Guys, I’m no doctor and I write this post from my perspective as a patient trying to get to the bottom of my fibroids treatment.
I first learned about my fibroids when I was 8 weeks pregnant a few years back at age 43. I was at the OB for my prenatal visit to get my ultrasound. There was no heartbeat of the fetus. In the process of telling me this, the doctor asked if I knew I had a ton of fibroids.
My uterus is currently 4 times its regular size and covered with fibroids that continue to grow. Uterine fibroids are non-cancerous growths of the muscle tissue in the uterus. For me, they have caused uncontrollable bleeding that has caused anemia. Not to mention, a damper in my quality of life!
I’ve noticed there isn’t straightforward information online about real life cases so I’m writing this post to describe my journey with fibroids and the courses of action I am taking. Hopefully, it helps women navigate their fibroid diagnosis much more efficiently than I have!
Causes of Fibroids
The doctors couldn’t say whether the fibroids caused my miscarriage, but I feel like they did. You can read more about my miscarriage on this post that I wrote shortly after my pregnancy ended.
The causes of fibroids are unknown, although they are said to be associated with starting menstruation before the age of 11 and occur less often in women with more pregnancies.
Between 70 and 80 percent of women develop a fibroid tumor by the time they reach age 50. That’s a huge percentage of people. Uterine fibroid size can vary from less than an inch to larger than a grapefruit.
Symptoms of Uterine Fibroids
A few months after my miscarriage, I was sitting with my husband where we were enjoying a lunch date. It was a nice restaurant in town with cloth seats. I had just finished my “cycle.”
All of a sudden I felt a gush like I urinated! I excused myself and as I got up, I noticed a large stain of blood on the nice restaurant cushion. I entered the one-person bathroom and had to take my one piece, pants jumper off completely to rinse off.
With no sweater or anything to cover my waist, I put the wet jumper back on and walked out of the bathroom to find a woman who had been waiting for 10 minutes just outside the door.
Embarrassed, I avoided eye contact and walked by her to my table and quickly said to my husband, “pay the check and meet me outside” as I ran out before people noticed my wet pants.
The signs and symptoms of fibroids are related to the location, size, and the number of fibroids. Some symptoms of fibroids are:
- Heavy menstrual bleeding that can lead to anemia, or significant blood loss.
- Painful menstrual cramps.
- Pain in the back or lower abdomen.
- Problems with getting pregnant or having miscarriages.
- Feeling a lump in the lower abdomen.
Exploring Different Treatment Options for Uterine Fibroids
The 100% no fail treatment for fibroids is to remove your uterus. I list the treatment options at the end of this post for your reference.
I had so many fibroids that I was told by the GYN that the best case scenario if I didn’t want to lose my uterus, was to get a surgical myomectomy (they remove the fibroids one by one). Although they couldn’t remove them all without destroying my uterus, they would try to remove what they could to lessen the heavy bleeding symptoms. What the GYN didn’t tell me was that there were other options I should explore like uterine embolization by a radiologist which is a non-surgical way to treat fibroids.
So, I got the myomectomy surgery shortly after my restaurant incident but my symptoms did not improve. Over time, they got worse and my fibroids grew in size.
After dealing with heavy menstrual periods to the point of having to stay home during the week of my monthly cycle, my family care physician prescribed a birth control that allows the body to have only 1 period every 3 months. My blood test showed I was severely anemic from the large amount of blood loss every month which explained why I was feeling so crappy.
But for whatever reason, when I started the 3-month birth control, I bled and didn’t stop for 3 months! This is despite me stopping the medication and going back to my regular birth control. Ugh. I guess I needed a nudge to go see the GYN again.
This time I consulted with more doctors and received an MRI to see just how large the fibroids are now, and if non-surgical embolization is an option. The radiologist told me I am a great candidate for embolization to treat my fibroids. But luckily I requested a copy of the MRI CD because my husband (who is a surgeon) took it into the hospital where he operates and asked another radiologist to take a look at the MRI. The radiologist basically said, “hell no- with the size of these fibroids she needs her uterus removed!”
My GYN said, ok let’s take out the uterus. But she only offered me a robotic procedure through the stomach. When I asked her why I couldn’t remove it vaginally which I read was less invasive, she said, ” we don’t do vaginal removal. If you want that, we have to refer you out.”
I don’t want to trash talk doctors. I mean, my husband is one. But this fibroid mystery has taught me that NO ONE is looking out for my best interest as much as me. The health care system is so fragmented and each specialty will only discuss what they practice. Also, their advice can be skewed based on making money. Unfortunate, but true from my experience. It is imperative that you are your own advocate for your health. Do not assume just because someone is a doctor, they are right!
I now have an appointment with a new gynecologist to talk about the best way to remove my uterus and to confirm there are truly no other viable options. I am hoping he takes a holistic approach for treatment, unlike the other doctors I have consulted. And if I get the hysterectomy, do I leave the cervix or no? Do I want it done vaginally or through the stomach? Laparoscopic or robotic? I hope he is the right one to give me the best advice for my fibroids treatment!
I’d love to touch base with you with new posts and give you access to my new freebie resource library where I’m adding new goodies to each day.
Fibroid Treatment Options
Treatment with medicine (people with a small number and size of fibroids may be ok with just this)
- Birth control pills can control menstrual cycles.
- Injections of hormones can control the menstrual cycles.
- Medications can stop heavy bleeding during the menstrual cycle (I took a 5-day course to stop the 3 month bleeding).
- Hormone-containing intrauterine devices (IUDs) are can lessen menstrual bleeding.
- Lupron (I’m looking into this medication)
Lupron is commonly prescribed for women undergoing fibroid treatment particularly prior to surgery. The medication leads to a reduction in estrogen and effectively but temporarily shrinks the fibroids. This helps to resolve anemia and allows for a minimally invasive approach by shrinking the size of the fibroids. It is only a temporary treatment with benefits that last a few weeks.
Nonsurgical treatment (effective depends on size, location, and number of fibroids)
- Uterine fibroid embolization (UFE) uses tiny particles that are injected into the blood vessels that lead to the uterus. The particles block the flow of blood to the fibroid, causing it to shrink and die. This minimally invasive procedure can be performed by an interventional radiologist on an outpatient basis. It doesn’t require surgery and offers relief of symptoms with fewer risks, less pain, and a faster recovery compared to surgical procedures.
- Magnetic resonance imaging-guided (MRI) ultrasound procedure uses ultrasound waves to destroy fibroids. Waves are directed at the fibroids through the skin with the help of magnetic resonance imaging.
- Endometrial ablation destroys the lining of the uterus. This procedure is best for small fibroids that are less than 3 centimeters in diameter.
Surgical Treatment
- Hysterectomy is the surgical removal of the uterus. Because this surgery removes the fibroids along with the uterus, there is no chance of becoming pregnant after undergoing a hysterectomy.
- Myomectomy is a surgical option to remove all types of fibroids. There are three approaches to performing a myomectomy: hysteroscopy, laparotomy, and laparoscopy.
I hope this post has been helpful to you. If you are dealing with fibroids, know that you are not alone! It is a common issue we face as women. I will keep you posted on the progress of my treatment.
I had the endometrial ablation done, after months of regular bleeding. Made such an amazing difference in my quality of life!!
Lucky! I wish that would work for me too.
I experienced years of contradictory advice from a number of doctors (it amazes me how many doctors will only recommend the option they personally specialize in, and most of them just want to rip your uterus out). Also they were very unwilling to discuss honestly what happens post hysterectomy, especially with regard to sexual health. I finally self-referred to Stanford Fibroid Center where they spent some time explaining all the options, pros and cons. My main fibroid was grapefruit-sized, plus I had a few smaller ones. I chose to undergo an embolization which involved an overnight stay in hospital plus two weeks off work. I felt the difference immediately. My belly went back to normal size and my constant pain was relieved. I was warned the fibroids would keep growing again until menopause. 3 years later they have grown a little and symptoms are there, but very manageable and nowhere near as bad as before. I’m now 51 so expect to be hitting the big M soon. Good luck with your procedure.
Hi Jill, I found it amazing too how doctors are so specialized and don’t have holistic approaches. I am glad you got the embolization – I was seriously considering that as well. I just didn’t want to deal with this again later and the chances of them coming back were high. I am post surgery and recovering at home now – the laparoscopic para-hysterectomy was the right decision for me. Thanks for sharing your experience and keep in touch!
I am so happy to read your article and also knowing that i am not alone to go through difficulties that i am facing due to fibroids. I could very much relate your experiences to mine, particularly about heavy bleeding and stains on chairs.
Since last five years, i have been meeting doctors in India and Bangkok. In one place, they say – i have very large uterus therefore need to operate immediately while other suggest not to operatise as i am approaching near to MP. I also waited for the last five years patiently hoping that MP would come soon and all my problems will be solved. But now i am around 51 – and experiencing rapid weight increase and quick interval urination. This is bothering me therefore thinking of taking out my Uterus- as some people say -this is better. I will need to make in my next visit to a doctor in a week’s time. Still, wondering whether my current thinking would be okay or not? It would be good to hear what option did Jennifer take? Once again thanks for creating this platform for sharing experiences.
Hi Bina, I had a partial hysterectomy (kept cervix and ovaries but removed uterus and tubes).I feel a ton better. You should consider it too. Every practitioner has their own interests in mind when treating you. It is important to see a specialist who is not biased. Let me know how things go, and good luck!
I have just been diagnosed with severe anemia due to the fibroids I never knew I had. I am in So much pain daily and cannot wait to get them out of my body. Thank you for so openly discussing this, your story and mine are almost exact! I am only 39 and have no desire to wait 10 years for menopause. Do you think that a partial removal was the best decision? It’s there anything you would have done differently?
SO sorry you are going through this too. I think I should have seen more than one doctor to assess treatment options at least a year earlier. I would have gotten my partial hysterectomy earlier if I had been better informed. Good luck to you.
I have a question. If the Aygestin was working for you, why did you choose to have surgery?
Hi Sarah, the Aygestin is not healthy to take long term is what they told me. Hope this helps!
You mentioned about doctors, but do you think it’s possible that one could be on it for long term, maybe stop and start it? Which procedure did you go with? And are pleased with it? I am glad you put that information out there, like you said there isn’t a lot on the internet. Thank you
there are synthetic ingredients in the medication so i don’t know that starting and stopping is recommended. I had the hysterectomy laparoscopic but kept my cervixx. Very happy with the decision – wish i did it earlier. Make sure you go to a great surgeon – their qualifications vary.
How was the recovery? Did you also consider UFE approach? Did you have submucosal fibroids? Thank you for your understanding.
I have uterine fibroids I was diagnosed with having them two years ago and was put on tranexamic to help reduce the bleeding however I would bleed for more than 5 days so it only reduced bleeding for a limited of days. I am now seeing a new doctor who put me on norethindrone and to see how it goes within 4 months if not l will have to get a hysterectomy. I am 48 and don’t plan on having anymore children but I’m not sure if I should just get the hysterectomy done. I bleed so heavily when on my period I have to wear two pads at night and get up to change otherwise I go thru my pajamas and underwear. I have anemia also because of the heavy bleeding. I am debating the hysterectomy and wonder if I should just get the hysterectomy and be done with dealing with these fibroids? Please help with any advice.
Hi Manuela! Your comment brings me back to exactly how I felt when I was trying to cope with my fibroids besides getting a hysterectomy. It’s been over a year since I got my hysterectomy. I wish I did it 2 years prior. I was afraid to mess with removing body parts – it just didnt feel right? But we just dont need our uterus after we are done having kids, and it’s not worth all the bleeding and health issues dealing with fibroids. I am not a doctor, but I recommend getting a partial hysterectomy. Just make sure to use a GOOD doctor and research them – they are different in qualifications and it is hard to tell the good from the bad.