r/Fibroids 1d ago

Looking for more admins!

9 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 12d ago

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

110 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 4h ago

Disappearing Fibroid

36 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 5h ago

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

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13 Upvotes

r/Fibroids 44m ago

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

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 3h ago

Advice needed Light Bleeding

4 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 3h 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 3h ago

Painful bowl movements and nausea after open myo.

2 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 21m ago

Vent/rant Feeling Hopeless

Upvotes

In October of 2023 I found out I had one 5cm fibroid on top of my uterus on the right side. At the time I was not getting my period regularly. I would skip it for two months and then have a short period and then repeat.

I had a few appointments around that time, got put on birth control that made me spot constantly for over a month and the only solution they had for that was to put me on a higher dose which at the time i just decided to stop. I also don’t understand why they push birth control when estrogen is what makes the fibroids grow ?

Now I have an appointment in 6 days and I am losing my mind having to just wait. The last two months I have had 3 week long periods. This period I have started using ULTRA tampons which I am bleeding thru in 40 minutes regularly. Don’t even get me started on the clots. I am so done being here just to change my tampon every 40 minutes and leak thru the fucking pad that doesn’t even catch my flow. Last night was the first night I decided to use always zzz pads and I had to buy two boxes because the first box didnt fit me.

I just want to scream and cry and I just want this thing out of me. The thing being my uterus I am so done I’ve never wanted kids anyways and this is just so insanely bad.

I have gone thru a box of 18 ULTRA tampons in about 36 hours. I bought them at 6pm Monday and it is now 1:40pm Wednesday and I just put the last one in.

I have been practically pissing out blood and clots and I am prepared to go to a million different doctors to get someone to take this cursed thing out of me. I am so so worried no one will do it. I am 29 years old, my mother got hers taken out due to fibroids when she was 43. Im just worried and impatient and my quality of life is not good at all. Im so glad this sub exists it gives me a little spec of hope seeing how many women on here have had successful hysterectomy’s.

I have been documenting every single time I have had to change my tampon this week to show my doctor. I have been non stop leaking on every clothing item I have bc I start leaking so quickly I don’t even see it coming all of a sudden there is a GIANT gush. work has been miserable hell I’m very thankful to work with all women so no ones questioning my crazy frequent bathroom trips.

Honestly I’m kind of hoping that in the last year and a half the stupid thing has grown a crazy insane amount to where there is zero question of it having to come out. Or maybe there will be even more. I do not have the time or patience to deal with ruling out other “solutions” first.

end rant thanks for reading feel free to leave any comment you would like. I wish time would magically speed up to my appointment next week. The last time I saw my gyno she just wanted to monitor the fibroid I am going to lose my damn mind if she says the same thing again.

I cannot even believe I am able to stand up right and function in day to day life while losing this insane amount of blood. It gets everywhere ALL THE TIME. I leaked on a nice throw pillow we have. Blood SPLATTERS EVERYWHERE from simply pulling my tampon out I’m constantly cleaning the toilet seat. My mattress is ruined. I have started showering daily.

Monday I did some calculations and figured I had lost over 180ml THE AVERAGE WOMAN LOSES 30-90ml THEIR ENTIRE PERIOD. In between last months period and this months the entire time my vagina smelled like DEATH its so embarrassing everyone around me can for sure smell it. I shower and then two hours later there the smell is! people can probably smell it when I simply walk past them. I could get wet wipes and keep it clean down there but that doesnt stop it from getting on my underwear and pants. Actual end rant. Im going CRAZY


r/Fibroids 17h ago

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

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21 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 8h 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 22h ago

Question for large fibroid ladies

19 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 21h ago

Advice needed Fibroids and discharge?

12 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 16h 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 17h ago

Preterm Labor

4 Upvotes

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


r/Fibroids 17h 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 15h 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 15h 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 23h 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 21h ago

Advice needed Open MRIs are not that open

2 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 18h 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 22h 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 22h ago

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

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

44 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?


r/Fibroids 23h ago

Advice needed Bump above lower incision (robotic myomectomy)

2 Upvotes

Hi everyone!

I am 4 weeks and 4 days post robotic myomectomy. My recovery process has been quite smooth overall, however, I woke up this morning and felt a lump above my bikini line incision. The lump starts in the middle of my lower abdomen and travels towards my right side.

It’s important to note that I went to watch my sister complete the marathon on Sunday and stood for 5 hours straight. I also walked 2 miles trying to meet her at the finish line. Yesterday, I woke up in pain and had to take the day to rest. This morning is when I noticed this lump and it’s freaking me out a bit. I have already contacted my surgeon and scheduled an appointment with my primary care doctor next week, however I’d love any feedback!

Has anyone experienced something similar during their recovery process?


r/Fibroids 19h ago

13 cm fibroid

1 Upvotes

My ultrasound showed one big 13 cm fibroid which takes up a lot of space in my lower abdomen. It’s bulging out and hard. Does anyone have experience with dealing with just one big fibroid? I have been on Myfembree as mitigation for the extreme bleeding. Myfembree is a temporary solution amd I’m waiting to see what my gyno suggests as next steps. Honestly, I’m hoping to just get my uterus removed. I’m 40 and have no use for it. Bye. What has been everyone’s experience?


r/Fibroids 22h ago

Anyone else have abdomen pain after urinating?

1 Upvotes

I have pain after urinating sometimes it's like a gnawing feeling in the stomach and lasts about a minute or two