I think I first heard the word “fibroids” in the late 80’s or early 90’s. It was when my aunts went to the hospital to have surgery for theirs. I was too young to get the full explanation, all I really remember is being brought to visit my aunty in her hospital room and seeing my mom crying in the hallway because whatever was happening meant her sister could no longer have children. First one aunt had her hospital visit, then the other.
I understood that it was an issue that affected feminine parts, something to do with womanhood and at that stage in my life it all seemed very grown up and far removed from me. My aunts were in their mid 40’s when they had hysterectomies and had their uterus (uteruses? Uterui?) removed because of pervasively growing fibroids. Back in those days, hysterectomy was pretty much what happened if you had symptoms bad enough to deal with. But before it gets to that point, I believe we can tend to overlook the indicators of what’s happening.
I’ve heard it from so many women — “I thought I just got fat” or “this is what happens to older women,” or “my belly got big over time.” Those are some of the symptoms you can see. Let me tell you about the ones I experienced that don’t show to the world.
Fibroids can lead to a number of negative effects, internal and external. They can affect your reproductive system, your digestive system, your urinary flow, your fertility, your general energy. They can cause pain and discomfort in your pelvis, your back, your stomach and more.
In hindsight, my symptoms began to make themselves apparent in my mid 30’s, slowly but surely. I ignored the symptoms as they began and for a long time, I didn’t realize how much my fibroids were beginning to affect me. Here’s what finally sent me to the doctor to see what the heck was happening:
- My period became a truly heavy and physically devastating experience every month. Like debilitating, curl up in the fetal position all day on the first and second days. Heavy flow, huge clotting, staining through clothing, too much.
- I became anemic from blood loss and my doctor ordered me to take iron supplements and eat red meat more regularly than I wanted to.
- For years I thought I had a “small bladder” because I’ve always had to urinate frequently. As my fibroid grew, it was like my bladder was on overdrive. I had to be careful to avoid accidents– when I have to go it’s more urgent than it used to be.
- At the peak of my fibroid issues, I would go to the bathroom 6 to 9 times a night. Imagine what my sleep pattern was like. Disrupted and destroyed, doing little good for my mind and spirit.
- The fibroid grew to the point where it rests on my bladder AND my lower back, so I have back pain now. Especially if I eat a full meal, I can feel how compressed it is inside my body, because of this foreign growth taking up so much room.
- When my back would really get to hurting and my body felt most uncomfortable and compressed, I tend to go to sleep. So bad sleep pattern + physical discomfort for me = naps at all kinds of inopportune times during the day. Affecting my productivity and business.
Over time even my body changed. Now my stomach protrudes and is hard in a way that it wasn’t in my twenties. I am told that’s because I have this 8.8 cm, softball-sized fibroid feeding on my blood, taking up room in my uterus and moving my organs up and around. This fibroid has affected my urinary and digestive systems, and made my monthly period an experience that’s untenable. It needs to GO. It was time for me to do something. But what?
There are a lot of people who claim to know what causes fibroids. “I have a friend of a friend of a cousin who quit eating (insert thing here) or got these pills on Amazon or drank a detox tea that worked for them so you should try that” — I have had many conversations that go exactly that way. I’ve heard it all at this point. Some say dairy’s to blame. Or eggs. Others say red meat or pork or poultry with all those hormones they use. I’ve heard that soy is a culprit and should be avoided at all costs. People tell you to try acupuncture or green tea supplements. There’s always an anecdote and an over-the-counter tea or pill you can purchase. Maybe these things can work for someone over time, I don’t want to be a negative Nancy if this approach is working for you and you can really see, feel and can measure for real that your fibroids are going away due to a natural remedy.
If you don’t have time because these things are growing inside you and affecting your day to day life, then there comes a time when you have to admit to yourself that a doctor’s appointment is the best recourse. I got to that point. They had to go.
Generally speaking, if your fibroids are smaller than 2 cm in size, your medical practicioner will encourage you to ignore them. If they’re small and they aren’t causing you any major symptoms, they’ll say don’t worry about them. But then if you ignore them, they can grow. As my fibroids grew, my ob/gyn encouraged me to consider my options.
I heard about uterine fibroid embolization, and I even once wrote an article for O magazine on the topic of better ways to treat fibroids, that article was all about Ulipristal, which could be the first long-term oral medication for the treatment of fibroids, and the Sonata System ultrasonic device.
Unfortunately my biggest fibroid clocked in at 8.8 cm, making it too big for those procedures.
I was encouraged and I chose to have an abdominal myomectomy. Why? Because it was depicted as the most sensible, typical way to get in, remove the fibroid without it leading to degradation, and end my symptoms without a doubt all while leaving my uterus and ovaries intact. From the ultrasound and the MRI I had, it looked to be a pretty easy, routine in-and-out procedure.
I had my surgery on a Tuesday. I was discharged that Thursday afternoon.
Right now, I can honestly say that I regret my decision.
When we did the ultrasound, it appeared that my fibroid was pedunculated, which means attached on a stalk. That typically makes for a simple procedure. Then the MRI made it seem like the fibroid was submucosal, which is more attached and more involved, but still a totally standard procedure. But then, when my doctor did the surgery and cut into me and could see what was really happening in there, she realized my big fibroid, the 8.8 cm one is cervical, or attached near the cervix. Apparently that’s a really vascular area, so it would be potentially dangerous to remove it.
She said it would have resulted in them having to remove my uterus and blood loss and then possibly needing a blood transfusion with a risk for unplanned for complications. She was not prepared for me to wake up to find out that I had been given a full hysterectomy.
My doctor did remove one fibroid, which measured around 3 cm. But that’s all she was able to do.
When I finally came to my senses and my doctor visited to tell me what happened, I could see how disappointed she felt to not be able to complete this surgery as planned. The vibe was subdued. The whole medical team was upset afterwards and let me know that this wasn’t supposed to go this way. This wasn’t what anyone wanted. Removing one 3 cm fibroid wouldn’t change the symptoms I’m experiencing. They were disappointed and so was I.
I have a picture of the fibroid they removed. Fibroids are white, flushed pink and red with blood from where they’re attached. It looks like a little round piece of chicken gristle or something. Pale and slightly pink around the edges.
Right now I’m healing slowly with a 10 cm cut along my bikini line, right under my stomach. Where your body hinges to sit upright or lay down. Everything hurts. Sitting, lying down, coughing, sneezing, laughing. My recovery time is expected to be 8 weeks. I can’t lift anything heavier than a gallon of milk. Bending over and sleeping on my side are impossible.
My mother-in-law came to stay with us for almost two weeks to help take care of me. My husband has been absolutely amazing, doing everything around the house. I would have been lost without them. Honestly.
After the surgery, my doctor recommended that I schedule an appointment with a doctor who specializes in embolization because they would have better results with less risk to reduce the size that way, now that they know where it is and what we’re dealing with.
How has the post-operation period been? Rough.
There have been nights where I have cried myself to sleep, and mornings where I have awoken in tears. There have been days where I just didn’t want to get out of bed. I know what it feels like to watch every hour go by and not fall asleep because of pain and discomfort. To count your days according to a never ending cycle of pills and an alarm clock of pain. There has been quite a bit of self blame, like what did I DO here.
I did what I was medically advised to do.
So what’s next for me? Heal from this abdominal myomectomy. I’m on 6 to 8 weeks of recovery and I’m at home living my best caftan life. I am on a 6 hour cycle of medicine and believe me, my body TELLS me when it’s time to take more.
In addition to acetaminophen and ibuprofen, the doctors prescribe opiods. They can come with some really negative digestive side effects.
I’ve now begun being able to do stuff like climb stairs like a normal person, cross the street like a normal person and I walk like the slowest speed on the treadmill right now but I’m doing my best to MOVE. Healing from a surgery like this teaches you how the body needs the right diet, plus steady movement in order to properly function. I’m doing my best to heal properly and taking it easy, as advised.
And finally I felt ready to write about all of it.
I’ve already scheduled the uterine fibroid embolization procedure soon. Later this month. I am scared because from all accounts it’s a super painful experience, but the results are supposed to be incredible.
I’m obviously frustrated about this whole journey, but there’s nothing I can do about this now. All I can do is pass along my advice for anyone pre-surgery.
I learned a LOT in this process, so I’d like to share for anyone else going through it.
— Fibroids are astonishingly common. When you realize you have them, if you mention that fact to just about any woman they’ll then reciprocate with their own quietly kept story of fibroids, of endometriosis, of hysterectomies and ovarian cysts. There’s a whole secret society of survivors and women who have this shared experience., there are more of us than you would think.
— There’s an incredibly helpful blog post on Lingerie Addict, a MUST read that helped me so much as I wrapped my mind around what I was facing. Through her post, I learned about the Facebook Uterine Fibroids group. It has been a lifeline for me. Everything I’ve been through, someone else already has and there are literal post-surgery pictures to prove it. Joining that group let me know I wasn’t alone. There’s also a Facebook group for Uterine Fibroid Embolization, so being part of both has been great for informing myself further. If you’re going through this, I highly encourage you to read Lingerie Addict’s post What to Expect the First Week After Your Open Myomectomy, and this really helpful piece on Zora, What No One Tells Black Women About Fibroids.
— I don’t want to knock or discount any of the natural approaches to dealing with fibroids, I just have to be honest about my own experience. In some ways, I wish I had taken a natural or dietary approach really seriously when I first was diagnosed with my fibroids. That way I could have seen for myself if it could have made a difference. Hindsight is 20/20.
— Don’t just go with the first opinion. Get your ultrasound and/or MRI and ask for a second or third or fourth opinion if you have to. Consider the surgery but also investigate embolization, and any other alternatives available to you. Maybe the Sonata system could be a fit for your situation, who knows?
Fibroids can affect your body with a battalion of symptoms, and for me just living with them was no longer a possibility. But I wish I had investigated less invasive solutions instead of just accepting what my doctors recommended as THE best way to go. Hindsight is 20/20. I can go back in time and wish and could shoulda wouldaded this situation in endless circles, or I can learn from it and make different choices next time.
I have lots of time to think about all of it now.
Mug by Kazmaleje
I’m sharing all of this in the hopes of helping someone else make the right decision for them.
There are SO so many of us out here, suffering in silence with fibroids or healing from hysterectomies. Dealing with the anxiety and fear that builds up before the operation. I want to hear from you. Let’s talk about our experiences and let others know they’re not alone. I definitely want to write a follow up post on this, but I would love to hear from you first.
Do you have a fibroid surgery story of your own? Share whatever you’re comfortable with, and know I’m right there with you!
I had an abdominal myomectomy in October 2002. I was 38 years old. I didn’t know I had fibroids as they were small and asymptomatic until I got pregnant in March of that year. Everyone was ecstatic. We’d just lost my father-in-law to lung cancer and my mother was living with us because she was dying of metastatic breast cancer.
With my pregnancy the fibroids starting growing. I was in constant crippling pain. My doctor put me on narcotic pain killers but they didn’t help. I was in what was called ‘red degeneration’. The tumors had outgrown their blood supply and were dying but they were taking me and my baby with them. Finally in June I started having contractions at 20 weeks. I had lost the pregnancy.
I knew I wanted another baby but no way in hell was I willing to get pregnant with those things still in my body. My OB/GYN didn’t feel he was experienced enough to do the surgery. He sent me to an expert in Birmingham.
He wanted to do an abdominal myomectomy so as to not disturb the uterine lining. All six of my fibroids—the largest the size of a grapefruit—were submucosal, within the walls of the uterus.
My mother died in September of that year and I had surgery in October. It was incredibly difficult and emotionally draining. He assured me that he got them all, and that I would get pregnant again.
Recovery was an absolute beast. I remember being in so much pain and walking like Quasimodo for what seemed like forever. I was also grieving my mothers death compounded by the loss of my baby.
I had my first live birth in May 2004 at 39 and another in 2011 at 47!!!! Thankfully my fibroids have not come back and now at 55 I still have my uterus while most black women just a few years older have had hysterectomies. I am so thankful for my doctors and for the support I received from my husband and family to get through it.
I briefly posted my story online and took it down, because it’s a lot. Basically, I’ve had two myomectomies and finally a hysterectomy. My final surgery came with a host of complications that my GYN was not aware of until the day of the surgery. She thought quickly and called another doctor in. Almost 7 hours later I was out of surgery and in a lot of pain. I woke up with a tube in my nose that went into my stomach. All the doctors involved would tell me about the scar tissue from the previous surgeries and how that made things extremely complicated. I ended up having 5 major surgeries at once, to not only remove my uterus and my ovaries, but also remove scar tissue that was wrapped around organs, and getting an appendix removed (they could not unwrap the scar tissue from it). I still have my cervix, it was too dangerous to remove due to the amount of scar tissue on it.I woke up with a drain on the side of my belly and I was in the hospital for 6 days. It will be a year in June since I’ve had the surgery. I now have to apply hormones until I’m ready to go into menopause. Recovery was very difficult but I can now say that I feel pretty good, I no longer have constant pain, I am no longer fatigued, my skin cleared up, my belly has gone down. Overall, I feel much better. It was scary and very serious and I hope it’s the last surgery I ever have to have. If you ever have any doubt about any pain in/near your abdomen, please go to your GYN first and get an ultrasound. It could be as simple as a cyst or a fibroid, but at least you’d know. Unfortunately, my fibroids constantly came back, and that didn’t mean I was doing anything wrong/not taking care of myself. It just meant that I was more prone to this genetic mutation. Be educated and always do what’s best for you.
Hi lady – as you know, I went through some scary fibroid complications also…and I think one of the most annoying thing (for me) in the years that followed is that because fibroids are generally pretty common, I received a lot of brush-offs like “oh, it’s just fibroids! NBD!” or “hey, i had a cyst once!” – meanwhile, with a zipper scar across my body and having been in a coma for nearly a week…I could try to assure them that no, we didn’t have the same thing. But they’d also never take my own pain and journey seriously because to them, fibroids seem to fit in the NBD category. I’m so sorry you too have had to go through learning that they are hardly routine, and all sorts of scary complications and unexpected results can occur – and I’m so glad you are doing OK now (and I’m always here for you)
I got married in September 2000 and was diagnosed with fibroids in January 2001. We both felt a place below my stomach that was rigid and I had it checked out. I managed them for a long time, by limiting what I ate, exercise, and some natural remedies. I do believe anxiety and stress contributed to them as well. I lived with them, even though a couple of doctors recommended a hysterectomy. I was 34 when I was diagnosed and could not imagine going through menopause so early in life.
I suffered through EXTREMELY heavy periods, passing clots of sizes I couldn’t believe was possible. My iron was constantly low; the doctors and nurses couldn’t believe I was walking around. My iron was so low in 2013, I had to have a blood transfusion and IV iron treatments. Shortly thereafter, I was in perimenopause.
I still have the fibroids, but they are beginning to calcify. I still get pelvic ultrasounds to determine the size and monitor them. Recently, my doctor told me my uterus is equivalent to a 6-month pregnancy. I’m not sure what more she will recommend but I am no longer having a cycle, so there is that.
My heart goes out to all the women who are dealing with fibroids. Looking back, I could have done embolization, but it was so new, and I was scared. Twenty years later, I can’t say if I would have done anything differently. I just wish there was more research into why black women seem to suffer with fibroids more than other cultures/heritages. This is a fact I learned from a doctor.
I’m curious as to why you don’t want to just proceed with a hysterectomy considering your age? The odds of you being able to conceive at age 41 for a 1st time pregnancy are rare even without considering the issues with your uterus so I’m not sure why you’re going out of your way to preserve fertility. Uterine embolization is extremely painful. It’s not worth the hassle unless you are 25 to 38 and plan on have children immediately.
Lemme start by offering you a hug. Trust me, this is a good hug.
I am so sorry your surgery turned out that way. I had a laproscopic myomectomy in 2011 which removed all them bloodsuckers from my uterus.
But then by 2015, fibroids were back, ruining my life, making me look fat, bleeding 28 days a month. Anemic, no energy.
I ended up getting a partial hysterectomy. I was 43. And honestly, I’m a be honest, these have been the best 5 years of my entiire life. My uterus was running my life and ruining my life. And since I wasn’t squaring up to have no doggone geriatric pregnancies, I decided to let it go. And I do not miss it. So…unless you’re thinking of maybe having a baby, remember that a uterus does not define you as a woman. And if you have to part with it, it’s okay.
Before you have embolization let’s chat. I had and embolization in 2012 it’s been interesting
In Chicago, Dr. Nicole E. Williams saved my life. I am menopausal though, so there is that. I have been able to take Motherwort tea and a year in after Accessa procedure I am me again. Wishing you all the luck and best wishes. No one ever said Black women are predisposed and should not feel inadequate or ashamed but thanks to conversations like these we can grow and educate! Sending love!
Love the openness and candour of your post. Sending you healing thoughts and internet hugs. Your bravery will help you emotionally and help others also.
Keep positive and I wish you the best in the next round of medical events.
sent you an email!
thanks for the love! I’ll look into that motherwort tea. Congrats on having your health restored!
love you!!
I told my doctor I wouldn’t mind having a hysterectomy as my husband and I are child free and not planning to have a child. She said 41 is too young for a hysterectomy as it could plunge me into menopause.
Would you say the embolization is more painful than myomectomy?
Roslyn, WOW wow wow you’ve been through so much! So glad you’ve come out on the other side. So glad you’re OK. Thank you for sharing!
SO agree with your final message, it’s so important for us to be educated about what’s happening with us. I am glad you did what you needed to do to heal. Recovery is so rough. Glad your symptoms have improved so much!
Aly my love, I knew you had medical complications but forgive me for spacing that you also had fibroids! What a saga. I pray for the day when women’s medical issues are given the focus and attention we deserve because there has to be a cure for this someday. Hope you’re feeling great now. Big hugs <3
the doctor I’ll be going to has been doing embolizations for 20 years and says he’s done maybe 6000 of them. that reassured me. I hope you figure out a solution for yours. And AGREED, i also wish there was more research done on fibroids in general. There has to be a reason it happens to so many of us.
I receive your hug! I need a good hug. And thank you for the kind words. So sorry you’ve been through this too! I did ask my doctor about hysterectomy but because of my age she did not want to do it and push me into early menopause. that was the reason I was given.
Hi! You got the Ascessa procedure? I’ve been researching that, there’s not many doctors that to it yet. I’d like to try that before anything else! I have a 9cm that i’m concerned about. How did it go? Thanks in advance sweetheart.
I believe the decision is personal. I had a HORRIBLE time with match box sized clots, unending periods thanks to two large fibroids. My hysterectomy at 43 was amazing. It was done via laproscopic surgery so my healing time was about a two weeks. The fibroids were removed vaginally. Honestly that is where most of the healing had to happen because the tumors grew between the time I decided to have surgery and my surgeon was available. I had to strongly express my willingness to forgo fertility. That being said unless there are problems with your ovaries why would they remove them. Seven years later menopause is just starting to rear it’s ugly head when it should after my 50th birthday.
From my very first period at age 12 up to age 39, every single cycle had been a 7-9 day ordeal with massive tissue and excessive blood loss. Back in the 1980’s, the only thing OBGYNs focused on was endometriosis. At age 17, my doctor used a laprascope for exploratory surgery. Negative for endometriosis. Vaginal sonograms had not been invented yet, and nothing could be “found”. The doctor accused me of “making it all up”, but gave me a DNC to “clear out my pipes”. Neither me or my parents had approved that procedure, and I wasn’t pregnant. I was placed on horse pill sized birth control pills for 20 years to diminish the flow and pain, but I was still requiring heavy doses of tylenol and advil to make it through a cycle. My 1980’s doctor told my mom all my pain would vanish once I started having a family. Who gives a 15 year old child advice like that? Oh, did I mention he gave me an unnecessary DNC without consent??? Flash forward to 2003 and I am trying to get pregnant and the clock is ticking. Due to advanced in imaging equipment, it was determined I had several submucosal fibroids. My OBGYN advised me against a myomectomy due to the number and size of the fibroids, as it would leave my uterus punctured like swiss cheese (his words, not mine). He was also concerned that once the weight was removed from my uterus, it could tip back into my intestines and fuse to them, requiring more surgery. So I opted to wait and try to conceive instead. He told me I would never be able to get pregnant let alone deliver a baby as there was only a small part of my uterus that was healthy enough to grow a placenta. Well, I have a 12 year old to prove him wrong. However, I delivered 2 months early as the fibroids grew from baseball size to football size under pregnancy hormones. One or more of the fibroids took up so much space, was infected, and my body went into early labor. I almost died and my baby was at risk. I was able to deliver naturally and my 3 pound 11 ounce baby girl was immediately taken to NICU where she would spend the next 17 days. I was placed on round the clock antibiotics and stayed in the hospital for 8 days. I was out for 1 day and while nursing my daughter in the NICU, I was slammed with the worst pain of my entire life and was rushed to the ER. Now I had just delivered a baby 9 days earlier, so I knew exactly what a Level 10 pain would be like. The pain from my degrading and infected fibroids was way more painful and even morphine could not touch the pain. I was taken to the MRI, and one of the fibroids had ruptured. I required emergency surgery and had a hysterectomy to save my life. I was 40 years old at the time, my miracle baby was doing very well in the NICU – I was fine with getting rid of a uterus that did nothing but cause me horrible periods. One of the fibroids weight more than 4 pounds, which is more than my baby. When I woke up in recovery, I could feel the pressure was off my bladder and spine. After 6 weeks, my belly was totally flat and I didn’t look like I could have ever given birth. The surgeon removed my uterus and cervix but I was able to keep my ovaries. The surgery did slam me into early menopause and it was tough to recover from major surgery just after birth. Today I am healthy and consider myself very fortunate to have had access to adequate medical care and gallons of IV antibiotics.
Hello! I just had a hysterectomy in January. I had three fibroids, one taking up most of my uterus and two embedded in the walls. I am 49, no kids, don’t want them, so a hysterectomy was NBD for me. The surgeon left my cervix and my ovaries, so my recovery time was quick and I am not menopausal. My heart and prayers go out to all of you healing from procedures or dealing with pain.
I am amazed at how different everyone’s stories are. I live in an affluent area with good medical care but not everyone does. Let’s keep talking and amplifying each other’s stories.
Thank you for your openness on this, and please accept my good vibes as you recover. I found out I have two fibroids- a smaller but more symptomatic submucosal one in my cervix and less problematic but larger subserosal one on top of my uterus- on my 36th birthday in May 2018. I live in Canada where healthcare is mainly free, but getting referrals can take time. Thankfully My doctor got me referred to a gynaecologist for a second opinion of how to deal with the submucosal fibroid after she suggested I go on a medication that can shrink fibroids by 40%, but acts like early menopause. The gynaecologist said due to the size and placement, I was a good candidate for hysterioscopic myomectomy for the submucosal fibroid, which is removal via laser through the cervix. I had the surgery in June 2019 and my period and life have noticeably improved a lot. I went to another specialist to determine what to do with the subserosal fibroid, and a laproscopic myomectomy was suggested. But right now, because it sits atop my uterus and doesn’t interfere with my life I’ve decided to use natural interventions and changes to my diet. I’d also like to have a child, and I am turning 38 this year so I’m hesitant to go through such a large surgery at this time. i want to encourage Black women especially to request hysterioscopic ultrasounds which help to detect fibroids, determine their size, etc. And a good relationship with my family doctor undoubtedly helped, along with doing a lot of research and asking for second and third opinions before making decisions.
I’ve been hearing lots more about Black women and their journeys with fibroids. I know it’s so important to have these convos in the open. Thank you for sharing your story! *hugs*
Wow… sending you so much love and healing prayers. I can not lie, reading your journey was a bit difficult for me as it really brought my own fibroid trauma back to the surface. I too ignored my original symptoms until those same symptoms prevented me from doing the most basic things. So, in 2005, I spent my 30th birthday recovering from a myomectomy. This is the surgery that I refer to as my c-section delivery of 13 children, none of which I can claim on my taxes.
Unfortunately, two years later, I am dealing with my original symptoms and my fibroids have returned, with a vengeance. Not wanting to have to have another myomectomy, I take the approach of toughing it out. This “approach” leads to a level of anemia, that I cannot explain, complete with hair loss and a distended belly that measures at six months gestation. I always feel tired and just an overall level of malaise that is difficult to even explain. And then, at 35, I become pregnant with my second child. Pregnancy in your mid-thirties is very different from pregnancy in your early twenties. This pregnancy was even more challenging because I am dealing with the freeloaders (that is what I named my collective group of fibroids) that have invaded my uterus. I am in consistent pain as some of them begin to die off. However, my growing baby boy has also decided to use them as for soccer practice, all within my uterus.
Because of the size and number of fibroids that were inhabiting my uterus, I had a scheduled c-section at 36 weeks. My son was born healthy and am most thankful for that. Postpartum was not easy however while my mood improved, my fibroid situation did not. After one myomectomy and two c-sections, another myomectomy was not an option for me. Given the location and size, embolism was not an option either. An so I waited… and waited. My daily routine included prenatal vitamins and iron tables to help minimize my drastic level of anemia. Each month, I experienced pain that was indescribable… and for me that says a lot after laboring for 20 hours with my first child. I passed clots that looked I had multiple miscarriages on a monthly basis. And I bleed… I bled through my clothes. Needed two diaper sized sanitary napkins to go to bed and yet still managed to ruin my sheets. And the list goes on.
Today, I am 7 months post-op. I had a hysterectomy that removed EVERYTHING except my ovaries. The initial surgery was great, until a week later when I developed complications that in part resulted in sepsis, blood transfusions and a daily IV antibiotic that required a 30-day pic line. At times, it is weird to have all the PMS symptoms yet never menstruate. Night sweats are a real thing and now I am just trying to navigate my new normal. But, for as challenging as it all has been, I honestly have no regrets. The hormonal discomforts I currently feel have nothing on the living hell I had been enduring. That said, my only wish is that I had had more insight to this private society of women who have been quietly enduring hell and their bodies went in directions that few really talk about.
I know my journey is not unique, but my gratitude for this situation may be. My hope is that if I can help just one woman know that what she may be experiencing is not a singular event, then maybe my pain has not been in vain. Thank you Afrobello for creating such a safe place for sure pure expression and thank you all the other brave warriors who endeavor to share their experiences as well.
I demanded a hysterectomy. at 31 years old after suffering since I was 17 with fibroids. I was tired of fainting from low white blood count due to non-stop bleeding and debilitating pain. I was a frequent visitor to the emergency room due to fainting (thanks goodness I’m a Canadian.) I tried every diet, alternative medicines and did every other procedures in order to avoiding the hysterectomy. The fibroids came back after each procedure. The straw that broke my back was having to take prescription prednisone for a year just to get my white blood cells count to functioning levels. I’ll be 48 years old in 2 months , the hysterectomy to remove my uterus was the best decision of my life. My cervix and ovaries survived the ordeal; I thought I might go through early menopause but not so far. The recovery from surgery felt meh to me after living with the chronic physical and mental pain from the disease of fibroid.
My doctor delayed for years even though she was my doctor for almost 25 years. I knew at 18 I didn’t want kids. My period was a nightmare from the time it began at 10 and only got worse until I had a laparoscopic hysterectomy in September 3018 at 48. They took out 7.5 pds from my body. 8 large sized tumors. The only thing I have left is my right ovary. My doctor didn’t want to push me into menopause.
I recommend the surgery. Same day procedure and I stayed with my parents for a week. My quality of life is amazing compared to life prior to the surgery. The things we suffer in silence 🙁
I’m 37 and fibroids have turned my womb into one that looks like I’m almost ready to give birth. I have no children and doctors have recommended a hysterectomy. My boyfriend of 8 years broke up with me a week before Christmas because he wants to have children and does not want to get his hopes up. I’ve cried and prayed and found a procedure called ACESSA that I’m looking into now. It’s minimally invasive and will help me to keep my womb intact and maybe be able to concieve naturally in the future. I’m hopeful that I won’t have to plan my life around my period. Sigh… It’s been an extremely rough time.
Thank you for being so open and sharing your story. I truly believe that everyone experiences fibroids slightly differently but I’ll offer my story in case it helps someone else. I just had surgery last year as a 30 year old. I wanted to postpone having it but as I had several large fibroids ranging from 6-11 cm, I went ahead and had the surgery as I am hoping to have children soon. My surgeon was able to preform a robotic assisted laparoscopic myomectomy (using the Davinci system) and the procedure took about 5 hours to remove over 10 total fibroids and I was able to leave the hospital 2 hours after the surgery (as soon as I could use the bathroom and walk, slowly, but I could walk and was encouraged to). The main difference between the robotic assist vs manual surgery is that the cuts are much smaller so an overnight hospital stay is not required. That being said, depending on where the fibroids are located, you may or may not qualify for the robotic assist. Thankfully mine were all external. The robotic assist is becoming much more common now including the other radiosonic type procedures. As my fibroids were already really big, I was recommended to go the robotic assist route. In total, I talked to 2 different surgeons (they were friends and referred each other), one that specializes in the robotic assist and one that specializes in the manual. They both came to the same conclusion and of course, told me that they could only get what they could see and that it is very likely that I will need another procedure after I am done with family planning. I didn’t speak to them in detail about what the other procedure would be but they were in favor of “uterine freezing” procedures over removal.
Praying for a speedy recovery Patrice! You have always been a positive light in this world. Your pain will turn into more & more blessings for you. Thank you for sharing what you are going through and I know you have helped many people by sharing this.
I have had UFE done in 2015 by a Dr. NIGEL HACKING. Please ladies this man is a scamp.I was promised a period after procedure and to this day never regained my period and I am unable to have children.. I wanted to sue him but I now Hypertensive as a result of this so did not bother with a law suit..Biggest regret of my life and I did this based on my gynaecologist’s advice
Hello there is A group on Facebook that was created for women who’ve had the Acessa procedure and for people who are thinking about having the procedure. The name of the group is called Acessa patient support group. There is A lot of information on the chat and you can freely post and ask questions.
I am so, so sorry for all of this pain you have been enduring and for bravely sharing your story. I hope the next procedure is successful and healing!
My fibroids, too, have caused me distress, although I am lucky to have a type that does well with minimally invasive surgery. I had two procedures to remove submucosal fibroids that caused me suffering for years as they went undiagnosed. I went to my OB/GYN several times for stabbing abdominal pain but he never diagnosed me with fibroids. He also wrote me off when my IUD was displaced and did not mention fibroids as a possible cause (in fact he scolded me when I opted not to have a replacement IUD placed). When my IUD was removed, I was left with the heaviest bleeding and shedding of my uterine lining that was truly distressing. I was left sobbing in pain. I called my doctor in a panic believing there was something gravely wrong, because this could not be possibly be normal. My doctor again wrote this off as “clotting” due to the removal of the IUD. I knew in my gut this was different, and thankfully was able to make an appointment the next day with another OB/GYN who diagnosed me with fibroids and gave me a referral to a surgical specialist. The procedure was successful (even though I had to have it again the next year for another fibroid returning) and this physician is one of the few specialists in non-invasive treatments for fibroids. Although it appears you are comfortable with your next course of action, I would be happy to share the name of this physician if you would find a second opinion helpful. The health system can be unkind and women are often disbelieved (and especially black women). I am so very sorry for all that you have gone through. It is comforting to know that many can relate.
My mom had surgery when I was a teenager. The tumor was almost 3 lbs. It was scary but I am glad that is in past.
Wonderful to see you and your blog again! So sorry that you’ve affected by fibroids. I can truly relate. I had a successful myomectomy back in 2007. The doctor and staff at Johns Hopkins did a great job. That surgery changed my life. The recovery was painful, I threw out through out the oxycontin that was prescribed to me in addition to the ibuprofen, on the fourth day. It made me extremely loopy and that scared me. I know how people can become addicted to such a strong opiate and that was NOT going to be me. I wish you a successful procedure. I hope that one day invasive procedures will not be needed. Even more than this, I would like for doctors and scientists to find the root cause of fibroids especially as they seem to effect Black women the most.
Oh wow! my heart goes out to all of you. I too went to a similar situation when I got pregnant with my son. I knew I had fibroids accompanied by heavy and painful menses for years prior. And I was schedule to have surgery. However prior to going down that road, I had decided to go the natural route in changing my diet. I then added some herbal supplements, some of which I formulated myself that helps so much that I no longer had to have surgery. Menses pain and flow subsided, an completely forgotten all about my fibroids, until I become pregnant.
Everything was going smoothly until my first ultrasound and the doctor noticed that it had a few very small ones and one that seem to be a little big. Still I was not having any issues to the point where I was so nonchalant about it when my doctor said that they may start to grow. And if that happened to go see her. But I was still nonchalant up until I hit 13 weeks and I had one of the most unbelievable experience. Nothing worked, narcotics did not work and the only thing that could’ve given me some relief would’ve been a danger to the growing fetus so I went through the pain for what seemed like an eternity. But thank God eventually the pain went away and happy to say I have given birth to a healthy baby boy.
The fibroids are still there. My doctor have mentioned surgery. I am contemplating since I want to try to conceived again and hopefully have a healthy full term pregnancy prior to going down the route of surgery. But when I think of the pain I went through while pregnant, I feel torn.
God bless your heart! What a journey you hav. SO sorry for your losses. Congratulations though on your children and I’m happy to hear that you were able to conceive all the way to age 47. This gives me some hope in terms of my ability to have a second child as I started my family around the same age you started yours as well. Thank you for sharing. I’m sure that was rough, but I’m glad that you sound as though you’re in a better place now
I’ll assume you tried it and so you know how much that costs? I contacted him last night… $700 for two herbal treatments!! Wow ?. Didn’t expect this price.
Hello Afrobella,
I was just recently diagnosed with fibroids in June once I was able to visit the doctor, but had felt a difference in the left side of my pelvis than the right side one night in March as I laid down for bed and the left side was harder than my right.
Then I noticed every time I laid down, my left side protruded like a balloon ?. And it seemed that every now and then it either inflated and deflated and even moved around.
Since that was during the time COVID started shutting things down I wasn’t able to visit the doctor. So once I was, initially, I was told it was swollen lymph nodes, but that just didn’t seem right as I felt this pressure when touching my pelvis. And it still seemed to inflate/deflate and move around.
Well, to be sure, the director had me set up for an ultrasound where I was later told I had multiple fibroids. And as I educated myself about them deciding what treatment to endure I came to the conclusion that a myomectomy was the best solution since I’d like to have children some day.
In speaking with a surgeon he recommended I see another surgeon that best specialized in performing a lesser evasive kind of myomectomy than he does so later he set me up for an MRI so that surgeon could better see how to go about the procedure. Of whom I’m meeting tedae to discuss.
I’m still checking out options like Acessa and the Sonata system as seen here and other support/information forums. And had contacted Iya Hindi last night also as one of your responders mentioned. Discovered that that herbal treatment would cost me $700.
WHOO!
Dear Patrice: Thank you for sharing your story! I’ve suffered with heavy bleeding, horrible cramps and back pain because of fibroids for decades and it had become the norm for me. My OB tried to convince me that my only course of action was a hysterectomy, but I wasn’t ready to part with my “womanhood”. So when I found out about Dr. Slonim and fibroid embolization, I was excited! Since having my surgery, my cycles are shorter and lighter and my cramps are minimal. Based on my own experience, I suggest women consider UFE. My doctor has more info here for anyone interested: https://www.fibroidfree.com/
I was 28 in 2007 when diagnosed with a large fibroid (maybe 8cm) and had an abdominal myomectomy- the gold standard for removing and preserving fertility. The surgery went well and I don’t regret it. I never ended up trying to have a child. At about 40 the fibroid grew back (again about 8cm and uterus size of 12 week pregnancy)- which was expected. This time I had UFE, but the fibroid does not completely go away with that treatment, so I still have a bulge and the uterus is still large. So UFE was a waste of time. Luckily I did not find it painful but if you have a large fibroid it’s not going to disappear with UFE. I’m considering a hysterectomy now- I just turned 42 and I do not think kids are in my future; this will be my 3rd time treating these fibroids so I want a permanent solution. I was looking into Acessa as well, but I wonder if it will be similar to UFE and not really cause the fibroid to disappear. I think I’ll check out the Facebook group recommended above. Thanks.
Afrobella, let me know if you would like to chat and/or need a different doc for a second or third opinion. I’m in Florida now, but still go back to my doc every year in Chicago. It’s a much longer story than I would explain online.
Hi! I would like to hear more about your embolization. Experience if youre open to that.I’ve been trying to figure out my plan for my fibroids for two years… suffering in silence. I have three that are 8-9 cm