Many of you should be jealous...

[fraidycat]

According to my doctor...

Because my progresterone level is "beautiful". 😂🤣

On the other hand, the fibroid that is over 5cm in size, not so much. 😩

Do any of you have experience with fibroids and super-heavy cycles? Were you able to get it under control without surgery?

My b12 level is "humble, but not horrible" according to him, so I will probably start some supplementation for that to get it more optimal; if you have any recommendations on form/brand/bio-availability, I am open to suggestions.

 

 

[footballmom]

I have two fibroids over 2cm each and see a gyn in a few weeks who is supposed to be very knowledgeable about fibroids.  I also have super heavy cycles and have problems with b12.  My doctor said even when it’s in “normal” range it’s still pretty lousy overall.  So, I commiserate with you and I’m proud of your beautiful progesterone 🙂

[Pawz4me]

I don't remember how large my fibroid was. I tried BCP and they didn't help my super heavy, almost never ending cycles. The anemia was awful. Between the bleeding and the anemia (exhausted, continually short of breath, etc.) I spent most of the time on the couch or in bed. I don't know how women who have to work and deal with an issue like that manage. My fibroid was situated such that, other than trying BCP, there were no good alternatives other than hysterectomy, and that was far and away the best health decision I've ever made. That was almost 17 years ago and I haven't once had any reason to regret it. I don't know if there are more/better alternative procedures now or not.

Sorry you're having to deal with it. Definitely not fun.

[Faith-manor]

I don't know what size my fibroid is anymore. It was situated badly for removal, and insurance would not approve a hysterectomy, so the docs won't do anything but prescribe bcp. Since so have a condition that makes bcp contraindicated, I never to "live with it". Sigh. American healthcare. Not a thing. Trauma care yes. Everything else, not so much.

I have no advice except to say I hope you can get the needed hysterectomy if that is your best route.

I understand about humble B12. Keeping mine out of " How the hell are you still standing?" range is about the best I seem to be able to do! And the only way I do that is eating some red meat and supplementing, but then the doc gets snarky about heart healthy diet should not have red meat. Well doc? I don't really know what you want me to do with those competing problems. Oy!

Congrats on the progesterone! 

[MEmama]

I have an ultrasound in a couple weeks for a suspected fibroid. Not sure what to expect.

Does having beautiful progesterone mean you’re doomed forever, or that menopause will be soon for you? (Sorry for my hormone ignorance). If it’s soon, I am insanely jealous!

Edited October 14, 2021 by MEmama

[Selkie]

1 hour ago, Faith-manor said:

I don't know what size my fibroid is anymore. It was situated badly for removal, and insurance would not approve a hysterectomy, so the docs won't do anything but prescribe bcp. Since so have a condition that makes bcp contraindicated, I never to "live with it". Sigh. American healthcare. Not a thing. Trauma care yes. Everything else, not so much.

I'm sorry about your situation - that sounds miserable. I wonder if your doctor could find a way to get the insurance company to approve surgery.

As problematic as American healthcare is, I was thankful for it when I had my hysterectomy in May. 

I'm in a hysterectomy support group that has over 30,000 members from around the world. Some of the women from countries with universal healthcare have absolute horror stories about not being able to get approval for hysterectomies despite massive bleeding, pain, etc. If they do get approval, the wait times can be insane - many, many months or even years. Some are booted out of the hospital right after surgery with absolutely no follow-up care at all, not even a visit or phone call with their health care provider to make sure healing is going well. Some are in the situation where robotic surgery would be best for them, but it is not widely available in their countries, so they have to come to the US to have surgery. 

In contrast, I first discussed hysterectomy with my doctor in mid-April. Less than month later, my surgery was over and done. The whole process moved very quickly and smoothly, and I had excellent care throughout. As many times as I have grumbled about healthcare and health insurance, I was so grateful at how positive my experience was compared to women from other areas of the world.

 

[MercyA]

No personal experience--yet--but my mom had a fibroid the size of a grapefruit and refused to get surgery, preferring to tough it out until menopause. After seeing what she went through, I'm very ready to get a hysterectomy if needed. Her bleeding was so heavy that she couldn't leave the house at times and she was very physically uncomfortable, too, for years. 😞 It did shrink after menopause, but I wouldn't have the patience she did. 

Congrats on your progesterone levels! 🙂 Hoping and praying for direction for you on the best way forward. 

[fraidycat]

3 hours ago, MEmama said:

I have an ultrasound in a couple weeks for a suspected fibroid. Not sure what to expect.

Does having beautiful progesterone mean you’re doomed forever, or that menopause will be soon for you? (Sorry for my hormone ignorance). If it’s soon, I am insanely jealous!

I'm not sure and I didn't think to ask. I suspect I have a ways to go yet. I'm 46.

[HS Mom in NC]

Well my husband has, according to the doctor who did his colonoscopy, a "pristine colon."  I told him, "Yeah, babe.  You're good at math and you have a pristine colon.  You really are the whole package.  What more could a girl want?"

I had 4 fibroids, the largest of which was, after my doctor translated it into relatable terms, a pound in weight. It was pressing on a ureter and causing kidney pain. Surgery was my only option.  I had the choice of fibroids only removal or uterus and cervix removal. I had robotic surgery.  There was a fibroid on my cervix too, so no more uterus, no more cervix, no more periods.  Woo hoo! I'm thrilled with the results! I hadn't felt that good in years! I feel very sad for myself when I think back at how I had gradually felt worse and worse and didn't realize what was going on.

B-12 only works in supplement form if your digestive tract is absorbing it normally. They can test you to see if supplements are working for you.  Mine wasn't and my levels were so low my doctor said she was, "...surprised you can get out of bed..." so it's injections for me for the rest of my life. No big deal-I give them to myself every 2 weeks in my hip and can barely feel them.

[historically accurate]

I was not able to get mine under control without surgery. When I was 25, I had my first (equivalent to a 9 week pregnancy) fibroid removed. I had 3 smaller ones removed around age 30. I had my ovaries removed when I was 35 due to ovarian cancer risk. They took the uterus as well because I had more fibroids growing, and since they were in there...

I am sorry you are going through this. Fibroids suck.

[KSera]

1 hour ago, Selkie said:

As problematic as American healthcare is, I was thankful for it when I had my hysterectomy in May. 

I'm in a hysterectomy support group that has over 30,000 members from around the world. Some of the women from countries with universal healthcare have absolute horror stories about not being able to get approval for hysterectomies despite massive bleeding, pain, etc. If they do get approval, the wait times can be insane - many, many months or even years. Some are booted out of the hospital right after surgery with absolutely no follow-up care at all, not even a visit or phone call with their health care provider to make sure healing is going well. Some are in the situation where robotic surgery would be best for them, but it is not widely available in their countries, so they have to come to the US to have surgery. 

In contrast, I first discussed hysterectomy with my doctor in mid-April. Less than month later, my surgery was over and done. The whole process moved very quickly and smoothly, and I had excellent care throughout. As many times as I have grumbled about healthcare and health insurance, I was so grateful at how positive my experience was compared to women from other areas of the world.

 

This is one of the things I worry about with how we move forward with better healthcare for all. I want everyone to have access to healthcare and absolutely think everyone deserves it. But I also worry selfishly because our healthcare currently is so much better than what my family in countries with universal healthcare has access to. They have to wait so long for everything and sometimes they just can't get approval for something that I know would be no problem for me to get approved here with my private health care. I don't know how we come up with a system where everyone gets care that is hopefully still as good as we're able to get now. I hope we can come up with something though.

[ktgrok]

7 minutes ago, KSera said:

This is one of the things I worry about with how we move forward with better healthcare for all. I want everyone to have access to healthcare and absolutely think everyone deserves it. But I also worry selfishly because our healthcare currently is so much better than what my family in countries with universal healthcare has access to. They have to wait so long for everything and sometimes they just can't get approval for something that I know would be no problem for me to get approved here with my private health care. I don't know how we come up with a system where everyone gets care that is hopefully still as good as we're able to get now. I hope we can come up with something though.

The thing is, it varies even here. Someone in this thread said they couldn't get surgery approved by private insurance. And many places where you have months long wait for any gynecological visit. 

Edited October 15, 2021 by ktgrok

[KSera]

7 minutes ago, ktgrok said:

The thing is, it varies even here. Someone in this thread said they couldn't get surgery approved by private insurance. And many places where you have months long wait for any gynecological visit. 

That's true. I guess what I want, if I can talk wishful thinking, is the kind of health care that my family has been fortunate to have to be available to everyone. I have had many different insurance companies over my life, and all have had better access to care than my overseas relatives (with the time spent in an HMO the worst for me). Part of that is living in an area with lots of options and part is the insurance coverage itself. I'd love to see the outcome be the same as that for everyone.

Edited October 15, 2021 by KSera

[TechWife]

48 minutes ago, KSera said:

This is one of the things I worry about with how we move forward with better healthcare for all. I want everyone to have access to healthcare and absolutely think everyone deserves it. But I also worry selfishly because our healthcare currently is so much better than what my family in countries with universal healthcare has access to. They have to wait so long for everything and sometimes they just can't get approval for something that I know would be no problem for me to get approved here with my private health care. I don't know how we come up with a system where everyone gets care that is hopefully still as good as we're able to get now. I hope we can come up with something though.

There are a lot off accessibility issues in the US, too. Which specialists, surgeries and how fast you can be treated is dependent upon the availability of the specialist you need being in your geographical area and the existence of a hospital in your geographical area - both of which have to be on your insurance plan. I could tell stories about the area my husband grew up in - a day wait to get to a preemie to a high level NICU, heart attack patients waiting overnight in the tiny rural hospital for the ambulance in the city two hours away to get to them, get them to the city hospital and then they see a cardiologist for the first time. People with COPD who aren’t able to ever see a pulmonologist - instead they are treated by the 75 year old gp that really needed and wanted to retire years before. Cancer patients traveling a couple of hours in each direction daily to get their chemo. It’s not all roses & daffodils here.

ETA - Medicare was the best insurance my parents ever had. They got everything they needed when & where they needed it. 

Edited October 15, 2021 by TechWife

[KSera]

Just now, TechWife said:

There are a lot off accessibility issues in the US, too. Which specialists, surgeries and how fast you can be treated is dependent upon the availability of the specialist you need being in your geographical area and the existence of a hospital in your geographical area - both of which have to be on your insurance plan. 

It’s not all roses & daffodils here.

 

I know. I acknowledged that on follow up. That doesn’t mean that’s a desirable situation though. As I said, I wish it was better everywhere, for everyone. It not even that it’s perfect here—waits for mental health services can be far too long for care that is truly urgent, and not everyone has good coverage. My own insurance company is not accepted by as many providers as most others. But I hope we don’t end up with a situation where women are routinely blown off while in constant pain as it just being a normal Issue they have to live with because surgery is too expensive or the wait too long (which I realize happens here as well, but I am speaking to @Selkie‘s experience of that being very common place in some places.)

[TechWife]

Just now, KSera said:

I know. I acknowledged that on follow up. That doesn’t mean that’s a desirable situation though. As I said, I wish it was better everywhere, for everyone. It not even that it’s perfect here—waits for mental health services can be far too long for care that is truly urgent, and not everyone has good coverage. My own insurance company is not accepted by as many providers as most others. But I hope we don’t end up with a situation where women are routinely blown off while in constant pain as it just being a normal Issue they have to live with because surgery is too expensive or the wait too long (which I realize happens here as well, but I am speaking to @Selkie‘s experience of that being very common place in some places.)

Understand. I hadn’t seen any follow ups when I responded. 

[NewIma]

Would an IUD be a possibility? I was having heavy periods that lasted 10-14 days, and my doctor said I could get an ablation or an IUD. I ended up getting the mirena IUD 2 1/2 years ago and it has been a game changer. I don't even get a period now!

[BeachGal]

@fraidycat some women have taken serrapeptase for their fibroids. I do not have fibroids but have taken serrapeptase for a short period of time — 9 months or so — for Dupuytren’s Contracture nodules in my hand which ... maybe helped? Around that time I also began experimenting with fasting to induce autophagy and that did seem to work. At least one nodule went away and the other is almost gone. Very slow process but at least it’s not progressing. Serrapeptase can cause spider veins, though. Also, you’d of course want to do it under your MD’s watchful eye if you were to try it. It’s not super dangerous but it’s best to be monitored regardless.

I suspect that many age-related problems are caused by years of insulin resistance and its effect on other hormones and health. Might be worth testing for insulin resistance just to see.

[PeterPan]

If you have your genetics (likes 23andme) you can run them through a free engine like knowyourgenetics.com and determine the type of b12 to take. I use a sublingual adenosyl b12 which works fine for me. https://www.amazon.com/KAL-Adenosylcobalamin-Activmelt-Strawberry-White/dp/B01N9OO0CR/ref=sr_1_24?dchild=1&keywords=kal+b12&qid=1634264436&sr=8-24  Most people would take a methylb12 form. 

[fraidycat]

37 minutes ago, NewIma said:

Would an IUD be a possibility? I was having heavy periods that lasted 10-14 days, and my doctor said I could get an ablation or an IUD. I ended up getting the mirena IUD 2 1/2 years ago and it has been a game changer. I don't even get a period now!

After my first and last experience with an IUD, I'm more likely to just get a hysterectomy if those were my choices. I had a non-hormonal (copper? It's been awhile!) one inserted after I had DS. I had it removed 3 or 4 months later after bleeding for the whole time it was in. It was hellish! 
 

I will note that generally my cycles are not super painful, just (sometimes, not every time) extremely (30-45 minutes between changes) heavy. I do get cramps (not necessarily correlated to when it's super heavy) but Aleve every 12 hours for a day or two is enough to keep that under control.

When I was younger, I had lots of severe pain every month but pregnancy and giving birth seemed to "cure" that. If I return to that level of misery on top of the extreme flow, I will just get it all removed.
 

 

[NewIma]

1 hour ago, fraidycat said:

After my first and last experience with an IUD, I'm more likely to just get a hysterectomy if those were my choices. I had a non-hormonal (copper? It's been awhile!) one inserted after I had DS. I had it removed 3 or 4 months later after bleeding for the whole time it was in. It was hellish! 
 

I will note that generally my cycles are not super painful, just (sometimes, not every time) extremely (30-45 minutes between changes) heavy. I do get cramps (not necessarily correlated to when it's super heavy) but Aleve every 12 hours for a day or two is enough to keep that under control.

When I was younger, I had lots of severe pain every month but pregnancy and giving birth seemed to "cure" that. If I return to that level of misery on top of the extreme flow, I will just get it all removed.
 

 

Bleeding for 3 months sounds absolutely awful! It might be worth still asking about it though-would a hormonal IUD be different? Also, I have heard that sometimes people have ongoing bleeding after insertion if the IUD is inserted at the wrong time in their cycle. Is there any truth to that? A hysterectomy is a huge decision so checking all options, even just to make you more confident in getting a hysterectomy might be helpful for peace of mind.

Thinking of you as you deal with this.