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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 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 M.N., age 28

A personal journey and testimonial from one of my patients:

I was diagnosed with vaginismus 4 years ago. I never heard of such medical condition until after I got married. At first my husband and I didn't know what to do, we didn't know what the issues were or how to overcome it. Being born and raised in Armenia and being Christian I wasn't that open about talking to sex with others and so it wasn't easy to seek help. But eventually I went to an Ob-Gyn and luckily she knew about the medical condition (not many doctors know). She referred me to a physical therapist and I couldn't believe it and thought it's something I can handle myself. I ordered a kit from vaginismus.com and started practicing with dilators. There was some small progress but wasn't much helpful.

Read more: Testimonial by M.N., age 28

Testimonial by R.M., Age 40

I can’t speak highly enough of the theapists at Femina Physical Therapy and how much they have helped me grow, discover, and love my body. I had had painful sex for my entire life, and didn’t know that there was anything that could be done about it. It was at the point where my husband and I were not having sex for MONTHs, because it was just too frustrating, and I hated feeling like I was the ONLY woman out there who had this problem, especially at my age. I finally brought it up to my doctor because I was turning 40 and my husband and I were barely having enough sex to conceive. And she brought up pelvic floor, PT. I didn’t even know this was a “thing”.

Read more: Testimonial by R.M., Age 40

Testimonial by Rosanna R., age 35

Heather has affected my life in the MOST POSITIVE way and I am forever grateful. My husband refers to her as the "sex doctor" so you can only imagine how happy he is with my therapy outcome.

After the birth of my son I suffered from "Vaginismus", however, at the time I just thought I was broken. My "broken vagina" affected me physically but it was an emotional struggle as well. Many women in my life also suffered with pain from sex after their babies were born so I knew I wasn't alone. They told me they "just got used to it" but I couldn't see myself living that way.

Sex wasn't just painful, it was literally impossible - IT DIDNT FIT!

Read more: Testimonial by Rosanna R.,...

Testimonial by A.M.

Months after giving birth, it was difficult for me to go from a sitting or lying position up to a full standing position without feeling that I had to remain hunched over until a bit of time had passed to get fully upright. However, after taking Heather’s course, I learned exercises to get my body back to normal. She also showed me correct ways to lift and carry my son as well as put him in/take him out of the carseat and stroller. This class was really beneficial and Heather is a wonderful teacher who made me feel very comfortable.

-- A.M.

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!

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