This past year has been a wild ride for me. About a year ago on a random Tuesday morning, I woke up, sat on the toilet, realized things “down there” didn’t feel quite right, and had a mild panic attack. I think my exact words were, “Wow. Holy [email protected]$*t! My uterus is falling out of my body!!!!!”
Remember back five years or so ago when I wrote that I had a “tilted uterus” and that it was a very common after effect of pregnancy? That it wasn’t harmful, but only affected how I need to insert my menstrual cup? That its only real side effect was a tiny bit of urinary incontinence when I did sports? What I didn’t know then (and what I wish I’d known) is that a tilted uterus isn’t a thing, medically speaking. It’s actually a condition known as pelvic organ prolapse, and if left untreated it only gets worse.
In fact, it can often require major surgery — surgery which uses a controversial treatment of mesh slings to hold your pelvic organs in place. There are three major types of pelvic organ prolapse: uterine (uterus collapse into the vagina), cystocele (bladder collapse), and rectocele (colon collapse).
Me? I’ve got all three!
How did it get to this point? Based on all the reading I’ve done in online support groups and message boards for women with pelvic organ prolapse, my story feels very common.
According to the National Institutes of Health, 24% of all U.S. women currently have pelvic organ prolapse and 50% of all women over 80! (source)
If it’s so common, why aren’t we talking about it? Why did it take my by surprise?
And more importantly, is there something I can do to keep it from taking you, my dear readers, by surprise?
Pelvic Organ Prolapse: Symptoms I’d Wish I’d Known Weren’t “Normal”
Until this year, I’d been told by multiple doctors, physiotherapists, nurses, and other lady friends that the below symptoms are very common post-birth and are really nothing to worry about.
They were wrong! These symptoms don’t exist in a vacuum and almost always reveal themselves as part of a larger problem.
1. Urinary Incontenence
It started after the birth of my second baby. I’d run across the street and pause in horror on the other side when I realized the jogging had cause a little squirt of pee to come out. Oops!
I’d jump on the trampoline with my kids and accidentally piss myself.
From everything I’d read online to all the friends I’d confided to in person, the consensus seemed to be that this is normal post-birth and that the solution is simple: do pelvic floor exercises to strengthen your pelvic floor.
So I started doing my kegels religiously, tried to get into routines of doing squats and lunges and using my fitbit, and even invested in a treadmill desk.
It helped! My incontinence became a little more rare. But I was still looking at it as if it were the only problem and exercise the solution.
This past January, my “solution” stopped working. My incontinence grew suddenly worse.
Now I would piss myself when I sneezed or coughed, and not just occasionally, but EVERY. SINGLE. TIME.
I now know that my incontinence was getting worse because my “tilted uterus” was actually falling into my bladder, pushing my bladder lower and lower until now it’s almost fully collapsed!
In fact, all that exercise probably made my prolapse worse. As any lady with pelvic organ prolapse will tell you, once you have prolapse, most “normal” exercise (think squats, lifts, running, sit ups, etc) only exacerbates the problem. Instead, you have to switch to special exercises that have been approved by a licensed Pelvic Floor Physiotherapist.
Generally speaking, my body’s always erred on the side of constipation. I’ve long assumed it’s kinda normal, just how my body’s internal chemistry works out.
Does it help? Yes.
Did it keep me from realizing that my constipation was actually caused by my colon collapsing into my vagina? Yes!
3. Back Pain
I started getting routine massages, like religiously.
Now I know that this mild back pain was actually being caused by my pelvic organs all falling out of place. (They’re basically a pile of mush down there. Ugh!)
4. Reduced Sexual Sensitivity.
As embarrassing as all this is, it needs to be said. One of the earliest symptoms of prolapse I can remember, second only to feeling my cervix in the wrong place and being told that it was “just” a tilted uterus, is that sex felt … different.
Once again, when I brought it up with the gynecologist who fitted me for my diaphragm (sorry! This whole post is feeling a bit TMI at the mo), she told me it was normal.
She said that it’s common for the vaginal walls to be super stretched if you’ve had children, and for that to cause decreased sensitivity during intercourse. Nothing to worry about. Just focus more on clitoral stimulation, and you’ll be good to go.
In fact, while it is normal, it’s also a common symptom of pelvic organ prolapse.
All of these symptoms are “normal,” if you define normal as something fairly common to the average woman.
Yes, it’s all normal! But so is Pelvic Organ Prolapse.
Here’s the deal, ladies.
Pelvic Organ Prolapse is normal. It will affect half of all women in the course of their lifetime. (source)
It affects nearly 1 in 4 of all women post-birth, and once they hit menopause, the numbers keep rising.
Sadly, doctors are used to thinking of it as a condition of aging, so when a younger woman comes in with all the same symptoms they tell her she’s fine … until she’s suddenly not fine and actually needs surgery.
I’m trying to avoid surgery. Here’s what seems to help.
The first thing you absolutely must do is visit a urogynecologist. Not a gynecologist. Not a urologist. A urogynecologist. They are the only medical professional who specializes in pelvic organ prolapse, and they are the only ones who can give you a clear diagnosis.
If you try going to a gynecologist, they won’t be on the lookout for prolapse. In fact, the last time I went to one I had multiple stage 2 prolapses and they told me everything was fine down there. That’s because they did my exam with me on my back and my feet in stirrups.
A proper exam for prolapsed organs is done with the patient standing up and/or squatting, FYI.
Once you get your diagnosis, here’s what can make living with prolapse more manageable:
1. Get Fitted for a Pessary
Pessaries are devices that get inserted into the vagina and hold everything in place.
They have a long, weird history. “In fact, the problem of uterine prolapse and its potential treatment is described in the oldest documented medical literature, the Egyptian Papyri, where it is written, ‘of a woman whose posterior, belly, and branching of her thighs are painful, say thou as to it, it is the falling of the womb,'” (source). In ancient times, treatment for prolapse included everything from succussion (see drawing) to leg binding. Eventually pessaries started being used. Originally, they seemed like nothing less than torture devices. Bronze, inverted cone shaped pessaries with perforated circular plates? No thank you! (source)
They eventually evolved into more comfortable models like wine-soaked wool that had been wound up and tightly compressed or vinegar-soaked sea sponges that had been shaped to insert. (source) Even pomegranates were halved and inserted to try to keep internal organs from falling out! (source) In the 16th century, Ambroise Paré, the royal surgeon who treated no less than 3 kings during his lifetime, invented the pre-cursor to the modern pessary for the queens and queen mothers under his care.
These days, pessaries are made of medical-grade, non-irritating silicone. A well-fitted one is comfortable, allows for freedom of movement (including squats!), keeps all your pelvic organs from further succumbing to gravity, and can be worn during bowel movements. Many types can even be worn during sex.
I have a couple of pieces of advice for any of you ladies who need a pessary.
First, if at first you don’t succeed, try and try again! It took me three attempts to get a well-fitting pessary, and each attempt before the last was more and more discouraging.
You see, pessaries come in all sorts of shapes and sizes. They can range in size from a few centimeters wide to a few inches wide. Different shapes are better for different types of prolapse. And some have clear advantages (like being able to stay in during sex!).
Some urogynecologists are stuck on one type over another, with the hands-down favorites being a ring pessary (the top row) or the gellhorn (second from the left on the bottom row.) As my luck would have it, neither of those was particularly good for my multiple stage-3 pelvic organ prolapses.
I eventually settled on a cube pessary (3rd one, bottom row) and insert it every time I need to be active. It’s very easy to insert and remove (particularly if you have any experience with inserting or removing menstrual cups).
Second, don’t be afraid to experiment! I tried out quite a few new things before I settled on my cube pessary. For example, did you know you can still buy sea sponges to hold your uterus in place? A number of women completely swear by them, saying that once you figure out how to trim them to the right size, there’s absolutely no pessary more comfortable than a sea sponge.
Of course, my prolapses were bad enough that a sea sponge is not adequate. I needed something more durable and firm that I could insert higher into my vagina.
And, I still want to try the Inflatoball, which is only available for purchase from the UK and Europe (what’s a little extra VAT compared to the value of a more comfortable life?). One of these days, I’m going to buy it and try it.
My point? It’s easy to get discouraged when trying and failing to find solutions. It’s easy to give up and resign myself to surgery, but I believe the key to living successfully with pelvic organ prolapse is experimentation and optimism.
2. Switch Your Exercise Program
As I said above, most standard exercises can make your prolapse worse. If I had known this years ago, I firmly believe I could have stopped my prolapse in its tracks before it progressed further.
Basically, it’s really important to avoid most full-body exercises. Any exercise that increases pressure on the abdominal area will exacerbate your pelvic organ prolapse. (source) Think sit ups, leg lifts, dead lifts, planking, push-ups, etc. Even walking or running (especially without a pessary to support your pelvic organs!) can make stage 2 or 3 prolapses worse. (source)
It’s important to use specially designed exercises that either isolate your pelvic floor muscles or isolate your other muscles away from putting pressure on your pelvic floor.
A Pelvic Floor Physiotherapist is a must for teaching you these exercises. If your insurance doesn’t cover one, you may find yourself in the same boat I was in — desperately searching YouTube for pelvic floor friendly exercise programs.
Mostly, you’ll find a lot of individual pelvic floor physiotherapists selling their own online exercise program. I’ve evaluated a half dozen of them now, and I’m most impressed with the MUTU system! They have a FREE 30 Day Pelvic Floor Challenge that you can sign up up for which uses a 6-minute daily workout as the baseline. (Click here to sign up for the FREE challenge!)
3. Use a Kegel Toner
So, I know this sounds like a joke. I thought it was super weird at first, too. But now it’s definitely my favorite thing to have bought so far this year.
In fact, over in the UK and a significant part of Europe, kegel devices are commonly prescribed to patients with incontinence. My UK lady friends were all shocked that it wasn’t my urogynecologist’s first recommended treatment method.
I recently purchased the K-Fit Kegel Toner. On average, when you do a kegel without the aid of a device, you probably flex about 40% of your pelvic floor muscles. According to the K-Fit manufacturer, with the aid of their device, it increases to about 90% efficacy.
I’ve been using it now for nearly 6 months, and I have seen results! Not only have I been able to increase the strength and length of the exercise program I’m using, but I no longer have stress incontinence!! I don’t accidentally pee on myself when I sneeze or cough. And, with time, I’ve noticed my cervix resting higher in my vagina, too.
The most important thing to remember when it comes to using a kegel toner is to put the nodes horizontally instead of vertically (stimulating the sides of your vaginal opening rather the front and rear). If you position it wrongly, it will feel like it’s “pinching” your bladder and rectum — an uncomfortable situation, to say the least.
4. Use Estrogen Cream
Now, I’m not sure how important this is, but the studies seem to show that a drop in estrogen levels weakens the vaginal walls (allowing uterine prolapse to get worse). (source) It is recommended that you use a topical estrogen cream, specifically to insert and remove your pessary and to massage into your vaginal walls daily because it’s more effective than oral hormone pills. (source)
This was an especially hard treatment for me to accept because in all other areas, I showed signs of estrogen dominance. What I can definitely say after 6 months of daily use is that this did not worsen my estrogen dominance symptoms.
After some research, I decided to go with BioLabs PRO BioEst 2.5 bioidentical estrogen cream. It uses both Estriol and Estradiol, so it has your bases covered. And I don’t need more than a pump in the morning massaged into and around my pelvic floor and a pump to lube up my pessary per day.
Pelvic Organ Prolapse Resources
After my panic attack moment last year, I did a small amount of research over the course of a week and realized I had Pelvic Organ Prolapse. I also realized that not many women talk about it openly because it’s such an embarrassing topic.
I joined the Association for Pelvic Organ Prolapse Support (APOPS) and read a ton of their articles. I even joined their private Facebook group so that I could talk to women who were experiencing the same thing as me. Those online forums have been a life saver!
It’s also made me realize that I don’t have it as bad as many other women. Despite severe, multiple prolapses, I’m not in inexplicable disabling pain, nor do I have a job that requires me to be on my feet all day. The symptoms I highlighted today are just the tip of the iceberg, a mere introduction to a topic that is wide and deep and has thousands of articles about it posted online.
If you suspect you may have pelvic organ prolapse, feel free to leave a comment below and I will do my best to answer your questions, commiserate with you, and/or steer you in the right direction for finding the medical help and resources you need!