What Does Pelvic Organ Prolapse Really Feel Like?
“It feels like something is coming out of my vagina…all the time. What does that mean for the rest of my life?” When people are first diagnosed with pelvic organ prolapse, they’re often hearing about this condition for the first time. The lack of information is surprising, since up to 50% of women will develop pelvic organ prolapse at some point in their life. But, like many conditions that primarily impact people with vaginas, the research is lacking and the topic is taboo.
“I feel like people don’t talk about [prolapse] enough.it’s a bit like miscarriage. It makes it harder for people to know where to get the right information and to ask the right questions.”
The problem with pelvic organ prolapse being a taboo topic is that those going through it rarely feel validated, or get the empowering treatment and care they need to feel better. In addition to the long list of symptoms you might experience with prolapse (persistent pelvic heaviness, low back pain, and painful sex to name a few), a prolapse diagnosis can feel scary, emotional, and isolating.
While most research is limited to prevalence and treatment, a recent study focuses on the lived experience of prolapse — how it impacts people’s sex lives, self-esteem, work, exercise, and hopes and fears for the future — and damn it can feel good to have your experience validated!
We took a look at the Pelvic organ prolapse: The lived experience study alongside Origin’s Physical Therapist and Clinical Learning & Development Lead, Dr. Ashley Rawlins PT, DPT. Here’s what participants had to say about pelvic organ prolapse, in their own words.
What does pelvic organ prolapse feel like?
Dr. Rawlins explains that like any condition, it really depends on the person. The prolapse experience can vary based on which organ or organs are involved and the grade (grade “0” is normal anatomical position, whereas “4” means the vaginal vault has completely prolapsed out of the body). For many people, pelvic organ prolapse can feel like a heavy or dragging sensation in the low belly, vagina, or rectum.
“I feel like my insides are going to fall out.”
“I just felt I had no support so like it was just, just like weight, you know? Just like a dragging, hanging feeling, and then…you felt like you didn’t have…the strength or something, you know?”
“Subconsciously you think of it all the time, like so you almost think like, what can I do to fix it like, you know, all the time.”
“I’d say I think about something related to my prolapse three or four times an hour.”
Prolapse can impact self esteem
Some people with prolapse describe feeling broken, which can really impact self-esteem — especially when it’s hard to know whether you’ll ever get back to “normal.” People have reported negative changes in body image, annoyance, frustration, anxiety, and sadness. If you’re feeling any of these after learning you have prolapse, you’re not alone.
“I definitely feel less…feminine, I feel…I feel weak, because I feel like there’s something holding me back…I don’t feel like the person I was before.”
“You kinda just think it’s older women that it happens to...I’d never have thought that my bowel would be bulging into my vaginal wall.”
“You feel broken, you feel completely banjaxed, you feel like you’re an old woman before your time…you know, you don’t feel attractive.”
Prolapse gets pushed under the carpet
Many participants talked about how pelvic health diagnoses feel stigmatized or taboo. Friends and family never seem to discuss prolapse. Dismissed by healthcare professionals, some said they weren’t given enough information about what to expect or how to treat prolapse. Others said that prolapse was described as a "normal" part of a woman's life.
“I’ve never heard any other woman in my life talk about those things.”
“I hate that people think that it’s normal for this to happen to your body [after childbirth]. And like if you’re my age (in your mid 30s), I would have to live with that for the rest of my life, just because somebody thinks it’s normal. I think that’s completely unacceptable.”
“I didn’t know what it would feel like, or I didn’t know what it would entail, or what the recovery would be like.”
“[My doctor] just basically told me not to lift anything heavy.”
“People make a joke of it. There’s ads on television telling you, ‘don’t worry about it, just buy these black nappies and you’ll be fine.’ You know?”
“I think, you know, it comes back to (and I know it’s a very general view) but it comes back to my view that it’s a male-dominated profession. And, there’s just…there’s just not the consideration…, given to women particularly.”
Prolapse can change how you move your body
With prolapse, daily activities and exercises that felt good in the past might now be uncomfortable. And many people with prolapse are afraid of doing something that could make their symptoms worse.
“I can’t go for a run; I can’t do these things I would do to kind of relieve stress as well. You know…that kind of physical stress relief. I feel like I don’t really have that.”
“I used to love doing dance and it probably would make me feel a little more anxious about kind of going back to something like that.”
“I do have the fear that if I push myself too much I’ll make it worse.”
“No, no exercise, like I literally do nothing, which is desperate, but it’s very hard to find an exercise that is prolapse friendly.”
“There’s loads of things I can’t do around the house, I can’t empty the kitchen bin because…it’s too heavy. I’m not supposed to carry the hoover upstairs but I do and then I pay for it the next day. Even just doing like, more than an hour of housework, I’d be in bits the next day.”
“I love going swimming…but I’d imagine that at some point, I was going to feel self-conscious about it or think that it was getting worse from it and so…why start if you’re going to have to stop?”
“I don’t like going on hikes or anything, unless I am very well prepared with taking a little portable toilet and or she-wee so that I can pee standing up.”
Prolapse can impact your home and work life
Some people have left jobs or avoided certain types of work due to prolapse. Others share how hard it is to do daily chores or care for a small child. It can be really frustrating to feel like options are off the table — or like you shouldn’t do things that you simply have to do in your daily life, like lifting your baby.
“I have a commute…and that means carrying my laptop bag and the walk is maybe 10, 15 minutes both ways so that would…that would affect me.”
“I was thinking of applying for a job in a nursing home nearby. But actually…I wouldn’t be able to lift the patients. Because you’re not meant to lift anything heavy. And you’re not meant to be on your feet for too long either…So, I just decided not to apply for the job.”
“It just makes me so anxious when I feel it getting worse, like if I do something…like last the last few nights my toddler’s teething…now I’m just so anxious thinking…I’m not going to be able to cope because I lift him and I end up in pain.”
“I was very conscious of not being able to lift and not being able to care for him in the same way that I would have wanted to, because I wasn’t able to run round and just…lift him up on things, lift him up for a hug and stuff like that.”
Prolapse can make sex feel different
Dr. Rawlins explains that prolapse can make penetrative sex feel more irritating or painful depending on your pelvic floor health. If the bladder is involved, a finger, toy, or penis could hit on a part of the bladder during penetration, causing pain or urgency.
“I don’t want to say to my husband, no actually I don’t want to have sex, because I can feel stool there, in my vagina and…I don’t want to say that, you know?”
“I wasn’t able to have sex, penetration was just impossible.”
“We’ve held off on doing anything until I can see a specialist because I feel very nervous about it so yeah, that’s affecting that but he’s, like I said very, very understanding.”
Dr. Rawlins often recommends experimenting with different sexual positions to reduce pain with insertion, like hip elevation or hands and knees. “There are body mechanics for everything, including sex,” she shares.
Healing prolapse with pelvic floor PT
When it comes to supporting a patient with prolapse, Dr. Rawlins says, “There’s so much pelvic floor physical therapists can do.” First, she helps patients determine what’s going on with their pelvic floor that could be contributing to their symptoms. Together, she and her patients identify strategies and body mechanics that can reduce strain and pressure on the pelvic organs. Taking a holistic approach, Dr. Rawlins also works with patients on core stability, eating well, easing constipation, and addressing any chronic coughing or breathing trouble. She sometimes advises her patients to use pessaries, prosthetic devices that support vaginal walls and bring relief, which she calls “a sports bra for your vagina.”
"It’s so important not to feel isolated when you’re dealing with prolapse.”
Dr. Rawlins is also doing her part to break the taboo when it comes to prolapse. “I’ll share something like, ‘You know what? I also have pelvic organ prolapse. I got through it and I’m confident you can, too. This is something we can work on together. Prolapse isn’t normal, but it’s really common. I’ve treated so many patients with symptoms like yours and there’s always room for improvement.’” When patients hear this, Dr. Rawlins says, “You can see their chest fall with relief. It’s so important not to feel isolated when you’re dealing with prolapse.”
Trying to figure out where to start? You can do a self-check for pelvic organ prolapse to learn more about your body. You can also make an appointment with a specialist today. At Origin, we’ve helped hundreds of patients improve pelvic organ prolapse with pelvic floor physical therapy, a safe and effective treatment that can eliminate the need for surgery.