I’ve been told a lot of lies in my life. “Heavy periods and painful periods are perfectly normal”, they said, and “having crazy mood swings that impact your personal relationships are also normal!” I’ve been led to believe that it’s a Woman’s curse to experience these things. That’s just how it goes, right?

When I was a teenager and in my early 20’s I thought I was one of the lucky few women in the world that didn’t have painful or heavy periods. That all changed at around 21 years old when I began experiencing very heavy periods. They were regular, but tampons no longer provided the protection I needed for my work day. I found I was changing them every hour or so. I was looking for any “band-aid” to assist me with dealing with the heavy flow. The pad and tampon combo, different brands of tampons, and finally menstrual cups. Menstrual cups saved my life for the last 20 years, but that’s another story. Right now I want to talk about my experience with uterine fibroids and the fact that heavy and painful periods are NOT normal. There are options which may help you avoid my fate of having a hysterectomy at 41 years old.

 

My period came as expected on October 7th, 2018. I went to insert my menstrual cup and was shocked and horrified to find that my cervix was now sitting right at the opening of my vagina. “Holy Crap!”, was all I could think as I struggled to make sense of what I had just discovered. I grabbed my smartphone and began to Google my experience. After calling one of my sisters, a surgical nurse,  I ended up on prolapsed uterus as a self diagnosis. A quick call to my doctor and I had  the earliest appointment available, about two weeks out. My period was especially heavy this time with a lot of pain. I had learned to manage period pain about 10 years back by being sure to start taking ibuprofen at the earliest sign of spotting until the last day of my period. Missing even one dose proved to be incredibly painful for me.

 

How did this happen? How did I end up with what I believed was a prolapsed uterus? I thought I was doing everything right. I did my kegel exercises regularly. I had my yearly pap smears (which turned into every other year in my late 30’s), and I always watched for and reported to my doctor any large blood clots or abnormal changes in my cycle.

 

In the years before the discovery of the dreaded prolapsed uterus, I found that I had even more painful periods than before. Sometimes the ibuprofen wouldn’t even put a dent in the pain and I’d be doubled over due to it. I had shared with my doctor at previous appointments about my heavy bleeding, pain, and mood swings. They tested my hormones and everything looked fine, so she suggested birth control to help get things back on course. That worked for a while.

 

At my next visit I again complained about pain and mood swings, and I was again told that it was normal for my age. I had gained a good amount of weight in the last 10 years, and I felt it was my fault I had the painful periods, and thought that losing weight would help. But, losing weight was really hard and my belly just kept getting bigger.

 

My next appointment with the doctor arrived and, at this point I was bleeding heavily and passing large clots for about 2 weeks. Even my period cup, which holds about 2-3 times what a tampon or pad will hold, was having to be changed every hour. All the signs they teach you to look for I realized I was having; heavy bleeding, more than 10 days, large clots bigger than a quarter, check, check, and check! I was getting nervous and didn’t have a lot of answers. The doctor agreed that further investigation was needed and referred me to an OB-GYN surgeon. That appointment was another 2 weeks out. Another long uncomfortable wait that grew longer with delay after delay. When I called to request an earlier appointment, I was told it was going to be a month before I would finally be seen as the doctor was away for a baby delivery and would then be on vacation. I cried to the nurse that I couldn’t continue bleeding for another month – was there anything that could be done, anything that could be prescribed to reduce the pain? Sadly, until a doctor could see me, there was nothing that could be done. Fortunately my primary care doctor was able to get me in a bit earlier.

 

While waiting for the next doctor appointment, my anxiety and fear were through the roof. It’s hard not to when you are bleeding so much. Sitting down to the toilet felt like I was giving birth to a baby blood clot. Looking into the toilet, it appeared something horrible had happened there. I wondered what the CSI would think if they were called to my house to investigate. I spent these weeks waiting, continually washing clothes and carpets. I could barely pull down my pants to change my period protection and without bleeding onto the floor. There is a constant need to calm yourself into believing it isn’t an emergency because of the amount of blood leaving your body. After all, the doctor says you are fine to wait several weeks or more to get in to see them to even develop a plan of action. I joked that there should be a period task force which is on high alert to help you in situations like this. I always felt I had empathy for people who were dealing with cramps and heavy bleeding. I had experienced some of those symptoms for years, but I never really understood it until it just wouldn’t stop. It was the murder scene, blood everywhere, period cup, pads, and depends undergarments couldn’t stop it.

 

Finally it was appointment day. During my appointment with the new OB-GYN doctor I learned that I had a larger than normal uterus, which he said felt to be the uterus of someone that is 4-5 months pregnant, and I was in fact bleeding profusely. He referred to it as hemorrhaging. He talked to me about my options, and given the size of the uterus and the prolapse, he felt having a hysterectomy would provide the best solution to correct the issues I was experiencing.

 

During this process they sent me to have an ultrasound and discovered I had fibroid tumors which had been there long enough to calcify. These tumors were large enough to press into my bladder, cause lower back and leg pain, and to stretch the uterus. All at once all of the symptoms I had been experiencing over the course of the last few years made sense.

 

I have fibroids, but what are they?

 

Due  to the nature of fibroids, they tend to either grow really fast or really slow, and so the symptoms may be gradual and paired with things like age and weight gain. You may feel things like:

  • Heaviness in the stomach area (I thought it was just weight gain)
  • Difficulty sitting up (again, I thought it was weight gain)
  • Frequent urination (several times in the night, not being able to make it through a 2 hour movie, or a plane ride)
  • Painful periods
  • Wide mood swings and feelings of depression
  • Lower back pain
  • Exhaustion – lack of energy
  • Heavy, irregular periods
  • Weight gain around the stomach area
  • Uterine aching (cramps) that were more painful than normal cramps.
  • Clothes fitting differently (like a pregnancy).

Fibroids are the most common tumors in a woman’s uterus. They are firm, compact tumors that are made of muscle cells and fibrous tissue. They can be as small as a pea, or as large as a watermelon, and it’s estimated that between 20% and 50% of women have them, though not all are diagnosed.

 

In the past, fibroids were mostly treated by performing a hysterectomy, or women just pushed through the heavy bleeding and pain. In the last 10 to 20 years there have been breakthroughs in the treatment of fibroids, which call for surgery to remove the tumors only, but sadly not everyone has access to these treatments, as many fibroids are not symptomatic, and doctors often will not order an ultrasound unless you are experience severe symptoms. Of course most of us would be left with less options for treatment by the time the symptoms are severe enough to constitute an ultrasound.

 

I do count myself to be one of the lucky ones. While I feel more can be done to treat painful heavy periods and get to the root of the issue and avoid surgery, I had health insurance, I actually had the option to see a doctor and have them tell me I was normal. What about all the women and girls out there who experience the symptoms of fibroids and do not have access to healthcare or even the period protection they so desperately need?

 

Why am I sharing all of this with you?

 

In my case, the fibroids had grown to a place where other treatment options would not help to resolve my issues, so a hysterectomy was the best option available. I would love to have had more options earlier on to avoid the surgery and I’d like to be able to share those options with others so they will understand that there are ways to treat the symptoms of uterine fibroids without invasive surgery.

 

First and foremost, painful and heavy periods are not normal and they should not have to be tolerated. While having a hysterectomy is something that can help relieve severe issues for many women, and that is certainly true in my case, it does come with consequences. It’s a painful surgery with a long healing time, and you lose a part of your body which helps to alert you of other health issues. It is an organ in your body with a purpose. Any surgery comes with risks, and with a hysterectomy you have the risk of injury to other organs or tissue in your body, and the risk of infection. It is unfortunate that women have been taught to accept painful and heavy periods as just a part of life, and that more is not done to assist women with alternative methods to find balance.

 

What happened next for me?

 

If you are a person like myself who is faced with the news that you now need to have a hysterectomy after being diagnosed with large fibroid tumors, know that there is relief after the surgery. I am currently at about 10 weeks post operation and the majority of my symptoms are resolved. I no longer have the lower back pain, no more heavy bleeding, no more frequent urination, and I actually feel much better emotionally as my body looks for a new balance. I wondered if I would be “normal” down there afterwards, and I am. There is no empty hole in my body. Everything looks and behaves the same. I was lucky in that I had a partial hysterectomy and was able to keep one of my ovaries. I know that isn’t the case for everyone. I do not require additional hormone medications, and my activity has pretty much returned to normal.

 

The hysterectomy was painful and recovery was difficult. I am still feeling more tired than normal, but I hear that my energy will come back in the next several months. I have some relief, but I’m still very frustrated that this was a choice I had to make and feel the other options were stolen from me.

 

Resources

 

During my frantic quest to get a second opinion, my sister put me in touch with a few resources to assist me with making the best decision I could for me, and in the hopes of trying to find other options for my situation besides a hysterectomy. If you are in a situation where you have either been told you have fibroids, or you are experiencing symptoms that are leading you to believe you might be, consider seeking out a women’s health coach or hormone specialist that might be able to assist you with correcting the issues you are experiencing without surgery.

 

A health coach I was put in touch with was Nicole Jardim, “The period girl”. Nicole is a women’s health coach who specializes in hormonal balances. Fibroids are fed by the blood in your body. She suggested Transexamic Acid. It’s a medication you can request from your doctor and you take just starting the first day of your menstrual cycle to help stop heavy bleeding. This can also help to cut the blood flow from the fibroids so that they may not grow as big. Most importantly, it may provide some relief from symptoms of heavy bleeding. Nicole also mentioned a new procedure called “Acessa” which uses radio frequency energy (or heat) to destroy the fibroids. Your body then absorbs them and the tissue heals. This would be an alternative that could be used if the fibroids are caught early and could help women to remain fertile.

 

Another resource was Robyn Srigley, “The Hormone Diva”. Robyn specializes in natural methods through health and diet, to regulate hormones in the body. Generally if you are experiencing issues with your period, it’s likely because there are imbalances in your body. These imbalances can be corrected by making changes to exercise and diet.

 

Closing Thoughts

 

If you have already gone through a partial or full hysterectomy, a hormone or womens health coach may help you to find relief from other hysterectomy related symptoms. My experience is that my physician and OB-GYN were not thinking about how to bring me back to what is considered healthy and normal, but rather how to get me to accept and live with the pain and heavy bleeding which seems to be considered normal in the medical community. Eventually it leaves women begging for relief in the form of a very invasive procedure like a hysterectomy. It shouldn’t be this way.

 

I realize my experience is mine. Everyone I have talked to has had their own unique experience. But what was similar between all of us is that the doctors weren’t listening to our complaints, and painful periods and heavy bleeding was normalized as acceptable. Coming out of this experience myself I was angered and frustrated to learn that it doesn’t have to be that way. Still, the symptoms are so common that many have been lead to believe this is normal and just part of life. There are options to relieve the pain and symptoms and bring the body back to a healthy state. I hope sharing my story will help others to find the relief and avoid my fate.

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