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

For those of us who suffer from cronic pelvic pain, our lives are hard. I find that usually the last person to take care of themselves in the home are the moms (women.) Since starting the program with Dr. E I have learned alot.

First, I am not alone in the suffering of chronic pelvic pain. Second, I have learned that I have to take time to heal myself. This is hard to do when so many people are looking for my time. I have had to take the time. I felt guilty at first, but as I got better I noticed that my life is getting better.

Not taking the time can make the healing process go slower. I never thought the pain would go away. I was amazed when it did. I am no longer running for the bathroom every hour. I have almost no pain durring sex, I have even been able to orgasm during sex. This has never happened before!

I am happy and feel like a huge weight has been lifted. I have had two flare-ups and have had to slow and see where I was lax in my regimen and go back and fix it. It also helps to have a good partner in all this. My husband has been so patient. I hope this writing gets someone to go out and find help. I hope this will make someone take the time to heal and make some time for yourself.

If you want your life to get better and pain to become manageable, you have to stop feeling guilty. Your life will get better and you will be amazed with the results. Have faith in yourself and remember you owe it to yourself to feel better. Happy Thoughts.

Recently, we came across Lisa Martin’s blog post “I Heart Dr. Brookoff.” Dr. Brookoff is an Oncologist and a dedicated and passionate advocate for patients suffering with Interstitial Cystitis. You can read a PDF article from the IC-Network about a talk Dr. Brookoff gave in 1997. His dead-on analysis and understanding of pelvic pain will hopefully finally be heard by the medical community today. Lisa also provided this link to a PDF file of an interview with Dr. Brookoff in 2006.

I’ve really had yet more proof that I can’t just sit back and expect to feel better. Especially when things are going better, I think I can just sit back and stop doing what works to help my symptoms. I think I still have trouble accepting that, for me, this is a chronic condition, not a temporary illness.

I have many of the conditions that lead to pelvic and sexual pain, including irritable bowel syndrome, also called IBS, interstitial cystitis, also called IC, vulvodynia, vestibulitis, just to name a few. In addition, I have fibromyalgia, which also seems to have a connection, and certainly doesn’t help. I am also a food addict/compulsive overeater in recovery for today and lost 55 pounds about nine years ago.

While everyone has their own personal “protocol” that will help them (yes, you can find some relief), I am using some medications, including Lidocaine^TM topically and Elmiron^TM (plus magnesium to help with the IBS), I personally have found diet really affects the burning, raw feeling I experience.

As a food addict, I cannot eat flour, sugar, even artificial sweeteners (for many reasons), at all. But, even within the guidelines of what I can eat, many of the healthiest foods trigger severe symptoms for me, in as short a time as a few hours. Among these foods are brown rice (I use Jasmine, which is still a whole grain), nuts & seeds, carrots & green beans. Unfortunately, sometimes I am less vigilant about both the food and using the Lidocaine.

I had been able to have intercourse for a while, with little discomfort, which I counted as a miracle and blessing. My husband and I have accomodated our sex life for my condition, but the ability to have intercourse is something we both want.

However, I stopped using the Lidocaine and began eating the trigger foods. I have been overworking until all hours of the night.

So, the next time we attempted intercourse, I felt as if a hot poker with sharp knives coming out of it ripped through me. To say the least, it didn’t feel good.

Feeling demoralized and angry at myself, I walked around bow-legged for the rest of the day. I have only been on the Elmiron for a few months, so am not quite sure yet how much it helps, but my IC symptoms do appear to be less severe.

The bottom line is that there is help for me, but I must take an active part in my recovery and be consistent if I want to feel better. I don’t know that I’ll ever be cured, but I surely know from the positive experience I have had that I can have a better quality of intimacy if I do what I know works for me.

I would like to hear your comments and hope you will share your story as well.

A medical website in the UK, Menopause Matters, conducted a study of over 1,000 women and found that 53 per cent of menopausal women experience painful sex.

Those vibrant kids lifting each other and giving their “all” for the team may be starting a spiral of damage to their spines that can eventually lead to chronic pelvic pain. In an article by Jolie Bookspan, M.Ed., PhD for the Healthline blog, she shows clearly how overarching their backs consistently can lead to problems for these young women down the road. “Overarching and sticking out in back is unhealthy for the spine, and is a major overlooked cause of ongoing lower back pain after long standing and ambulating (walking and running, for example),” Dr. Boospan says. To read the entire article, click here.

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 »

I’m Susan Bilheimer, co-creator of the Secret Suffering website … and also a woman who has suffered for years with pelvic and sexual pain. You can read my bio for my background. My story is contained in the “Find Relief from Vulvar/Vaginal Pain,” which you can download when you sign up for the newsletter.

Recently, I’ve had a pretty bad flare-up of my symptoms, about which I’ve posted in Random Thoughts.

I encourage you to share your story in the Healing Room and to share about issues and feelings in Random Thoughts.

We have begun the process of inviting healthcare practitioners to post their experience with pelvic/sexual pain patients and what has worked for them. We think it will be especially interesting for you to hear from researchers in this field, who are working diligently and passionately to help relieve this condition.