Secret Suffering - A resource community for women who experience pelvic and sexual pain

Just found this great article confirming why we need to raise our voices about sexual pain. It’s called, “Painful Sex Still a Painful Secret
Many Women See Up to Five Doctors Before Diagnosis.” It’s pretty cool that it was an ABC News article. You don’t get more mainstream than that! Thank you to Lauren Cox.

Happy New Year to you all! At 1:30 this morning, we closed out the Sexual Pain and Relationships survey. Hundreds of women and their partners (primarily men) responded. Thank you to everyone who contributed. We will post updates to the survey over the next few months as we analyze them. You can find these updates on the Survey page.

Someone sent me the latest newsletter from the ICHelp website (great organization), which links to an article in Redbook magazine about sexual and pelvic pain.

It’s called Your (Very Personal) Health at 20 30 40 50. Here’s quote from the article: “From painful intercourse (which strikes women even in their 20s) to unplanned pregnancy (which happens—surprise!—to about 40 percent of women who conceive in their 40s), a wide array of down-there concerns affect women in every decade. In fact, one third of us will be treated for a pelvic-health disorder by age 60, according to a report from the National Women’s Health Resource Center (NWHRC), and experts suspect that many more of us are too embarrassed to tell our doctors about such concerns—and so suffer unnecessarily.”

I am so happy to see this. I’d love to read your comments about this article. In fact, I just posted on the article and I urge everyone to comment there as well! The more we raise our voice in the mainstream media, the more attention this subject will get. Again - here is the link: Redbook Magazine Article.

Recently, Dr. E was the keynote speaker at a pain conference in Panama City. He was extremely well received. Here are comments from a few of the participants:

Finally I had the time to write. First of all, my personal thanks for your excellent lectures. I enjoyed each one very much and be aasured that your words of wisdom won’t be forgotten.

Dr. Osvaldo Reyes

Ernesto Alvarez Durnov MD

Roxana

Note: I’ve posted this both in the Editor’s Corner and Random Thoughts.

My Interstitial Cystitis has now interfered with my relationship with my son. It’s funny, when I started on this path to writing our book, I thought the only relationships affected by pelvic pain were sexual. Then I interviewed women who described issues with their children. Horrible, I thought. So sad. But I couldn’t relate. Now, I feel the pain of that.

One of my symptoms is a chronic need to, well, pee. I’d like to be more politically correct, but I’m just not going to write urinate two hundred times in this post. And now that I drink a lot more water, which, by the way, has made an improvement in my condition, I need to pee just as much, but thankfully, it rarely burns and stings like it used to. (I’ve written about drinking water in my post, Water - The Healing Elixer.)

My son, who is nearly 17, is in the school’s marching band. Sam and I have been going through a rough patch, which is very painful. He’s moved up the street with his dad. As the parent who has done most of the raising, I am pretty devastated by the situation. My son and I have always been so close. It’s not only humiliating that he’s not here all the time (”what kind of mother must she be for her son to move to his father’s house?”), but hits at the core of my being because he’s my baby (hmmmm, you don’t suppose that might be part of the problem?). “For goodness sakes,” says my husband, “he’s not dead, not a runaway, just up the street with his father. It’s normal for a teen to want to get close to his dad.”

So, in an effort to be close to Sam, instead of driving, I decided to go with the band last weekend to their competition in Inverness, FL, about a four hour drive on the bus. The bus left at 6 a.m. and we were scheduled to get back about 3:30 a.m. the next day. His dad was also going on the bus. He and I are sometimes good friends (it’s complicated), but of late, I am completely jealous of the fact that he has my son and has immersed himself in the band, where all the kids and the instructors find him cool, making him oh, so popular. I needed to do something to compete with his “Band-ing” with Sam. Thus, I had the additional thrill of spending the next 24 hours interacting with my ex-husband.

Sam had informed me numerous times that going to the bathroom on the bus was “not allowed.” But his dad said that was not true. And certainly, I thought it wasn’t possible that no one went on the bus. Still, when I showed up at 6, I had a kernal of anxiety balling up in my stomach. I needed to confirm the bathroom edict. So I asked two of the parents who are “regulars.” And indeed, my worst fear was realized. “Oh no,” they both blurted out in unison, looking horrified. The fatherly one went on, “you can’t go to the bathroom. Once that toilet is flushed, even if it’s ‘#1,’ it’s too awful. The stench. Oh no, you just can’t.”

Now, I was stuck. My anxiety grew from a kernel to a watermelon. I know this isn’t good, but I forced myself to pee three times before boarding, and was on the verge of a panic attack the whole trip up. They did stop twice, once for lunch (over an hour, thank goodness). But with IC, you just never know when the urge will strike again.

I was afraid to drink water.

At the competition, during the waiting times, the bathroom was five minutes away. Three stalls, 10 bands, hundreds of girls and female chaparones.

I think the very worst part was when we boarded the bus to go home. One of the mothers in charge announced that the driver would not be stopping on the trip back. I freaked out. It was embarrassing. They looked at me like I was from Mars. I just couldn’t bring myself to explain that I had IC, so I simply said … menopause. Luckily, they changed their minds and we stopped halfway.

But the trip wasn’t a complete disaster because my son was actually glad that I was there. He didn’t say it, but his demeanor showed it. He joked with me right in front of his friends. Let me take pictures and, once in a while, I even detected a smile when he glanced my way.

So was it worth the anxiety? Absolutely. Anything that brings me closer to Sam is worth the effort. And the fact is, all that worrying was for naught because it worked out fine. Still, I cherish my freedom to choose. So the next road trip … I’ll be taking my car and stopping at every rest stop I can find.

I just want to thank all of you who have had the willingness to be the first to get our site started. I know how much courage it takes to reveal such personal stories. Please encourage anyone who has suffered to share their thoughts. In addition, if you know any experts, please ask them to write me so we can have them post in our Expert’s Corner. And always feel free to call (888) 241-1461 or use our contact form to get in touch with me.

I’m very excited to be able to extend this welcome to you. I first met Dr. E. in January, 2007, when I decided to write a book about women’s sexual pain and how it affected their relationships.  I was referred to the doctor as someone who might be interested in such a book. The book I envisioned was just a little book, a slim volume of women’s stories. As you can see, our collaboration has evolved into something much larger and the book we are writing (also called Secret Suffering) is now going to be a much, much better (and far heftier) book than I ever could have imagined! I’ve shared some of my own story in the Healing Room. I look forward to sharing this community with you and hope you find the healing you seek.

Read about Dr. E’s background

Sandy, my nurse, calls the comfortably cushioned high-back chair next to my desk the “Memory and Crying Chair.” In our practice, we usually meet with patients for about two hours on their first visit. We have learned that we have to do this in order to truly begin to help them figure out what is wrong and begin to “connect the dots.” By the time women find us, they have usually been through the wringer with doctor after doctor, endless procedures and tests, told that it’s all in their head, feeling worse than ever, completely demoralized and hopeless. They fear that we’ll just put them through the cookie cutter of testing and procedures, resulting in more of the same frustrations and disappointments they’ve already experienced.

We don’t.

Continue reading Welcome from Dr. E »