist. I am scheduled to have this done next week. I am excited that I found another choice but sad that I had to wait until I found it on my own. My fibroid is the size of a large grapefruit filling my uterus and is the size of a 3 month pregnancy. My stomach is huge and my body feels like it is breaking down. Recently, I have been having foot pain. After making an appointment with a foot specialist, I read all of your comments about your foot pain. I didn’t think about the fibroid causing it. If my gynecologist had told me 3 years ago about the embolization, I could have already had it. Ironically, I went to my same gynecologist last week for just a pap smear and mammogram. She asked if I still had problems with my uterus. I said yes and I have an embolization scheduled. She said that she wasn’t a fan of those because it causes such cramping and she probably would have to do a hysterectomy later anyway. She also said my fibroid had grown quite a bit in 3 years. That really made me angry because she should have given me the information about the embolization 3 years ago!!! I will say if it doesn’t do enough, then I will decide about the hysterectomy but she won’t be doing it. The Interventional Radiologist who is doing my embolization has had great success in stopping women from having dreaded hysterectomies. This procedure stops the fibroid from living and growing and can shrink it 40-60%. You aren’t put to sleep but mildly sedated. They inject particles in the uterine artery that goes in and kills the fibroid and then it withers down and becomes scar tissue. If you are young and still want children, you need to make sure this will not stop that option. Since I am 50, I don’t have a problem with it keeping me from having children. I am bothered by opinions of some who think I still should just go for the hysterectomy. However, I will try this embolization and then figure it out later. Statistics show that many women who originally had the embolization only to help with bleeding until they could schedule the hysterectomy, ended up having such great success that they cancelled their hysterectomy surgery. I will take those odds. I am told there will be some cramping. If it helps with all these horrible pains the fibroid has caused, it will all be worth it. I will update you all after the embolization so you can judge for yourself if it is for you. Good luck to all of you. I feel your pain. I hope my story helps you.
Oh. My. God. I found this post after wondering to myself if the two tennis ball sized and several golf ball sized fibroids that I’m dealing with could be causing my neuropathy. I can’t believe it. I feel like I’m just starting to figure this out and it’s been a year since my neuropathy diagnosis. My neurologist calls it idiopathic- because it’s not related to my blood sugar- and we don’t know what’s causing it. I have been searching for answers and I feel like this could be an answer! Thank you.
i am so glad for this site i too have pain in my legs and lower back.I was told i have small fibroid”s and one that’s bigger outside the uterus.I went to two gyn that only offer Naproxen hello i am allergic to that medication.No help I have an appointment with a fibroid doctor you have to be your own advocate i am fainting dizzy and have anemia.Now you don’t have to be bleeding heavy for you to have low iron anemia.Example i have ten to twelve days of spotting and then the full period of five days with so many days and those months of not knowing that i had the low iron.Plus every months it could be 15 days of spotting instead of 10 r 12. Anemia of Low iron can make you have around your menstruation nerve pain. I am only sharing my own experience and my own research with all the medical test i had and all the symptoms.God bless you all and don’t give up. Im looking forward to feeling better removing fibroid and will try healthfood store remedies for fibroids pms and give it a try before something more drastic. Wishing you all the best there is a lot of info do your own research.