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

All pain syndromes have a psychological impact, but for pelvic pain sufferers, there appears to be an even greater impact.  Affecting most aspects of their lives (personal, work, relationships, etc.) most patients suffer in secret until the pain is so intolerable that they cannot NOT seek help.  They avoid discussing it any earlier because patients often feel so alone that they do not know where to turn for effective treatments.  Or, when they do finally seek help, diagnostic tests may come up inconclusive, or they feel dismissed by their physician.  Then, the pain may dissipate providing some relief only to return again and haunt such patients. This continuous cycle can feel very defeating.   

For young adults, the experience can be even further difficult as they are unaware that their pain should be any different, or are too embarrassed to discuss it with their health care provider.  When sex is painful, it can be dismissed as normal or occasional.  Young adults also have difficulty explaining pain experiences to their partners because they do not want to be rejected or seen as “defective.” 

Patients are often referred for psychological treatment long after a prolonged history of pelvic pain, which has (understandably!) lead to depression and anxiety.  Stress is a major contributing factor leading to exacerbated pain levels.  When dealt with effectively, therapy can help to calm the patient and provide some hope for the future, while learning how to cope with their condition.  Once the pain is stabilized to a tolerable level, patients can work through the depressive and anxious symptoms, along with any underlying issues (i.e. sexual abuse, marital problems, etc.) that may be contributing to their experience. 

Working with a multidisciplinary team (PT, OBGYN, Psych, etc.) can help patients to feel supported while they work through both the physical and psychological aspects of their condition and work towards recovery.  The most important thing is that patients receive the help they have so desperately wanted and needed for such an intensely secretive and painful experience.

Secret Suffering is about sex. But it’s not a “sex site.” However, I need to talk about something I’ve never heard anyone mention, including doctors and my own PT. So here goes.

First, let me say that I feel so lucky to have found a PT in Florida who performs pelvic floor physical therapy and has treated IC and sexual pain patients for years. She also treats any kind of chronic and acute pain as all PTs do. She works in a podiatrist’s office, in the back room. Kind of funny to me. All these seniors getting their calluses shaved and their ingrown toenails clipped while my most personal of body parts receive treatment. Though I must admit that my feet have always embarrassed me, due to my extended second toe. But I digress.

It seemed an uncomfortable idea to begin with. Someone, a stranger, touching me “down there.” Actually using her fingers to press on painful trigger points to release them, just like in my shoulder … only in, well, ok, I’ll just say it, in my vagina. Not to mention, I’ve heard that these specialized PTs sometimes use a dilator, which is, to me, just another name for a dildo, raising my anxiety level even higher.

But I’ve been interviewing these specialists for the book and they are all dedicated women passionate about helping other women find long-lasting relief from their pain, and very serious when discussing their work.

And just about every doctor I’ve interviewed, including some of the top experts in the field of pelvic pain, have insisted that pelvic floor physical therapy is an integral part of any successful sexual pain treatment plan.

So, I went to see the PT. The first session lasted two hours. I ended up feeling very comfortable. Plus, the loud whirring of the callous remover in the next room was somehow soothing and reassuring. Of course, I was still fully clothed and all of the treatment still theoretical.

Continue reading Pelvic Floor Physical Therapy (PT) – a close to X-rated and long post »

My mom died of breast cancer in 1981. She was 56 and post-menopausal. When they found it, it had already metastasized to her bones. She fought for six years, but finally lost the battle.

I’m nearly 53 and haven’t had a period for a year and a half, so I’m officially in menopause, myself. My aunt has begged me never, ever to use hormones because of the link with breast cancer. So I have gone through all of this cold turkey. My hot flashes were not so hot. Mood swings and my sexual pain were, and continue to be, the worst part.

Recently, my gynecologist, who I really trust, strongly suggested my using a vaginal estradial insert called Vagifem®. She mentioned the Estring®, which feels something like a diaphragm. I did try that once, but it was very uncomfortable. She explained that the risks involved are far less than other methods. Of course, I realize that no hormones are risk-free. However, she said that my vaginal walls will become thinner and thinner over time, as my estrogen level continues to reduce, which will cause painful friction and increased dryness. So this situation will only add an additional layer of pain to my already overflowing list of conditions (e.g., vestibulitis, IC, vulvodynia).

My dosage is one tablet inserted twice a week and I’m on my third week. OK, I haven’t had sex yet, but I’m amazed that the daily burning has really subsided. I am using Lidocaine® as well, so maybe it’s the combination. But there seems to be a real difference. And, I’m highly allergic to so many things that I thought I’d need a compounded dosage made from some unusual hypoallergenic material. But I’ve had no bad reaction at all.

The thing is, if this were just to have sex, no way would I consider it. But it has reduced the chronic pain I live with, which makes my quality of life better.

DISCLAIMER: I’m absolutely not advocating hormone therapy for anyone else. That is strictly between a patient and a doctor.

However, I feel strongly that I need to share my own experiences in this forum if I am asking you to share as well. In that spirit, I’ll be updating you after I have sex. ☺

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.