The More You Know… About Fibroids

 My most recent posts have been about fibroids  and this one is obviously no different. I truly feel like this is an issue I want to gain more visibility, not just in a woman’s education but in the general public. The days where ‘we don’t talk about these things’ have done enough damage and we do a major disservice to all people without at least making the basics known.

If you look at women’s health historically, it’s appalling and abysmal and, sadly, education and awareness is still far short of where it needs to be. You still see pages where men ‘hilariously’ get information on periods and pregnancy wrong, yet it’s not so funny when you realize that these very wrong assumptions interfere with not just a woman’s professional career but also with her health and, more seriously, her life. Vague information citing fibroids as common very often gives people (not just men, but also women who don’t experience symptomatic fibroids) the impression that they are not serious. It isn’t given the seriousness of other abdominal surgeries when the risks and recovery is very much the same.

In previous blog topics, I’ve explained the details of my own treatment plan  as well as my initial journey of discovery and the anxiety that came with the wait to learn more, along with how Google searches with any updated information or treatment requires a lot of weeding through very vague and outdated information, concerning both medical and plain-language sources alike. Between those two posts, you’ll find more of my journey since as well but I’ll leave you with those two to start. What I’ve really contemplated is what it will take to start cataloguing what I’ve learned into a resource that becomes a prioritized search result to give the many women of all ages and health concerns a definitive resource for fibroids and, ideally, reproductive system issues in general. I also want to offer some way of introducing this information to men and even women still steered clear of sensitive topics in a way that lets them explore the basics of what is myth and fact and be able to choose how many more details they want to explore. You just can’t force people to be comfortable with all information but I think that’s why creating real awareness isn’t about info dumping, but mostly dispelling harmful myths.

I’d like to get into treatments now, but I admit I still have a lot of research to make this more thorough and comprehensive so I’m going to touch on what I do know as well as some of the risks. If you would like to add anything that I miss along the way, something you consider important or even that I’ve misunderstood it (or just didn’t present updated info), please speak up! Your comments in helping me compile data will be invaluable and I will definitely be giving special thanks to valuable contributions.

I want you to understand before we start that diagnosis of fibroids is extremely common. A great deal of women will never have issues if they are discovered but you may wish for them to be checked via ultrasound every so many years just to check on quantity or size. Early symptoms are often a change in menstruation like frequency or heaviness. Again, don’t assume this means things are about to go wrong. Some women (girls in this case) know they have fibroid issues from the time they start their first period because of the heaviness or cramping. Keep in mind that many women can get pregnant normally and fibroids do not mean fertility issues are imminent. Most are benign; cancer is very rare. These things need to be said because this is not a diagnosis where you need to immediately panic. Again, fibroids are common. You do not need to be alarmed unless symptoms are limiting your quality of life, but I’m taking this opportunity to say you should definitely advocate for the difficulties your period presents in your life. Insist on scans with your doctor and speak up in work and life situations where there are veiled threats of punishment for needing to rest or take time off. Know your family medical history; in my case, my maternal line is riddled with bad fibroid issues so that can be a possibility your doctors should always be aware of, like an allergy or other chronic condition. 

Now, onto treatment. They can be hormonal, non-invasive and surgical. 

Hormonal treatments can sometimes increase side effects like hot flashes and I have met women allergic to synthetic hormones so take note in whatever kind of birth control or hormone therapy you choose that you should observe and report side effects. The hormonal birth control options include IUDs, shots, pills and so on. On the upside, they can decrease flow and pain and duration if not stop them altogether and are not permanent. You can get pregnant still and will have to stop if you do. IUD complications can include slipping of transplant, pain at transplant site, poor distribution of the hormones, allergies to the hormones or implant itself. It needs to be installed and removed only by a doctor and can cause long-term complications to leave it in longer than it is effective. Pills require you to take them at the same time every day to be most effective. If you opt for a placebo week, those pills do not have hormones (they are sugar pills with no medicine at all and purely to keep you in the habit); if not, you skip the placebo week and you increase the chance of not menstruating but keeping the hormones that can reduce the size of your fibroids more effectively. Each birth control method has risks that should be considered. The ‘non-birth-control’ home therapy, GnRhAs, include the one or three month shot Lupron and Myfembree. You can find detailed information for their applications and side effects on their websites. Keep in mind that Lupron has some VERY mixed reviews. Always look up customer review sites to get an accurate feel of the pros and cons, keeping in mind that people can be extremely biased from their experience so get a full range of positive and negative reviews for anything you consider.

The next choice in the non-invasive treatments, which are obviously most appealing to those who are squeamish about altering hormone levels (or, again, are allergic) but some of these were actually surprising as I didn’t know they were possible. I’ll file naturopathy and holistic treatments here since this includes an often strict regiment of diet and exercise with the goal of reducing the amount of estrogen your body makes. A great deal of those with symptomatic fibroids are estrogen-abundant. 

A little anatomical fact here, before I continue with non-invasive, but men and women both need to produce hormones; women are usually estrogen-dominant while men are testosterone-dominant but all humans produce both. For men, estrogen boosts like estradiol can balance testosterone overproduction. For women, the safer introduction is often progesterone. You have a lot of hormones in your body; ghrelin determines hunger, cortisol determines stress, dopamine is your reward center, serotonin is the happiness hormone and melatonin induces sleep. All of these and more are what our bodies can produce naturally but while some can be directly supplemented, sometimes it’s safer or more effective to stimulate a ‘sister’ hormone that works with another to encourage production. For example, while food can suppress the hunger hormone, food (or more specifically caloric) intake could be the problem so there are often supplements that can safely suppress hunger to create a feeling of fullness. Longer fasts may be difficult with ghrelin triggers but those triggers will lessen the longer you fast.

That being said, I have a history with great diet and exercise discipline but despite this, my fibroid situation did not benefit at all from it and I’m no longer at a point where some of these disciplines are even safe. Other organs are being compromised and ‘possibly’ shrinking them was not a risk I could take. I currently don’t have much of an appetite and exercise makes me nauseous to the dangerous extent of feeling I might lose consciousness. So please keep in mind that holistic and naturopathic methods are not a catch-all for safe and more effective. Like fasting, they can be dangerous for certain health conditions and do require adjusting and sometimes regular blood testing to make sure you’re not creating an imbalance elsewhere. If your fibroids are debilitating, I wouldn’t advise this being your primary choice. However, if you are pre-menopausal or still want to have kids, I definitely recommend a healthier lifestyle after you can reduce them, either by surgery or some other method, if you want to attempt to keep them from coming back.

One of the surprising methods I’ve seen for fibroid treatment is actually done during an MRI and using ultrasound to heat and destroy small fibroids. I don’t know the conditions involved and definitely wish to research this since it seems like a great option if you’re eligible. It may have limited coverage with insurance and be costly besides, which is why it’s not well-known but I will definitely post more once I know.

Although I considered calling these next two ‘non-invasive’ they are actually minimally invasive. Word usage is crucial in the presentation of information so I do labor to not embellish or be too vague. UFE, or uterine fibroid embolization is done by locating the qualifying fibroids and injecting them directly through the skin (this may have a more extensive application for fibroids in trickier locations; noting to look into this more). The injection directly dissolves the fibroid. Again, I do not know offhand the risks but I also haven’t seen anyone reporting bad side effects. Another minimally invasive method is ablation, which I’ve talked about being done alongside my surgery. As a refresher here, it is where your uterine lining or endometrium is burned off. If your fibroids are inside the uterus, (again, I don’t know this for certain) I believe they remove them through the vagina via laparoscopy and then ablate the uterus. Tomorrow I am getting an endometrial biopsy to make sure the ablation will be possible. I am told this is not an option if you have endometriosis (uterine lining that grows outside of your uterus) since it can agitate the condition being unable to effectively treat all of the endometrial tissue from the inside.

Last but certainly not least, surgical options. This may be quite lengthy since these were the options I explored. Although I have no interest in protecting my own fertility, I do have some information regarding ones that do not pose a high risk to that and in some cases, may make some women able to finally achieve a pregnancy that was not happening beforehand. 

The main options here are open abdominal, vaginal, laparoscopic and robotic (also called DaVinci). 

Open abdominal is the most common and is used for large and/or abundant fibroids but it’s also important to point out that some surgeons, often older ones, just were not trained in any other method. This may be a reason to seek a specialist that does. Open abdominal requires a hospital stay and can take longer to heal with larger scars. This is also the only option of cancer is found; a radical hysterectomy is performed then (by an oncologist-gynecological surgeon specifically) removing all parts of the reproductive system and even some lymph nodes, creating a vaginal cuff with cervix removal. And for those worried, none of these surgeries come with reduced libido or sexual pain. Most women report the opposite; an end to conditions that interfered with sexual libido or enjoyment. I would say ‘all’, but there are no definitives in medicine and risks always exist. In this case, women are already experiencing sexual dysfunction and this discontinues a lifetime of struggles with it.

I do apologize for the addition of cancer in the dialogue; do not worry that this will be your case. Your doctor may bring this up to assure you that a game plan is in place when the likelihood exists but this is to assure you they are not unprepared to safely address this without a huge margin of error. Please consider this a sign that you have a great doctor and not that you’re about to get terrible news. I may have told you this before but likelihood of eliminating stage one or two cancer on the first attempt with no reappearance in the five years after is also very high even as the risk of it being cancer is also extremely rare. Do not worry about being the unfortunate statistic. It’s far more tragic to feed anxiety over something that may never happen. Cross that bridge when you come to it.

Although I have limited knowledge of the vaginal option, I understand that it is done in the same way an ablation is; dilation of the cervix to remove the fibroids inside the uterus. While this is technically minimally invasive, it does involve surgical removal so it should be mentioned as a surgical/ invasive option as well. 

Laparoscopic is the first option of more modern medicine. This involves use of a camera and a sort of ‘mini-surgeon toolbox’ inserted through at least three small incisions. One to three optional incisions are determined by location of fibroids and any additional procedures done together. The basic two are just above the navel and along the bikini line. The optional cuts (in my case the largest) will be on the left or right of the abdomen. In my case, the third and last cut will be on my left side; despite the problem being on the right, the best angle to approach is something your surgeon determines. I believe the procedure takes 2-4 hours and is outpatient; they release you once you’re fully awake and are able to make a bowel movement. Pre-op involves blood test panels, paperwork, prep for the surgery. I am required to not eat or drink after midnight the day before; very important as they will not operate if you have a risk of asphyxiating during surgery because you do not have an empty stomach and it comes up during. In the early days of surgery, it was a super high fatality risk and they don’t play around with it now.

Robotic is also an option though I’m also not sure on the specifics (another thing I will remedy). I know it involves similar procedure and results to laparoscopic but I don’t know the details on entry points or unique risks. My surgeon is trained in robotic but it’s possible it’s only available with certain coverage or conditions or availability of this technology in the hospital it’s done in. I haven’t read that it is vastly different than laparoscopic; it is also outpatient with a slightly lower recovery window from abdominal.

As far as the types of surgical removal options, I’ll give you a crash course on those. I did mention many of these terms with my own treatment plan but this will cover the larger range. I’ll sort of bullet point these in their own short paragraphs. 

Myomectomy- fibroid/fibroma removal. This term exclusively refers to fibroid removal only. This is a good option for women with fertility issues related to the fibroid problem or wanting to get pregnant. This can be done via all four surgical options, depending on size, location and effectiveness.

Salpingectomy- fallopian tube removal. This is done to eliminate risk of fibroid regrowth here but is also done if the ovary or tubes are compromised. You can choose to only have one removed or opt for tubal ligation to stop egg related. Ovaries will still produce hormones.

Oophorectomy- ovary removal. Eliminates risk of ovarian cancer and fibroid or cyst regrowth; can be unilateral (one) or bilateral (both) removal. Will cause instant menopause if both are removed; one viable ovary will continue normal hormone production, essentially picking up the slack. In conjunction with fallopian tube removal, it will be referred to as salpingo-oophorectomy.

Hysterectomy- uterus removal; with degrees. A partial hysterectomy only removes the uterus, keeping the ovaries. Total involves removal of uterus and ovaries. I think cervix too is an option with this assignation. Radical definitely includes cervix and lymph nodes, only done for cancer.

Which leads me to another gap in my knowledge; I don’t know what removal of the cervix is called but this is sometimes done alone for cervical cancer risks and cervical pain issues. So if anything, this blog post has certainly enlightened me to some areas to explore.

I hope this has given whoever needs it more agency in their decisions. Often you will have a doctor that refuses certain treatment options. You can ask them why but they can refuse to tell you; in either case, don’t skimp on finding a doctor receptive to your case and choices. Don’t be inflexible about what you want but don’t get bullied into doing something that doesn’t feel right either. I can gather information but I don’t specialize in this area and I don’t have their insight. That’s why I say it is important to ask why they want to or don’t want to pursue an option. If they won’t share why or give a reasonable answer, you are not obligated to simply trust their treatment plan. That insight is what you are lacking and if they are not freely giving theirs or holding back, it can cause anxiety and a lack of confidence in the decision. Don’t accept permanent choices or even weak choices that require you to take risks that may not help you at all. Be on the same page!

This is why I am so passionate about sharing info and helping women advocate for their own choices. Now more than ever in modern times, women are having choices severely diminished and being infantilized as unable to trust our own choices and decisions. The struggle to be treated as fully realized human beings is still a reality and by advocating for our own choices, we are creating accurate statistics that will make knowledge of women’s health more effective and known. If you can’t be a vocal advocate for others, speak with your own body. Let doctors know that it’s not okay to box you in or operate off of severely outdated information. A gynecologist that admits they can’t perform a surgery you want may still be a keeper. Their honesty and genuine concern for you are very valuable so remember if they can’t be your surgeon, they can still be a great doctor going forward. Even if you are angry or feel cheated, keep your conversation professional. If you can’t express your distaste with coherency because you are emotionally hurt by their attitude, take some time to figure the words to address their ineffectiveness in a way that can make them more useful in the future. I consider access to any doctor an opportunity to censure their performance where it is lacking in the hope someone else might not be subjected to it as I was.

I’m not sure how much else I’ll bring into my blog post on the subject. I’m hoping it can lead to some feedback or discussion, even if you wish to discuss details privately.  For women going through this, I highly recommend the Uterine Fibroid Support Group on FaceBook. You can post and contribute anonymously if you wish, but there’s also an unspoken rule to protect the anonymity and wishes of every woman sharing. It has been a wholly priceless tool in directing me towards relief and answers.

I’m thinking I may do another post on post-op care, either through my own experience or just comprehensively by side effects through recovery.

I haven’t yet announced any part of this journey on social media, just to some family, friends and loved ones. I plan on doing so prior to surgery, if only because I don’t want to field concerns and get flooded with questions (often the same ones over and over, through private message or comments no one reads to see it was answered). I do want to be public about it because I feel like silence is part of the problem. While I’m sensitive to the process now, I do want to create awareness once I have more experience and answers. I don’t want this to be the defining moment of my life; it has certainly been debilitating but I want it to be something I can put behind me to focus on my creative pursuits again. I don’t want it to be a forgotten page so I do wish to find ways to create awareness (and if you know me, it won’t be conventional; clearly a trait I am proud of) and make information more available to those who need it.

Health scares and diagnoses are an opportunity to improve your own life by understanding your limitations and gaining perspective. They are useless when wallowed in or used to create excuses to not grow as a human being. I see my own experiences as a way to help others gain knowledge that will help them avoid prolonged misery and anxiety. I often contribute to ADHD discussions, always framing my advice as possibilities and acknowledging we are not all the same and shouldn’t operate as such. I often call out dangerous presumptions that people link to ADHD but are often personality traits and not markers for the condition at all. This doesn’t always make me friends but I’d rather help people navigate better than withhold and exacerbate harm.

I hope this blog is a flagstone for awareness, the beginning of a project that can help more people expand their knowledge of something that affects so many women, and can reach many more who truly need the intervention and advocacy. Just a basis for understanding a woman’s choices are better made with concern for her own life goals, not a projection of everyone’s expectations of her.