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If you’re facing a diagnosis of bladder cancer or a similar health concern, sex may be the last thing on your mind.

However, your sex life after a cystectomy (bladder removal surgery) should be a major consideration for any doctor who recommends it.

Sadly, research shows that’s much more likely to be true for men than it is for women. In fact – although sexual function after bladder removal is ‘routinely considered’ for male patients – surgeons in one study discussed complications that could affect pelvic health and sexual function with just 13% of female patients. Worse, the medical counseling those women got after surgery ignored the topic of sex altogether.

A group of urologists from Wake Forest Baptist Medical Center in North Carolina is fighting to close that gender gap. Their recommendations – based on a review of more than 70 sources of scientific data – were recently published in the Sexual Medicine Reviews.

One of their findings is cause for celebration; survival rates after a cystectomy are rising. But women who beat the odds still discover that, when it comes to post-surgical quality of life, sex can be difficult and painful for a number of reasons (medically termed dyspareunia). Pelvic Organ Prolapse is a common complication; and a radical cystectomy often involves a section of the vagina. Ovaries may also be removed, leading to a sudden loss of estrogen. The bladder removal itself requires a medical decision about the best way to permanently divert the flow of urine.

Needless to say, cystectomy has a profound effect on a woman’s sex life. Patient complaints range from problems with lubrication and orgasm to painful sex. Across various studies, 30-60% of female patients report a decrease in sexual satisfaction after surgery; and many of them stop having sex altogether.

With the right intervention, it’s possible for women and their partners to adjust and return to a pleasurable sex life. But the researchers say that intervention should start before surgery, with doctors prioritizing sexual satisfaction equally for men and women as part of the bigger picture of post-surgical quality of life.

If your doctor has recommended a cystectomy, make sure the surgical checklist includes these three important things:

Pre-surgical discussion of all the risks and side effects. You need to know what you’re facing, and your doctor needs to know your goals for sexual function before you decide together on the best treatment plan.

Full consideration of alternative surgeries. In some cases, robotic surgery or a simple cystectomy may be just as effective as a radical cystectomy while significantly lowering the risk of complications.

Comprehensive follow up, including evaluation and treatment of sexual or urinary complications that affect quality of life. That may include pelvic floor physical therapy.

Every cystectomy case is different; and the best chance of survival is always the top priority. But there is more to life than survival; make sure your medical team supports your entire quality of life, including your sex life.

References:

Citation – Voight M., Hemal K., Matthews C. 2019. Influence of Simple and Radical Cystectomy on Sexual Function and Pelvic Organ Prolapse in Female Patients: A Scoping Review of the Literature. Sexual Medicine Reviews 7:3 408-15.

What Our Patients Have to Say

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Testimonial by P.M.

I was hopeful but frankly skeptical when the doctor treating me for Interstitial Cystitis recommended that I go to Heather for physical therapy. Medication and diet helped control my IC symptoms, but I had never heard of physical therapy being used to treat IC. The education and treatment I received from Heather was a revelation. She explained that the pain I experienced with IC had helped create a cycle of muscle guarding which affected the entire pelvic area. I had no idea of the amount of tension being held there. No wonder my husband and I had not been able to have sexual intercourse for years!

Read more: Testimonial by P.M.

Testimonial by T.H.

I started seeing Heather in October 2014. For more than two years, I had been suffering from painful urinary tract infection type symptoms after my bartholins gland surgery which included constant burning and urinary frequency sensation that led to more and more painful intercourse. I had made multiple visits to internist, obgyn and urologist's offices, went through a range of treatment with UTI and bladder frequency medication that included antibiotics, vesicare, estrogen cream, but nothing worked.

Read more: Testimonial by T.H.

Testimonial by T.H.

I started seeing Heather in October 2014. For more than two years, I had been suffering from painful urinary tract infection type symptoms after my bartholins gland surgery which included constant burning and urinary frequency sensation that led to more and more painful intercourse. I had made multiple visits to internist, obgyn and urologist's offices, went through a range of treatment with UTI and bladder frequency medication that included antibiotics, vesicare, estrogen cream, but nothing worked.

Read more: Testimonial by T.H.

Testimonial by R.H.

No one could tell me why I was having pain during sex--sharp pain, not just uncomfortable, pain. I was referred to Heather Jeffcoat after researching several different options. I had seen a specialist who told me physical therapy would not help and my only option was surgery. I really didn't want to go that route, so when we got a referral, I decided to try it--it can't hurt, I thought. I am so glad I did. She diagnosed the problem right away, which was a relief in itself.

To know why I was having pain eased my mind immensely. And to hear that she could fix it without surgery was another relief. She said she could fix the problem in 6 weeks. I think it was actually 4 for me. She was very methodical, and treated me as an intelligent human being capable of participating in my own recovery. I would absolutely recommend her to anyone. She did not try to prolong my session numbers, she worked hard to accommodate my schedule (and the fact that I had to bring a baby to sessions), and she was completely honest the entire time. It is so hard to find someone with these characteristics, much less a professional who is so good at what she does. She has my highest respect.

-- R.H.

Testimonial by Fritzette H.

I went to Heather after the birth of my third child. It was lucky, really, that I was referred to her, because my doctor had referred me to a surgeon for a possible hysterectomy or pelvic wall rebuild. Thankfully, I went to Heather before undergoing either surgery, she was able to fix the problem. She has studied extensively in women's health--even written a book about it--and was able to diagnose my problem, suggest a course of treatment (6 weeks), and then follow through with said treatment. By the end, as she said, I was as good as gold. Boy, was it worth it! Though uncomfortable to talk about, much less write about, it is worth getting the word out there. If you have painful intercourse, especially after birth or other trauma, the treatment may be as simple as Physical Therapy (with Heather, of course). I highly recommend her.

-- Fritzette H., 3/24/16 via Yelp!

Testimonial by R.H.

No one could tell me why I was having pain during sex--sharp pain, not just uncomfortable, pain. I was referred to Heather Jeffcoat after researching several different options. I had seen a specialist who told me physical therapy would not help and my only option was surgery. I really didn't want to go that route, so when we got a referral, I decided to try it--it can't hurt, I thought. I am so glad I did. She diagnosed the problem right away, which was a relief in itself.

To know why I was having pain eased my mind immensely. And to hear that she could fix it without surgery was another relief. She said she could fix the problem in 6 weeks. I think it was actually 4 for me. She was very methodical, and treated me as an intelligent human being capable of participating in my own recovery. I would absolutely recommend her to anyone. She did not try to prolong my session numbers, she worked hard to accommodate my schedule (and the fact that I had to bring a baby to sessions), and she was completely honest the entire time. It is so hard to find someone with these characteristics, much less a professional who is so good at what she does. She has my highest respect.

-- R.H.

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