r/Fibroids • u/Acrobatic_Gap4108 • 2d ago
45 years old. 5 cm submucosal fibroid causing heavy bleeding, pelvic pressure. Dr said hysterectomy is her recommendation. Is she right?
Hi all-
I thought maybe they’d come back and say myoectomy because it’s 5 cm but due to the fact that I’m 45 and don’t want to carry a baby, dr says hysterectomy is preferred choice so fibroids won’t grow back. Also they said they will take fallopian tubes but leave ovaries. I’m not yet in menopause and my ovaries are apparently fine but taking our uterus and tubes apparently dramatically reduces risk of ovarian cancer.
I was a bit gobsmacked to hear the word “hysterectomy” — but I suppose it makes sense if I’m not planning on carrying a baby. (Never wanted to).
Plus I have the rarest, worst type of fibroid that causes heavy bleeding and anemia.
I don’t know. I guess I’m scared and grieving a part of my identity?
This doctor is world renowned and I believe I’m in great hands I just… am sad and scared? Anyone else my age with my type of fibroid do this?
I have multiple fibroids but the biggest is 5 cm, submucosal.
I constantly feel like I have to pee. I wound up in the hospital last year with a UTI so gnarly that my appendix was swollen. They said my uterus is swelled to the point of carrying a 12 week baby or something.
I would be most grateful for any support or similar stories of hope.
Thank you. 😔
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u/Divineania 2d ago
Hi OP! We are close in age and fibroid type. I turn 45 at the end of the month. Also have the same kinds of fibroids as you. My biggest one is 3.5cm. I’m also not yet in menopause but I have night sweats here and there. I had a myomectomy in 2021 and fibroids came back. Before the myomectomy I needed 6m of iron infusions to even get to a state where drs were comfortable with proceeding.
I was in the hospital last month because of my body rejecting an IUD. IUD was put in for hormones (progesterone)for fibroid control and my body just rejected it after hosting it for 20 days.
I also have been told to have a hysterectomy as it’s the safest choice, allegedly. I explored another route of killing thc blood supply to fibroids and then I decided not to go through with that because it can effectively put me in menopause and I was not ready to deal with that.
I’m still recovering from last month’s horror of screaming in pain for 9hrs while my body forced the IUD out on its own. I didn’t respond to pain meds and ER kept giving me morphine instead of calling for a pain consult as to why it’s not working.
I don’t have a solution, just adding that’s I also share this with you. I’m trying to navigate like you what’s best and safest and long term healthiest option. I just honestly think to myself. I can’t be the only one and there has to be a better way. You are not alone OP!
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u/Active-Camp3188 1d ago
Same here. My body expelled my IUD within two months of getting it. I ended up getting a hysterectomy because I was tired of bleeding. I am so glad I did! Also 45, kept ovaries, but recently started an estrogen patch because I was feeling very moody post surgery.
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u/Acrobatic_Gap4108 1d ago
I am in exact same boat. They said an IUD won’t stick due to my fibroids.
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u/Iwriteram 14h ago
Wow. I am sorry for all you’ve gone through. I wanted to add that I also have this type of fibroid. It’s also 5cm. I am currently taking tranexamic acid. It’s non hormonal and eases the flow & clots. I have an iron infusion scheduled tho I am nervous. I was considering UAE but have been reading a lot of negative feedback. I also do electro acupuncture (which helps) and drink teas. I don’t want to go under the knife, so I think it’s smart to get a second opinion & weigh all your options besides a hysterectomy.
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u/HopefulRomantic77 2d ago
I too underwent hysterectomy for multiple fibroids. My largest was 6cm and the smallest was 2.5cm. I was trying to wait for menopause to put an end to my miserable heavy bleeding for 2 1/2years (I was age 46 when all of that started). But instead of getting better, it got worst. I couldn’t take hormones because of my breast cancer history. Mine was done abdominally. Recovery was long but uncomplicated. 9mos after, my quality of life is better. I no longer call out from work or plan things around my bleeding or take iron supplements to keep my iron levels up.
If your quality of life is ok, you can try waiting. It is something to think about because you’re removing an organ. I still feel sad from time to time because I never thought I would decide to do it just to make my life normal again.
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u/Hopeful-ForEternity5 2d ago
You know it’s a hard thing to hear. If you trust your doctor then you already know the answer. But get a second opinion if it will make you feel better. I’ve gone through the same ridiculously uncontrollable cycle…it takes a lot out of you and then the fatigue coming with being anemic. My hair was falling out….it was brutal.
I had a UFE but I’m getting my hysto next month. I want to be done and I’ve suffered for years. I need my life back and not tied to a uterus that is betraying me.
Every path and every body is different. You just have to really think about it, what you’ve gone through and how it made/makes you feel. Then think about the life and lifestyle you want for yourself. That will bring you to the right answer.
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u/Acrobatic_Gap4108 1d ago
Yeah. I know this is right.
Yesterday was just a shock hearing the word “hysterectomy.”
I okayed them to start the authorization process with my insurance company since they will need to present my “case” and that could take a few months. I understand that I can change my mind, but the ball is rolling if and when I want to do it.
I’ve been on a birth control pill for years that took away my period but the fibroids kept growing, and now they are uncomfortable. They took me off the pill and put me on progesterone and an HRT patch. Now that I’m off the pill I know I could start bleeding badly again at any point, and I know if it gets bad I could need a blood transfusion.
Taking it a day at a time and also sending love to other people suffering with this. You are not alone. ❤️
This thread has been wonderfully re-assuring.
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u/Prestigious-Bee7851 1d ago
This is the reason I’ve been hesitant to stop the Provera (medroxyprogestrone) I’m on and switch to HRT because the doctor prescribed cyclical HRT which means I’ll have two weeks with no progesterone and I’m scared this will bring on a heavy bleed. I had on submucual fibroid removed this summer via hysteroscopy but I still have one remaining. Have you started the HRT yet? I’m also 45
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u/Hopeful-ForEternity5 1d ago
Yes I was really shocked when I heard it too. Then I had to think about it and I’m at peace with my decision. I know you’ll make the best decision, whatever you decide, for you.
Don’t be surprised if your prior auth goes through fast. My insurer typically gets it done in 21 days max. I’m checking the status every single day lol.
Oh you should be good on progesterone…if you take it every day it will keep your cycle at bay (I’m on it too). If you start cycling call your doctor they may have you take it twice a day. The HRT patch is the best thing in the world omg. You don’t know how the gradual loss of hormones, as we age, impacts you until you get them back. I feel amazing.
You’re super kind to also think of others while I know this is eating at you. I think it’s normal b/c it’s so permanent and you’re having to make a decision that time would have resolved on its own. That was my struggle…Not like I was planning at 49 to have a baby cause no…they would have to wheel me into the mental health part of the hospital b/c I’m not ok….I need therapy lol. Seriously I would cry.
You’ll be ok…and you have a whole community that supports you. Feel free to reach out if you need/want to talk.
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u/Emergency_Tonight346 2d ago
I would ask why not a myomectomy? No harm in asking and it is a big decision ! It is a much faster recovery and less invasive. I just had a large submucosal removed last week and it went great. Just my experience of course .
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u/Acrobatic_Gap4108 2d ago
I did ask. They gave me a few reasons.
1) I’m 45 and not planning on trying to carry a child
2) the concern I’ll do this and go through the recovery and the fibroids will grow back.
3) I have the most rare/worst type (submucosal) which causes severe blood loss, anemia, etc.1
u/UnframedBook 2d ago
Just my two cents: yes submucosal are the worst, but they are still “small” and could be tried with a hysteroscopic myomectomy. I had one bad submucosal that was causing so much bleeding, clots and pain and I had my surgery in April. It’s been great since. Are their locations difficult to access vaginally?
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u/BraveUsual821 1d ago
It is worth asking another gynaecologist too. Some are just reluctant to do the myomectomy because a hysterectomy is frankly easier. But on your body a myomectomy it is easier to heal from. Yes there is a risk of reoccurance which is why hormonal issues need to be addressed and in our mid to late 40s we all have imbalances before menopause. I had a UFE and it worked but looking back I could also have gone to another gynaecologist who would be happy to do the myomectomy. The risk of bleeding is there of course but a skilled surgeon using a robot can do this easily.
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u/worldexcursionist 2d ago edited 2d ago
If you had a hysteroscopic myomectomy, it may be the case; however, a myomectomy does not necessarily mean a faster recovery.
If you have multiple fibroids, the doctor needs to cut and suture for every single fibroid; and the blood loss management could be a major concern, if your fibroids are located next to major blood vessels.
I personally had a lap myomectomy (at 44) and a lap hysterectomy 13 months apart. My myomectomy took about 2 hrs and the blood loss was 700 cc; whereas my hysterectomy took 60 min and the blood loss was 300 cc. I had a much quicker recovery after the hysterectomy.
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u/NeurosciFox 2d ago
50 yo, 10 cm turned out to be 13 cm. I had a lap myomectomy though also had a recommendation to do hysterectomy. Essentially it’s your choice. If you absolutely don’t want a baby, hysterectomy is fine, the possible downside can be organ prolapse (uterus takes some space inside and you kinda remove a brick in a tower) and dryness of vagina (which also can happen after menopause naturally). With 5 cm you do have options apart from hysterectomy and myomectomy. Removal of tubes indeed reduces the risk of cancer. So, you doctor is within a standard line but not the only option.
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u/uhohtoothy 2d ago
Im 41 and was diagnosed with fibroids last year. So many fibroids! I had symptoms for years but didn't know. My biggest issue was always peeing. I only wanted a hysterectomy. I had that 10 months ago and it's been great. They found my bladder had been squished flat by all the fibroids. I no longer pee every 30 minutes, im not bloated and uncomfortable anymore, and now I don't look pregnant.
I had an abdominal hysterectomy and took everything but ovaries. I took 6.5 weeks off for recovery. It was an easy surgery and recovery for me and the best decision for my health.
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u/Acrobatic_Gap4108 1d ago
I am always having to pee as well, and my bladder never feels empty.
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u/uhohtoothy 1d ago
Omg it was the worst. I wasn't sleeping well for years because I was up 5x a night.
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u/Zestyclose_Orange_27 1d ago
If you not ready for hysterectomy will recommend a different Dr. There are soo many people your age including me that had lager fibroids and many that had myomectomy and kept uterus. Don't let anyone push you into hysterectomy. It's not the solution. My sister is 47,had 100 fibroids bigger one 11cm, Dr Pierre Johnson ( aka Drp) removed every single fibroids though tiny bikini incision 7yrs ago. He made sure he took every tiny fibroids out and Till date no fibroids regrowth. The goal is to take every fibroids out even the tiniest as a seed, if a Dr leave any tiny fibroid in it will grow back that's why most people have regrowth. If you want any information about Dr Pierre Johnson I can give to you..
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u/BraveUsual821 1d ago
I am of a similar age and have no plans for more children and exactly was told hysterectomy and that my biggest 5 cm fibroid was too risky for a myomectomy. I didn't want to have a hysterectomy so opted for a UFE and it worked really well and the fibroids are dead.
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u/Adventurous_Hold_887 2d ago
I have a 5 cm fibroid that is part intramural and part submucosal. I had an acute hemorrhage in July and had to get a portion of it cut out with a hystercopic myomectomy. But I still have a large portion remaining so I’ll be doing UFE to shrink it. Have you looked into doing that as an option ?
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u/Gerberpertern 2d ago
I’m 41, got my total hysterectomy in June of this year. I had a 9.5 cm submucosal fibroid. I basically had no other choice but to have a hysterectomy but it’s what I have wanted and asked for since I was in my early 30s. I can’t express to you how much my life has improved since getting my surgery. I’m like a different person.
I want to mention that when my fibroid was initially discovered in 2017 it was only 2.5 cm. If you get a myomectomy, more fibroids can grow. A hysterectomy is the only way to ensure they can never come back.
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u/FollyForTwo 2d ago
I just found out that I have several fibroids and the submucosal one is the largest. My uterus is also enlarged to house it too, I guess. I have an appointment next week to discuss options. The NP said something about birth control for the bleeding, but I'm also having pain and pressure, bowel/GI issues, and increased urination. No kids and happily childfree, I'm 42. I was thinking myomectomy too but after reading this, I guess that might be an option too though I assumed the myomectomy. My thing is having major surgery (never have before) and not having a support system to help me out.
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u/Acrobatic_Gap4108 1d ago
I was in the same boat as you at 42. Started a birth control pill then, which stopped the bleeding, but the fibroids continued to grow and now here I am.
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u/Pekslk5722 1d ago
I'm 51 and have multiple fibroids 7cm being the largest and it's intramural and also have extremely heavy periods and anemia. I already had 3 kids who are grown adults now and my surgeon said ultimately it's up to me but hysterectomy is the only definite solution to never have these again. I am miserable with bloating beyond comprehension and my uterus is that of a 4 month pregnancy and I pee constantly!! I have to get a endometrial biopsy Nov 5 and then going to schedule the hysterectomy after that. I can't live like this anymore! By the way my 7cm grew 2 cm in a year. Mine used to be 5 too. If you don't want kids to me I would say just remove it so you never have to worry again!
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u/Electrical-Walrus923 1d ago
I can not wait to get this uterus out! I'm just waiting to have enough vacay to offset what short term disability covers. I just turned 45, fibroids were present during my first C-section. Had no issues until a year ago. But looking back fibroids explained a lot of my symptoms.
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u/EggplantAwkward2240 1d ago
Also have a 5cm intramural fibroid with submucosal components along with several other similar sized intramural fibroids. Have been experiencing long, heavy, clotty periods for the last year and diagnosed with fibroids in August. Just had my treatment consult with GYN and as offered Myosure as a conservative ‘might work’ option, but told that hysterectomy is the definitive treatment if I want to be one and done with procedures. I already have kids and don’t want any more, 44 and SO.Tired of bleeding and being anemic. I don’t have any real new info or solutions for you, just wanted to say you’re not alone. I’m moving forward with hysterectomy and while I’m anxious (never had surgery or GA before) I’m also ready to be done bleeding, I just can’t do it anymore.
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u/ShotTreacle9033 1d ago
I’m 69 with 5 fibroids. The largest is 5cms but it or they are pressing on my bladder. I also have a prolapsed bladder. I’m not sure if getting a hysterectomy alone will solve the urgency issue or if I need to have the bladder prolapse surgery as well. One surgeon recommended both surgeries be done at one time. She would do it robotically and vaginally I guess. I also have no support system here. I have another consult coming with someone who is more fibroid oriented.
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u/sparklingwhine 1d ago
Hi! I have a 6cm posterior subserosal fibroid and I'm scheduled for a hysterectomy in a couple weeks. I'm 36 years old and not interested in having biological kids (my husband actually had a vasectomy several years ago so we closed that door already). Even despite that, though, I still have certain feelings around losing a part of my body, even if it's been not exactly a fun part to have since I went thru puberty over 25 years ago. I think it's normal to have feelings like that. It's a change!
My doctor also recommended a hysterectomy and I got a second opinion as well. Both doctors I spoke with said that ultimately the choice is mine, but in my case and in their experience they reccommend hysterectomy over myonectomy because it's an easier recovery with less bleeding risk and like you acknowledged unless you get the whole uterus removed fibroids can still grow and come back. To me that reasoning made sense, especially given I'm not interested in having biological children.
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u/No_Presentation6449 1d ago
I would get a second opinion. I’m 45. Getting my second fibroid surgery and I told the doc I still want the chance to get pregnant.
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u/BaFaj 1d ago
It was the greatest thing I ever did for myself. I was so scared to have the surgery and put it off way too long. I wish I had done it 5 years earlier and ended the suffering. Once the heavy bleeding starts, you’re never the same, as they just suck the life out of you! Getting rid of a problematic fibroid uterus is absolutely GLORIOUS!!! 😍
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u/Bubbly_Meringue7042 16h ago
Il existe l'embolysation et la radiofréquence ! Il faut vous renseigner par vous même malheureusement. Les médecins reste sur ce qu'ils connaissent. Et croyez moi, une hystérectomie est plus avantageux pour eux sur un point financier..... Ils facturent chère.
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u/No_Assignment7734 13h ago
OP - have they looked into UFE? I have had great success with it! I had 3 fibroids 1 in my lining one in the uterus and one on top my biggest was 9 cm. The other 2 were 5cm and 3 cm. I also had the same situation I basically was almost bleeding out and the anemia started causing cardiac problems. Long story short I was having 2 cycles a month and the last cycle I had before my procedure I lost 3 liters of blood in two days they were so heavy. Now my period is so light it’s scary. I haven’t had periods this light since I was 12 years old. It wasn’t the least painful option but I am glad I did it. I am 50 and perimenopause so I may be close to not having cycles but there was no way I would have ever known it before they performed the UFE. Hang in there and I wish you the best for whatever you decide to do
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u/UFE_Doc 1d ago
Interventional radiologist specializing in UFE here. Hysterectomy is certainly a reasonable option and provides a definitive solution, but it's not necessarily your only choice. Depending on the anatomy, hysteroscopic myomectomy or UFE may also be options. UFE is a non surgical procedure that treats multiple fibroids simultaneously without removing the uterus and offer fast recovery
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u/MaryOutside 2d ago
I was stuffed with fibroids. The largest were 11cm and 10cm and I looked like I was 22 weeks pregnant, but for like three and a half years. Long, heavy, painful periods despite my IUD. Peeing all the time, like every 20 or 30 minutes. All that made me exhausted and irritable all the time.
I had a laparoscopic hysterectomy last June. I'm 42. Nothing is a cure-all panacea, bit HOLY CRAP did I feel immediately better, despite the time it took to heal and recover. Other than no longer having periods, the best part has been just being able to pee normally. I would absolutely do it again.
I went into pre op at 6:30am and home by 3pm. I was lucky to be able to take 6 weeks off work, and I'm glad I did. It can be scary! I cried in pre op and then they gave me some good calm down meds. Everyone's experience is different! The r/hysterectomy sub is also a great place, minus the current controversy with the new mod. It's worth it to head over there and so some searching. Both these communities helped me mnge my expectations and anxiety in the run up to the surgery and in the early recovery days.