Beth’s Story: Ehlers Danlos Syndrome (EDS) and 12 Facts about Everyone’s Vaginal Prolapse
by Alyce Adams, RN BSN October 28, 2021 Leave a Comment
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Beth* is a Kegel Queen member who suffers from Ehlers Danlos Syndrome (EDS), an inherited connective tissue disorder.
Six weeks after joining the Kegel Queen Program, Beth wrote to me. Lightly edited for clarity and privacy, this is Beth’s story.
I was able to reverse my stage 3–4 prolapses (both cystocele [prolapsed bladder] and rectocele [prolapsed rectum]) with a combination of kegels, breathing exercises, and posture work.
I caught bronchitis [two and a half months ago]. It turned into an uncontrollable and deep cough. For the first time in my life, I was leaking pee when I coughed. I coughed so hard I nearly vomited or collapsed. And at some point, all that coughing triggered a major prolapse. I started feeling the prolapse protrude outside of my vagina and I went to my gynecologist. She said I needed surgery. I had not received any education about the possibility of prolapse, nor the need to do kegels. So I was really shocked to find myself diagnosed with stage 3 or 4 rectocele and cystocele. I asked to have a second opinion, and that gynecologist also said that I needed surgery, but that my case was complicated because I’m only 51 and this type of severe prolapse usually happens later in life. She referred me to a urogynecologist, a specialist who only deals with prolapse and bladder issues. I couldn’t get an appointment for 6 weeks.
This is the point in time where I signed up for the Kegel Queen program. And I am really glad that I did.
At that point in time, I didn’t know if I could live with the pain and discomfort from the prolapse. I felt [menstrual-like] pains all the time and it seemed these were coming from the stretching and sagging of my pelvic organs. I felt swollen from the pressure they caused on my pubic area. I was sore and uncomfortable with the prolapse protruding out of me too. And I noticed that any constipation became extremely uncomfortable. My bowels were no longer where they were supposed to be, and the prolapse meant I needed to take magnesium supplements or stool softeners every day.
I wanted surgery… even after reading all of your materials and your research.
But I dug in and I really valued the research materials that you sent, and the video and audio materials. I started doing my Kegels every day. I also did other research based on the Katy Bowman links you provided on breathing and posture. This was extremely helpful. I think it was a combination of the breathing, posture, and some yoga moves (child’s pose) that helped my pelvic organs move back up to a higher position. For several weeks, I found that I could ease the pressure and pain in my pelvic area by breathing and yoga moves to get my pelvis higher than my chest. But during that time, any exertion of lifting or exercise would cause the prolapse discomfort to return.
I have a connective tissue disorder called Ehlers Danlos Syndrome (EDS). I didn’t know that prolapse was more likely because of this disease. But I found out from my own research that it is more likely for women like me with EDS.
By the time my appointment with the surgeon urogynecologist came around, I realized I was feeling much much better. I was not having any pain or discomfort from the prolapse. I was managing constipation and bowel movements with magnesium supplements. And the kegels had really strengthened my pelvic floor.
The urogynecologist measured my prolapse. It was only at stage 2 rectocele. She couldn’t see a cystocele at all. Something had worked.
I could no longer feel the prolapse. I felt normal again. I got a pessary, just in case I have a problem in the future. But I feel this incredible sense of relief from the information you provided and the empowerment I received from trying some powerful forms of strengthening and positioning of my organs.
I am outraged at the gynecology/women’s health field. The fact that they are not giving women information on prolapse and kegels much earlier in our lives is a crime. And the fact that they are telling women that prolapse is irreversible is also untrue. My prolapse definitely reversed. It is not gone but it is not something I think about anymore. I will keep doing my kegels and keep taking magnesium and this is the simplest, and best outcome I could hope for.
Thank you Kegel Queen. You are smart, ethical, and you are saving women like me thousands of dollars and the pain and agony of a major surgery.
Beth in Virginia
Beth’s story illustrates a number of important points that are relevant to anyone who suffers with pelvic organ prolapse.
1. Strong pressure against the pelvic floor can initiate prolapse and urinary incontinence.
The pelvic floor is a hammock of muscle and connective tissue between your tailbone and your pubic bone. Pressure from the inside of the body can stress the pelvic floor and lead to pelvic organ prolapse. For Beth, that pressure was from a bad cough. Pressure against the pelvic floor can also happen with straining on the toilet, vomiting, heavy lifting (especially with bad form), or certain types of exercise.
2. Connective tissue is what holds your organs in place.
There’s connective tissue throughout your body. Its job is to connect body parts to each other and provide structure to muscles and organs. Your tendons and ligaments are made of connective tissue. When connective tissue isn’t working right, literally hundreds of different problems can occur in the body. For Beth, EDS — an inherited connective tissue disorder — probably contributed to prolapse by weakening the connective tissue supporting her bladder and rectum.
3. For many women, prolapse can be improved.
Again and again, women in my program tell me their prolapse has improved. Beth’s story is just one example.
4. Most doctors don’t believe prolapse can be improved.
Beth says, “The fact that they are telling women that prolapse is irreversible is also untrue.” Beth is right. This is untrue. But doctors are saying this to women every single day.
5. Doctors typically offer surgery as the only possible prolapse treatment.
Beth heard this from two different gynecologists. This is typical. Most doctors don’t offer non-surgical options for managing prolapse. They aren’t aware of alternatives, or they don’t believe they work, or they prefer to do surgery rather than help you with lower-cost fitting and care of a pessary.
6. Doctors typically won’t tell you about lifestyle approaches that can help prevent prolapse from getting worse.
Beth didn’t hear about this from her doctors. The standard medical approach for a mild prolapse is to wait for it to get worse, then do surgery.
7. The best prolapse care includes a multifaceted approach, not just one kind of treatment.
Again, Beth’s doctors missed the boat on this one. Most doctors are not well educated about lifestyle-based approaches to managing prolapse, and they don’t take the time to teach patients what they do know.
8. If you are going to have prolapse surgery, you should see a urogynecologist, not your regular GYN.
Here’s where Beth’s doctors got it right. For any surgery, you want a surgeon who is an experienced specialist in the procedure you’re planning. All gynecologists are trained as surgeons, but urogynecologists are GYNs who have completed two to three years of additional training in female pelvic medicine, especially this exact type of surgery. Don’t forget, though — surgery is not the only option.
9. A pessary is a great tool.
Beth got a pessary with the help of her urogynecologist. This is the one non-surgical alternative every doctor is familiar with. Pessary fitting and care is a very popular topic on our Kegel Queen live Q & A and members’ website; accurate and detailed information is hard to find elsewhere. It can be hard to get complete information about pessaries from doctors, because many doctors are not skilled or enthusiastic pessary care providers. But if you’re interested in using a pessary to help with prolapse, it’s well worth the effort to educate yourself and make it happen. Pessaries are inexpensive, low risk, and reversible, and they can be life changing for women.
10. Prolapse is a secret epidemic.
In the US, one in five women will have surgery for pelvic organ prolapse or urinary incontinence by age 80. One in five. But has anyone ever talked with you about prolapse? No one had talked with Beth.
11. Preventive pelvic health is an even bigger secret.
Even the people who suffer with prolapse, and the doctors who treat them, aren’t well educated about how to prevent prolapse. Beth says, “The fact that they are not giving women information on prolapse and kegels much earlier in our lives is a crime.”
12. The emotional impact of prolapse, and of treating prolapse, is enormous.
Prolapse can make women feel embarrassed, broken, helpless, and afraid. Beth writes about the “incredible sense of relief” and “empowerment” she felt once she had the information and tools she needed to address her prolapse. I’ve seen this over and over, like Kegel Queen member Chris from the UK, who wrote, “I feel horrible…I feel sick…I feel disgusting…I’m tearful all the time.”
Then after six weeks of kegels, Chris wrote, “I don’t feel the prolapse anymore and the heavy feeling only occasionally…I now have inner strength and have the belief that if I work hard enough at something/anything, I WILL succeed… it has given me the positive feeling that everything is going to be ok.”
I hope Beth’s story, and the lessons we can learn from it, have been helpful to you. To find out more about non-surgical prolapse options, check out my free webinar: How to Beat Prolapse Surgery and Stay Out of Adult Diapers: These 11 Tricks May Surprise You (and Amaze Your Doctor!).
*Name changed for privacy.
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