My sister - age 50 - went in for a routine gyn visit this week - dr said her uterus was very enlarged and that she has very large fast growing fibroid and needs hysterectomy. She is having ultrasound in 2 weeks, but seems to accept this diagnosis and surgery recommendation at face value. Not planning on a second opinion. I would certainly get a second opinion and explore other options first. What do you think? Anyone ever have a similar diagnosis? Dr says her fibroid is going to damage her kidneys if not removed?
Definitely second opinion.
Always a second opinion. Hope you are able to convince her.
ALWAYS a second opinion when the treatment is as radical as this.
I wonder how he can tell how fast it is growing without a vaginal ultrasound. I first got this diagnosis 6.5 years ago, as I was in peri-menopause. Interesting she didn’t feel symptoms if it is very large. I felt like I was 5 months pregnant and couldn’t lean forward without feeling it. Dr. really pushed a hysterectomy, but would only do it open, so I said, “no thanks”, I’d wait it out. I was so relieved it wasn’t cancer that I figured I could live with it.
Has she gone through menopause? They typically shrink then. Mine did cause very heavy bleeding. I was determined to wait it out and did. I can tell mine is there at times. A recent incident of colonoscopy prep gone bad resulted in an abdominal CT and another vaginal ultrasound–my largest fibroid is approximately the same size as 2010, which is between a lemon and an apple. Mine lies on my bladder and reduces its capacity.
Fibroids are the most common cause of hysterectomies and they are very rarely cancerous. A great site is hystersisters. I would caution her time may be of the essence if she wants it done laparoscopic and it’s growing. Definitely would seek a second opinion before surgery.
Thank you. She is having the ultrasound in 2 weeks. I’m guessing dr says it is fast growing because it was not evident last visit. Sister is overweight - so maybe that is why she was less aware? Not gone through menopause yet. Dr says she cannot have laproscopic because she is short and the measurement between naval and pubic area is not long enough.
I am going to wait until she has ultrasound results and if dr still advising hysterectomy I will stress second opinion. She just seems to have completely bought into this - already told her boss she will need up to 6 weeks off, etc. I feel like this dr has terrified her by saying large fibroids could be cancerous and impending kidney doom if she does not have hysterectomy.
Thanks for the website suggestion.
Two weeks is a long time to wait for an ultrasound; we get our patients in same day or the next day if needed. Assuming your sister was in for an exam last year, and the doctor was not able to feel the fibroid before, would warrant an ultrasound. Being overweight would not keep your sister from noticing the fibroid.
Once she has her ultrasound, I bet you will be able to lead her to a second opinion if you think that is needed. Sometimes the ultrasound will be telling enough that there is no question what needs to be done.
I don’t understand the long wait for the ultrasound either - it is 2/16 - so really more that 2 weeks away. She lives in Springfield MO - so not major city but not remote rural area either. Apparently her doctor is a regular ob/gyn - is there a specialist one should see for this?
I mentioned overweight in thinking that it might make it harder to notice that you have this swelling or distended area. How would she have this extremely large fibroid and not be aware of it?
No need for a specialist unless something shows on the ultrasound. A routine hysterectomy is something your typical OB/GYN preforms weekly, of not more often; don’t let that worry you.
Physician here (not OB/gyn). I had huge fibroids that greatly impacted my quality of life (including travel, clothing, terrible anemia-- ugh ugh ugh). I resisted surgery for so long (lupron injections, depo provera injections, etc) and then finally had a transvaginal hysterectomy after two three years of horribleness. Best decision I have ever made. Postop tissue examination showed they were actually leiomyomas-- fibroidlike growths so deep into the tissue that even after menopause I would likely have continued bleeding. The surgery was transformative (for me).
Get all her options and second opinions, try other treatments, do research. But don’t be afraid of surgery. Whatever choice she makes-- it will be okay. Good luck.
From the reading I have done today, it seems that having fibroids so large that kidney damage could result is very rare. I just feel this should be a one step at a time process and it seems like she has been diagnosed and told she needs a hysterectomy before all the facts are in. Of course, my sister tends to be the type who jumps to the worst case possible, so for all I know maybe doctor said she might need a hysterectomy and she has jumped the gun by telling boss, friends and family it’s a done deal.
Can you have large fibroids and not know it? It seems like women who have large fibroids have pain, heavy bleeding, etc. My understanding is she had no symptoms and was unaware she has this supposed huge fibroid. Just not making a lot of sense to me.
I was told I had extensive fibroids in my late 30s, later I was thought to have ovarian cancer, had the transvaginal surgery and they ended up taking out all my girl parts plus spending hours removing extensive (stage IV) endometriosis, I never knew, but in hindsight it makes sense, I just never complained to the OBG about the pain & bleeding. It had been that rough since my teens so I did not think to compain, I just thought everyone had that.
As said above, the hysterectomy I avoided for years has been transformative, I feel better, so much better, much more energy & vitality and love having 28 good days a month & not worrying when camping 
I had a huge uterus due to multiple large fibroids, but wanted to avoid a hysterectomy. I was 48, hadn’t started menopause, was practically hemoraging every month, seriously anemic. I ended up having a uterine fibroid embolization. It was a very painful day, and required a night in the hospital for pain management, but I was up and at a family reunion three days later, rather than predicted months of recovery from a hysterectomy. I am 56 now and have been able to go through menopause naturally. I would recommend UFE to anyone in a similar situation. It had only been approved for the purpose of shrinking fibroids for a few years when I had it.
Absolutely - a person can have huge fibroids and not be aware of them at all. Many women have painful periods, but how would you decide if the pain is “normal” or due to some abnormality? There is really no reference point… I was told that fibroids usually do not result in painful periods, but endometriosis does. I would get a second opinion from a GYN that specializes in such issues.
I never had painful periods, they just gradually got heavier. Also was shocked to learn my uterus had grown to a similar size of a five or so month pregnancy. I am slim and hadn’t gained weight. It didn’t pop outward like a pregnancy though.
I had the same diagnosis. I did get a hysterectomy. I wish I had slowed down a bit and explored my options.
I could tell I had a fibroid (I could feel it when I touched my abdomen) and it put pressure on my bladder. However I did not get anemic or have many of the other bad symptoms some women get.
I had surgical complications. After the fact I found out that complications with hysterectomy are high. Let me tell you when you have a complication you really second guess your decision. I was so angry at the surgeon and at all the people who said “go for it -it is the best decision I ever made”
I am fine now. But I am still having some issues from my surgery. I have decreased Kidney function on one side and wound up with another procedure after my hysterectomy.
There have been many times when I regretted my decision.
I had huge fibroids (the size of tennis balls) which were causing heavy bleeding. My doctor did a myomectomy, removing the fibroids and saving the uterus. It allowed me to become pregnant with twins the following year! So saving the uterus was extremely important to me. Maybe it’s not so important in to someone in their 50s.
The myomectomy was major surgery with a C-section like incision and a couple of nights hospital stay.
Thank you for the input. I am going to strongly suggest to her that she slow down, do some research, have the ultrasound and get a second opinion before just accepting a verdict of surgery. While it might be necessary, there seem to be other options. She’s a bit of a drama queen and right now seems to be focused on telling everyone and garnering sympathy. She assigned me the role of being with our elderly parents when she calls and tells them. I see no reason to tell them beforehand. Call them after, IMO. But thank you again for the info.
I had a large one and no symptoms at all. Post menopause, doctor says it’s undetectable (no ultrasound now/yet, though I had them in the past.) But even if 99 women have one situation or no issues, it doesn’t mean the 100th is fine.
The doc can tell when the uterus is enlarged and, I’d guess, from the apparent location, if it’s pressing toward the kidneys. You may not have an exact verbal report from your sister. It may not be affecting kidneys yet and the doc may not be saying a hysterectomy must be scheduled for next month. Yet. That could explain why the u/s wasn’t done immediately. There are also kidney function tests that would have alerted to problems. (I don’t know if they’re part of routine lab work, but I get a report that includes various kidney markers, after my annual labs.)
My bff had the transvag 10 months ago, after years of suffering. For her, the procedure was easy. It’s the decision that’s hard, brings up a lot of emotions, I guess about our womanhood. But, at times, it helps to look at this as a medical necessity (if it is) or a quality of life issue (in bff’s case, with bad symptoms, nearly every day of the month was affected. None of the stop-gaps ever worked more than a few months.) And personally, once properly and fully informed, I wouldn’t risk kidney issues and the complexities, pain and aggravation of dealing with that. Not to mention life expectancy.
Best wishes.
I have a good friend whose fibroids grew after menopause (most shrink). I think the doctor said they were the size of a 3 month fetus? She had a hysterectomy - it was minor surgery (no big incision). She ended up with some complications - infections, painkillers causing stomach issues and landed in the ER twice. It took her a good 6-9 months to fully recover but her surgery was probably still necessary .