Uterine fibroid nightmare.

@flowneedstogo52
I have had heavy cycles since age 11 which worsened as I got older. I had polyps removed which made bleeding heavier and told an IUD would help reduce the heavy bleeding until I went through menopause. This helped significantly. I am also in my 50s. I have fibroids as well but they haven’t caused too many issues. My sister had a hysterectomy due to large numbers of fibroids and complications in her 40s (never had children).

Wheat I am surprised by is that you weren’t seeing a gynecologist regularly before and after the bleeding occurred and why an IUD or other procedures weren’t offered to help stop the bleeding that were less invasive than hysterectomy. I had D&Cs to remove polyps and extra lining of uterus causing bleeding. Did they ever do ultrasounds of pelvis when you started having bleeding problems? Did you have a regular doctor checking bloodwork to detect the iron deficiency sooner? Are you getting your blood and iron checked regularly now? My mother ate ice and chewed on paper for a long time which is a sign of iron deficiency annd pica and she had heart disease/diabetes (died of a heart attack).

Here is what AI suggests for your case:
“ I'm really sorry to hear about your experience with uterine fibroids and the health challenges you've faced. It sounds incredibly difficult, and it's understandable to feel overwhelmed and fearful about surgery. Here are some steps and considerations that might help you navigate your situation:
1. Consult a Specialist
Gynecologist: If you haven't already, seek out a gynecologist who specializes in fibroids or women's health issues. They can provide a thorough evaluation and discuss your options.
Second Opinion: If you're unsure about the recommendations from your current doctor, consider getting a second opinion. Different doctors may have different approaches to treatment.
2. Discuss Treatment Options
Medications: There are medications that can help manage symptoms, such as hormonal treatments that may reduce bleeding and pain.
Minimally Invasive Procedures: Options like uterine artery embolization (UAE) or laparoscopic myomectomy may be available, which can help reduce fibroid size without a full hysterectomy.
Hysterectomy: If your symptoms are severe and other treatments have not worked, a hysterectomy may be necessary. Discuss the risks and benefits with your doctor, especially considering your heart condition.
3. Lifestyle
Diet and Hydration: Maintaining a balanced diet and staying hydrated can help manage some symptoms. Discuss any dietary changes with your healthcare provider.
4. Monitor Symptoms
Keep a detailed record of your symptoms, including the frequency and duration of your menstrual cycles, any pain, and other related issues. This information can be valuable for your healthcare provider in determining the best course of action.
5. Addressing Anemia
Since you've experienced anemia due to heavy bleeding, continue to monitor your iron levels and discuss with your doctor about the best ways to manage this, including dietary changes or iron supplements.
6. Mental Health
Dealing with chronic health issues can take a toll on mental health. Consider speaking with a mental health professional if you're feeling anxious or depressed about your situation.
7. Educate Yourself
Learning more about uterine fibroids, their symptoms, and treatment options can empower you to make informed decisions about your health.
Conclusion
It's important to prioritize your health and well-being. While surgery can be daunting, it may provide relief from your symptoms and improve your quality of life. Make sure to have open and honest discussions with your healthcare providers about your fears and concerns, and don't hesitate to seek out the support you need.”

If your iron levels are as low as they sound, you may be a candidate for ferrlecit therapy. It’s intravenous iron therapy, usually given as a group of 6 shots. I think it beats blood transfusions. Here’s some info from the web

Ferrlecit (Sodium Ferric Gluconate): An Overview
Ferrlecit, also known by its generic name sodium ferric gluconate complex, is an injectable iron supplement used to treat iron deficiency anemia in specific patient populations.
Here's a breakdown of key aspects:
1. Uses
Iron Deficiency Anemia (IDA): Ferrlecit is primarily used to treat IDA, a condition characterized by a lack of red blood cells due to insufficient iron in the body.

Replenishes Iron Stores: Ferrlecit works by replenishing the body's iron stores, enabling the production of more red blood cells and improving hemoglobin levels.
2. Administration
Intravenous (IV) Infusion or Injection: Ferrlecit is administered intravenously (into a vein) as an infusion or slow injection by a healthcare professional.
Not for Home Use: This medication is typically given in a hospital, infusion center, or provider's office, and is not usually self-administered.

Monitoring is Crucial: Patients should be closely monitored during and after Ferrlecit administration for signs and symptoms of adverse reactions.

@flowneedstogo52: Welcome to Mayo Connect and thank you for sharing your medical background so openly. How scary to have awoken in the hospital under those circumstances. May I add you've chosen an appropriate user name based upon what you've been through!

I was immediately struck by your comments about eating ice as that is a symptom in itself associated with anemia. There is some more information about this here: https://www.mayoclinic.org/diseases-conditions/iron-deficiency-anemia/expert-answers/chewing-ice/faq-20057982
There is also this on heavy menstrual bleeding: https://www.mayoclinic.org/diseases-conditions/menorrhagia/symptoms-causes/syc-20352829
Sites such as these, which are verifiable and informational from a reputable source, are what I find to be preferable for learning about individual conditions as opposed to a general search that may yield an overload of data that may not be relevant to your particular case - that can add to feel confused and overwhelmed and is something we hope to dispel as much as possible by your being here in the first place. Sharing stories from others who have been in similar situations may help to shed light on your circumstances and provide some direction. Of course, it's always important to recognize everyone has a different medical history and set of issues so what may work for one individual may not for another - while alternatives may be discussed, the ultimate decision resides with you and your health care provider.

Another thing many of us do (I know I have!) is look back and second guess things we could have or should have done differently. Honestly, though, that serves no purpose as we cannot change the past and what led from there to here. But we can arm ourselves now to be as informed and pro-active in being our own medical advocates by understanding the situation from a medical perspective as best as possible. Ideally this is by researching the condition - again through reliable sources - and having open, honest conversations with a provider with whom you have also researched and feel comfortable in rendering care. Getting to the root cause of the problem, rather than applying a temporary solution, may be your goal to consider when approaching this undertaking. It may require getting yourself equipped from a medical and psychological perspective.

I sense you've taken that first step by coming here. Where else along this process do you feel you are now? For example, do you feel you have an understanding of what is causing the issue and what the options are for treating it? Do you feel your fears need to be addressed more fully?

This does not give me hope.. I am 48, having 2-3 periods a month, having body pain, dizziness and fatigue. I am praying for us both.

@alwaystriving770 perimenopause is very real! and each woman is different - when she starts, her symptoms, duration, when she reaches menopause - which is just a moment in time, every thing after this time is called "post menopause". In other words perimenopause is no joke for a lot of women - me among them 🥴😵‍💫

A little of my story ... I was diagnosed with uterine fibroids in my early 40's. Hysterectomy was recommended by an endometriosis specialist but my gut told me to get a second opinion on the hysterectomy recommendation - long story, I got a second opinion and I didn't get the hysterectomy in my early 40's. Perimenopause (and menopause) has its share of 'crazy' - I believe caused by the hormonal fluctuations and our individual genetic code has a big part to play, too.

Fast forward to today ... 56 years old and post menopause on HRT for 3 years - with daily back pain and feelings of unwellness. I annually see a gynecologist who manages my HRT and she asks the right questions at every visit ... "how are you doing, do you have any bleeding" ... she opens every visit with these two open ended questions.

It's important to be open and honest about how you are doing and feeling and about your bleeding with your doctors. Two months ago my gyn asked these questions and after my response she advised me to have a trans vaginal ultrasound to help identify my pain source - no bleeding for me, which told her something, too, and gave her another path to also consider - "adenomyosis".

The ultrasound showed I have a uterus full of fibroids - two > 5cm in size and another calcified - neither of those are operable due to location and can only be removed via hysterectomy. Also, my endometrium is thickened and my ovaries weren't detected. It's what the ultrasound didn't show her that caused the most curiosity. She wanted more testing ... a hysteroscopy with dilation to explore further.

Just yesterday, I had a hysteroscopy to help make an informed decision for next steps ... the endometrium was scraped, a couple fibroids were removed along with a polyp - everything was sent off to pathology. Follow-up with gyn in two weeks and we'll map the next phase.

I believe my point in sharing all of this with you is this ... my path, like the one you and so many woman are on right now has not been easy. We need healthcare providers that WILL & DO listen to us. But most importantly 'we' are the most important advocate when it comes to 'our' health. Speak-up, speak loud if you have to until your healthcare provider(s) listen. Take good notes, go to every appointment prepared. Our bodies speak to us every minute of every day and it is our responsibility to listen. My final advice ... consult with your gynecologist and ask if further testing eg. a pelvic ultrasound or an MRI is warranted to help rule out certain conditions. In my case it's cancer that I'm hopeful to be ruling out. Be well and know you are not alone. 💜