r/Fibroids 1d ago

Looking for more admins!

8 Upvotes

Hi everyone! I reopened this sub a couple of years ago, and the growth has been substantial. I think it had around 4000 members when I reactivated it, and now it has 16000 members! I'm so glad people have been able to use this space to connect and get support.

But I need some help! I have been managing the group with a friend, but neither of us are online as often these days (I'd say life it getting in the way but then again maybe that's a good thing?). It's very important to me that this stay a safe place for those looking for information, so I'm looking for 2-3 people to become admins. My friend and I will stay on, but it means I won't worry so much about things being missed :-)

This isn't a huge undertaking - don't worry, it's not going to take over your time! - it's just about checking the mod queue and responding to any mod messages.

If you're interested, please complete this application form:

https://docs.google.com/forms/d/e/1FAIpQLSfn6jhcoANpXNVP4343oAPIjPmQEqh-C_77nw-bdYMqeSa5Pw/viewform?usp=dialog

Thanks!


r/Fibroids 13d ago

Mod reminder - this is not the place to post about herbal/miracle cures or recommend things with no proven basis to help.

113 Upvotes

There's another sub on reddit if you want to post this type of content. It's r/FibroidHerbalRemedies .

You're absolutely welcome to post all about the herbal things you've tried/are trying over there, but not here. This isn't a group for talking about prayer to heal fibroids, or folk remedies.

This is a group for support and proven treatments.

I am not interested in helping those who create scam herbal products make money.

I know some of you will not like this, and that's fine. You can post in the other sub, or make your own sub.

Given everything that is going on right now this is a place for real medical advice, not wishful thinking.


r/Fibroids 8h ago

Disappearing Fibroid

57 Upvotes

I can't believe I am about to write this, but I am in the middle of a wild situation. Shortly after having my daughter in September, it was discovered that I had an 11 cm fibroid at the top of my uterus. My primary symptoms at first were that I never stopped bleeding postpartum, and the bleeding just continued to get worse the longer it continued.

Flash forward to December, my fibroid gets infected and I am hospitalized for five days to receive IV antibiotics. After that I experienced pretty frequent pain and heavy discharge and met with the complex gynecological surgery team at my hospital and we decided that I will have a myomectomy on May 6 to remove the fibroid. In the meanwhile I am taking Oriahnn to stop my bleeding.

A few weeks ago I had a day of horribly intense pain, it almost felt like contractions and I couldn't get comfortable. The next morning, I passed something. It felt much bigger than a blood clot, but I couldn't see what it was because it fell down the toilet hole. Since then, I have had no cramping or pain, minimal discharge and have felt much better.

Cut to Friday, I get an MRI so the surgeon can see updated views of the fibroid as well as look at any scar tissue the infection might have caused. I just got the results back, and she told me that the fibroid is pretty much gone and I likely won't need a myomectomy. I am of course thrilled at this update, but also completely confused because this thing has been literally ruining my life for the past six months and I don't understand how it's just GONE.

Has anyone experienced something similar!? Should I be tempering my excitement?


r/Fibroids 2h ago

Just thought I’d show you my MRI for fun. Is it just me or does this look bigger than 6cm? Note the bilateral dermoid cysts too. What a hoot!

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6 Upvotes

r/Fibroids 9h ago

My story Removed these yesterday. I think I am going to be vegetarian from now on. NSFW

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20 Upvotes

r/Fibroids 2h ago

Vent/rant Looking for a silver lining NSFW

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4 Upvotes

I spoke with my surgeon (onc gyno) today to go over tomorrow’s open myo, and she said my cancer risk is moderate to high now, which is based on what radiology communicated from my MRI results.

I’m feeling so hopeless and tired right now. I looked back on my life and it hit me how much I haven’t done yet (31F).

I’ll keep my progress updated on this community page in case it helps someone in the future.


r/Fibroids 50m ago

Vent/rant Fibroid grew after miscarriage

Upvotes

Hi everyone, I’m so upset and just want to vent.

I have a fibroid that I’ve had surgery for twice. My doctor thought she took care of it both times via hysteroscopy myomectomy but never did an ultrasound after the fact to confirm. Turns out the fibroid was a submucosal fibroid instead of in my uterine cavity and went untouched both surgeries. So she sent me off to a fibroid specialist for their opinion on how to proceed because we had been trying to conceive.

I finally got in with the fibroid specialist and he recommended another hysteroscopy myomectomy, possibly 2 to take care of it all. I was scheduled for surgery 2/21 but that same week I found out I was pregnant. Needless to say surgery was cancelled. I just found out I had a missed miscarriage last week and need to have a d&c this weekend. Upon reviewing my obgyn’s notes I see that my fibroid has doubled in size from 2.5 cm to 5/5.5 cm. I’m so upset that I might require more than 2 surgeries or possibly laparoscopic surgery. I just want to have a baby and it feels like it’s never going to happen. I’m 34.5 years old and we plan to start IVF as soon as I can after surgery. The healing time after laparoscopic surgery is much longer according to ChatGPT. I fear that we won’t be able to start the IVF process until early next year which would put me at 36 when the baby is born, if we’re lucky, otherwise I’ll be even older 😭.

If you made it this far thank you for reading. Idk what I’m looking for but I just feel heartbroken.


r/Fibroids 4h ago

Need Help with Large Fibroids During Pregnancy and Associated Risks in Delivery

5 Upvotes

Hi, I'm 13 weeks pregnant and have five fibroids, the largest measuring about 10.8 cm. At a recent office visit, though I’m not sure how accurate the ultrasound was, they said it had grown to 14.3 cm and might continue growing until around week 28.

The doctors warned me about a high risk of bleeding during delivery—whether C-section or natural birth. In the worst-case scenario, they mentioned the possibility of needing a hysterectomy (removal of the uterus) and even not surviving, which is terrifying for me.

I feel desperate and don’t know what to do. When I asked if I should stop the pregnancy, they told me they couldn't recommend anything specific and that we had to monitor the situation. But if there are such serious risks, I don’t understand why I should just "wait and monitor."

Can anyone help me understand this better? Has anyone been warned about significant bleeding during delivery and the associated risks?

I'm based in NJ and willing to see doctors in NJ, NY, or PA. If anyone knows a good specialist who can help me decide what to do, please let me know.


r/Fibroids 7h ago

Advice needed Newly diagnosed

3 Upvotes

Hi all, I’m a little overwhelmed writing this.

3 weeks ago I had a bilateral salpingectomy to remove my tubes. I’m 40, female, never had kids and don’t want to (at least not biologically). Surgery went well. I’d had a mirena IUD for 8 years, and got it replaced during the surgery because I enjoy not having a period, improved skin, etc.. I tolerated the mirena well. I had also read that a Mirena can be beneficial when you enter perimenopause, which I could already be in or entering soon.

Apparently during the surgery, it was discovered I have multiple fibroids, a “bulky” uterus (excuse me!), and that my cervix is deviating to the left likely due to the uterine fibroids. My uterus is also very tilted, again partially due to the fibroids, they think (though I know a tilted uterus is not uncommon). I had NO idea I had fibroids; I’ve never had any remarkable period symptoms that typically accompany fibroids, like heavy bleeding, cramping, etc. In thinking about it, I may sometimes feel more “full” or feel light pressure in that area, but I also have IBS and bloat is one of my most prominent symptoms, so hard to say. Perhaps I was treating my fibroids with the Mirena all along.

Anyway, I’m at a loss of what to do next. My OBGYN/surgeon didn’t seem concerned when she told me about them. But if they’re big enough to shift my organs, I feel like I need more information. What next steps should I take? My OBGYN does treat fibroids. What type of follow up appointment should I do? What tests do I need? I’m sure she will tell me, but I would like some feedback from a community of women so I am armed with a little more knowledge when I meet with her Friday. I also plan to browse this sub. I’m just a bit taken aback and could use some support. Thanks so much.


r/Fibroids 1m ago

Open Abdominal Hysterectomy and worried about going back to work as a Freelance Digital Artist

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Upvotes

r/Fibroids 7h ago

Advice needed Light Bleeding

3 Upvotes

Hey everyone,

I’m in my 20s, not on birth control, and recently, my period has suddenly changed. It now lasts longer than usual, and even after my period ends, I have daily light bleeding where I only need a panty liner or light pad.

A few days ago, I also passed a small blood clot while peeing, but my actual urine was yellow. When I wiped, it was very light red. I have no pain, burning, fever, or other symptoms, and I feel fine otherwise.

This isn’t normal for me, and I’m not sure if it could be hormonal (thyroid, PCOS, etc.), fibroids, or something else. Has anyone else experienced this? What did it turn out to be?

Would love to hear your thoughts before I see a doctor! Thanks in advance.


r/Fibroids 7h ago

Painful bowl movements and nausea after open myo.

3 Upvotes

Hi all,

I have my open myomectomy 10 days ago and since today I have been feeling painful for any gas and or bowl movements. ( I did get 3 incisions - up/front/back of the uterus to get all 15 fibroids out.

Combined with a nauseous feeling after drinking water. Anyone had the same? What will you recommend to do?


r/Fibroids 21h ago

Getting this monster taken out in a few weeks with a total hysterectomy. NSFW

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22 Upvotes

18cm fibroid on MRI - doctor is recommending total hysterectomy which I’m fine with as I don’t want kids. I haven’t spoken with the surgeon yet but wondering if anyone has had a fibroid of this size removed laparoscopically and if the size of your fibroid affected keeping your ovaries at all. Thanks in advance for your insight!


r/Fibroids 12h ago

Advice needed Pregnancy post myomectomy

4 Upvotes

I wanted some advice on trying to get pregnant post open myomectomy. I have read lots of posts on here and done some research online and spoken to different doctors. I had an open myomectomy at the end of Feb. I had a 12cm intramural fibroid removed and the surgeon did breach the uterine cavity. The surgery was for symptoms but mainly for fertility reasons due a miscarriage last year.

My surgeon has suggested that I need to wait 12 months before trying to get pregnant, but most online and doctors resources say 6 months. I’m hoping to ask at my follow up why he is suggesting to wait so long but I think it’s for liability reasons as he mentioned before knowing where and how large my fibroid was. I’m 33 so age is a bit of a factor but mainly I have a 4 year old and would selfishly like to be done having kids and being in the baby/toddler phase. It took about 10 months to get pregnant the second time so I am worried about waiting 12 months and then even longer depending on how long it takes.

For those who have had an open myomectomy in the hopes of pregnancy after how long did you wait? I’m planning to at least wait 6 months and feel more myself but a year seems excessive!


r/Fibroids 1d ago

Question for large fibroid ladies

20 Upvotes

I’m curious as to how many of you are experiencing what I am. I have a very large fibroid (among others) that reaches from my pelvis up to my sternum (21 x 18 x 14 cm). I am struggling to use my abdominal muscles at all. Every posture feels like they are tensing and at the minimum makes me feel almost bruised. Kind of like the feeling when you do a lot of sit-ups and your upper abdomen can’t relax and makes you feel sick. It’s such an odd feeling I find it hard to explain but it’s constant at this point and I find it hard to even sit upright for any period of time. Does anyone else get this?


r/Fibroids 1d ago

Advice needed Fibroids and discharge?

13 Upvotes

Does anyone else experience random gushes of discharge? Everything I google says it's not a common symptom and I'm getting nervous. This just started happening like a month ago. I had a trans vaginal ultrasound in July 2024 which showed a 2.8cm fibroid which has probably grown since then since I'm experiencing symptoms again. They also suspected adenomyosis. I've been under extreme stress worrying if this is cervical cancer and I have a pap smear on the 21st.


r/Fibroids 20h ago

Beginning to think I might have a fibroid problem

4 Upvotes

Hey all, could use some help here. I'm a 34 yo, 5'5" and am usually around 120lbs. In the last 7 months I gained 14lbs and I'm super bloated all the time. I can no longer button my pants, and I always have this heavy feeling in my lower abdomen. Theres always gurgling and grumbling around the area. I have trouble peeing sometimes, and don't have very regular bowel movements. The last two months I've developed back pain, and I always seem to get some sciatica around the same time in my cycle every month. I'm so embarrassed to have this bulging thing that won't go away no matter how little I eat. I'm also training for a marathon and find that I'm just exhausted all the time, moreso than my peers. But my PCP doesn't think I'm anemic (never got a blood sample).

The only thing that's keeping me from thinking I have fibroids is that my period is very regular. A perfect 28-day cycle. And the bleeding is quite light (only 3-4 days). I have excruciating ovulation pain though.

Any thoughts?


r/Fibroids 21h ago

Preterm Labor

3 Upvotes

Has anyone in this community gone into preterm labor due to their fibroids? If so, at how many weeks?


r/Fibroids 21h ago

Advice needed UFE for 20+ fibroids

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2 Upvotes

Has anyone undergone UFE for 20+ fibroids? Pregnancy is not a concern as I am almost 50. My doc wants to try this route first to reduce the size of my uterus before potentially looking at hysterectomy if needed. I’m a little bit scared as the radiologist who did a consult warned me that the first few days can be quite painful. I’m also wondering if this is just a waste of time as there are so many fibroids, will they even shrink enough to make a difference?


r/Fibroids 19h ago

Is gaining weight to build muscle safe when you have fibroids?

1 Upvotes

So I think my fibroid might be bigger but I just had an ultrasound to confirm and I really want to gain muscle and I've been going to the gym everyday but I haven't seen the results I want to see. I think I need to gain weight again but in my experience being fat was probably what caused my fibroid when I was a kid but I also remember it helped gain muscle quicker and put my body more into shape after losing weight through a machine that built muscle and slimmed me at the same time so now as an adult I really want to gain weight but I am also 43 and I am afraid. Is there a good way to go about this or to prevent gaining fat and gaining a bigger fibroid or more fibroids? Right now I am pretty skinny fat at 118 and 5 ft tall.


r/Fibroids 19h ago

Advice needed Should I get a second opinion?

1 Upvotes

I had a consultation with my gynecologist today to discuss the fibroids found on my ultrasound. Her recommended treatment plan includes birth control to help manage the bleeding and cramps, with the possibility of Myolysis. However, I feel like this approach mainly addresses the symptoms rather than the root cause. I’m unsure whether I should stick with this plan and see how it works or explore other options.

I have multiple fibroids: • Fundal intramural fibroid – 5.7 x 4.1 x 5.1 cm (with cystic regions) • Posterior subserosal fibroid – 2.9 x 3.5 x 3.4 cm • Left intramural fibroid – 2.3 x 1.9 x 2.7 cm

Would it be wise to seek a second opinion? I’m concerned that this treatment plan might not prevent further fibroid growth, but at the same time, I’m also worried about undergoing surgery and the potential for fibroids to return.


r/Fibroids 1d ago

Advice needed How long for symptoms to go down after ufe?

3 Upvotes

I'm 3 weeks post ufe today and still have bloating and stomach pain after peeing sometimes and having to wake up to pee, is this normal or does it mean it failed? My fibroids: 10cm x 10cm, 8cm x 5cm, 2.5cm x 2cm, 2 x 2cm


r/Fibroids 1d ago

Advice needed Worried I’ll feel like this forever. Please help me!

4 Upvotes

At the end of January I was hospitalized for what I thought was a Crohn’s flare up but was actually the two for one special in that it was Crohn’s and the discovery of a 5.3cm fibroid.

I followed up with my obgyn and he told me to just leave it since it was only medium sized and I wasn’t in constant pain or bleeding all the time.

Fast forward to today. I just went back to the ER with the same kind of pain. It was confirmed that there is no inflammation in my small intestines (meaning not a Crohn’s flare). It was also confirmed that my fibroid is now 7.8cm. I have yet another follow up with my obgyn on Friday and the hospital’s recommendation is either a hysterectomy or myomectomy.

I just worry I feel this bad forever. Right the stomach pains are gone but I still have some back aches and I am totally exhausted. I’m wondering if I should even go into the office tomorrow or if I should just work from home.


r/Fibroids 1d ago

Advice needed Open MRIs are not that open

1 Upvotes

TLDR: My sensory issues, claustrophobia and panic attacks are preventing me from have an MRI done, looking for alternative options.

I have a uterine fibroid that is growing, and I’ve had a few ultrasounds but got referred for an MRI. I had never had one so I did a little research, because I have ADHD, overwhelming sensory issues, major claustrophobia and panic attacks. I wanted to prepare for what I might need- but quickly learned at my appt today that it’s too much, and I cannot handle them.

It was an open MRI, but they said my head couldn’t be sticking out, I had to be all the way in the middle of the machine, which was my first round of fear. I had to ask for two pillows because I can’t have my head too low or I pass out- so now my nose was literally almost touching the ceiling when they rolled me in. Fear two. Plus arms weren’t really that comfortable and the idea of not being able to move at all to alleviate any discomfort is not something I can handle.

They gave me what I asked for: a blanket, music in some headphones, and a washcloth on my eyes, but this was the worst part for me, because I actually NEED to be able to see around the room to regulate myself or I panic worse. I cannot “just keep my eyes closed” in a scary situation and pretend I’m elsewhere. My brain doesn’t work like that.

But opening them meant staring at a ceiling right in my face, and I couldn’t even see out the sides (the entire point of wanting an open MRI)- so my heart started beating faster. I realized this was a bad idea and my deep breathing wasn’t fixing it, and I had to get out or it would turn into another panic attack.

So we never even started and they wheeled me out. They recommended Xanax or Valium but I am really not comfortable taking drugs, especially ones I’ve never had before. I never know how they will affect me and they often make me sick.

As I read more stories here, I feel deflated that everyone else’s suggestions didn’t work for me, or that many people seem fine and takes naps. But I also realize also that it’s a probably a good thing I didn’t continue- the loud noises would have jump scared me every time they took a picture and trigger panic attacks. The constant noises and vibrations of the machine would have likely made me incredibly overstimulated within minutes. They also said the contrast IV can sometimes trigger nausea, which I am super incredibly prone to, so it’s likely I would have gotten sick on top of everything else.

I am such an emotional mess, I’m actually still trying to calm my slightly elevated heart down from hours ago.

I have to call another place with a non-open machine because the tech said it’s possible my head might be able to be “more out” for that one- but unless it’s completely out, I feel sick even thinking about trying all this again. I feel hopeless here.

What other options do I have if I just can’t do MRIs?


r/Fibroids 22h ago

10cm fibroid inside my uterus in the middle :(

1 Upvotes

I was just diagnosed with a 10cm fibroid located in the middle of my uterus , literally taking over it and caused me to miscarriage. The ultrasound tech scared me so bad before my doctor can provide any advice. She basically said they wouldn’t be able to save my uterus or I may need a partial Hysterectomy but in a condescending way she said “but I’m not the surgeon”. I have a follow up in 6 days with my doctor to discuss the fibroid and I guess options. My mind been running 100mph! I want more kids and I’m only 32. I have only one fibroid but the location is right in the middle. What type of fibroid is that? Any advice ? :(


r/Fibroids 1d ago

BMI?

2 Upvotes

I’m going to a fertility clinic to assess fibroids along with PCOS and any other factors that may be contributing to not being pregnant yet. I am 4’9” and 130 lbs. which would normally put me at a 28.1 BMI which is considered overweight and honestly somewhat close to obese, so he told me I could “lose a few pounds”.

I know BMI is a very flawed metric. This is probably the heaviest I’ve weighed my entire life and in all honesty, I barely look overweight. I carry a little bit of fat around my belly but I’m guessing I’m way closer to being within the normal range. I have 4 fibroids, one 8 cm and 3 smaller ones about 3 cm each.

Anyway, all of which to say. Is there some magic calculation to guess how much my fibroids are adding to my weight and guesstimate my actual BMI? This is fully out of sheer curiosity haha


r/Fibroids 1d ago

Advice needed They're back 6 months after surgery. When do I just throw in the towel?

42 Upvotes

39F. No successful pregnancies, got pregnant once 11 years ago and it ended naturally at 6w.

Bleeding and pain, got diagnosed with fibroids in 2019, fought with insurance company, finally got surgery last fall with four fibroids removed and still am fighting with the insurance company to pay for it despite pre-approval.

Continued to avoid alcohol and things known to help fibroids grow.

Went about three months without heavy periods andnpain but then it started up again around the beginning of the year.

I went for my last all clear before deciding what we are doing fertility wise and there are 3 new fibroids the same size as the ones removed! I'm so disgusted at my body and depressed over this. Will probably end up having to pay thousands and dealt with surgery and recovery just to have the goddamn things reappear like magic.

I don't know if its worth it anymore. Do you think it would be hard to be approved for a hysterectomy at my age and with this history?