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.

My symptoms began five years ago after a very traumatic vaginal birth of my first son. Repair that was done during after the birth left me with an extra flap of skin that would get irritated during intercourse. This continued into many issues. I also was diagnosed with Hypothyroid around the same time.

My health continued to spiral downwards and with it my relationships with my children and husband. It affected not just me but them. Then I was diagnosed after the birth of my second son three years later with chronic inflammatory disease, this is an autoimmune disease. Which one, they can’t figure out. But they did figure out that it started with my immune system attacking my thyroid and for some reason has not stopped.

I have learned to manage my joint and fatigue on my own. But suffered from what I thought we bacterial infections and vaginal infections. They were treated that way.  Because of the autoimmune disease my doctors just assumed I was suffering reoccurring infections and most of the time the test came up positive but I still suffered from pain on a regular basis. This began to heavily affect my marriage in the last two years.

Continue reading Suffering Quietly »

I’ve been thinking about how many women (and men) have talked about how only intercourse is “real” sex and “real” intimacy. But I, personally, don’t believe that. Tonight, it ocurred to me that this is somewhat like my experience having a baby.

I wanted “natural” childbirth. I had a midwife and was determined to experience every single moment of the delightful labor pains that I would joyously embrace. No medication, no epidural, no nothin’ but me and my baby working it out together.

Then, about six weeks from birth day, I find out that Sam is breech. Well, no, this is not acceptable. They do a “version” (try to turn him using an ultrasound machine to watch). Three doctors and one stubborn kid. You can imagine who won. Just as an aside, they managed to push him half way there. They stood back with a smug smile on their faces. I swear I’ll never forget it. And then, just like that, he popped right back up. With a disgusted wave of the hand, they just said that was that … and walked out. Seventeen years have passed and I remember it like it just happened.

So, we had to schedule a c-section. I was devastated. The only “right” way to give birth was natural. That’s the message I had received. That’s what I wanted.

We picked a Friday. We went in, they gave me a very painful shot. And out Sam came. Now, don’t get me wrong, there were other problems associated with the c-section. But I never felt a labor pain.

Afterwards, when speaking with other mothers, when the subject came up, the moms who had given birth naturally seemed to feel that it was more “right.” I truly believe it was not just in my head. And truth be told, I felt that way too.

But then, someone finally said - “Who cares how you have the baby, as long as it is healthy?”

I still feel there is a judgement around about those who have children naturally vs. those who don’t. Subtle, but there. Just my opinion.

Anyway, that is how I feel about intercourse. For heterosexual women, it’s not the only real way to have sex as far as I’m concerned. There are vibrators, fingers, tongues, and whatever else two people can figure out to have fun and make them closer.

Does my husband feel deprived sometimes because we can’t have intercourse. Yes. But that sure as hell doesn’t mean I have to be in pain to keep him happy. And when we experiment and make each other have an orgasm in other ways, we feel very intimate. And he’s over it. Certainly a lot faster than the time it would take me to recover if I am flaring up and we have intercourse!

Sometimes, I’m well enough to have intercourse, and I’ll wait until he is close to finishing and then it’s ok for a short time. But even if not, we are still able to have a full sexual experience.

The orgasm, the closeness, the intimacy, the bonding … making each other feel good - After all, isn’t that the point?

However, I think this is like having a baby. Some people thinkg

I have been married for 30 years. I have suffered with chronic cystitus for all 30 years. I never had problems with intercourse until about 3 years ago. All of a sudden the pain during and after is incredible. Pain upon penetration is so bad and then when we would finally succeed at that, the burning begins and burns for hours afterwards.  

I never related the cystitus with the intercourse pain until after reading stories in this site.

I went to the doctor twice during the last several years to find why I started having pain. I thought maybe it was due to going thru menopause.

The doctors would run tests, but when nothing showed up in the tests, it was like I was just forgotten and the task to finding the answer to my problem stopped.

It has really started to affect my relationship with my husband the last several months. For the longest time, my husband was understanding and supportive and finally just quit asking for it. I felt really guilty about it.  

I’m even afraid my husband my have gone and had an affair. It’s been a rough month.

Thanks for listening!    

Sam laughed. In fact, he giggled. And I wanted to cry. I was sad because I haven’t heard Sam laugh in so long. And sad because it was with his father, with whom I’m not laughing and to whom I’m no longer married. Don’t get me wrong, Sam’s dad and I get along … I just wanted my share of that bonding laughter with my son.

There’s a point to this that has to do with chronic pelvic pain and relationships. But bear with me a moment.

Sam was at his dad’s house. I called and his dad handed him the phone. I heard muffled laughter. And whatever they were doing, the phone had loud difficulty traveling from father to son. When Sam finally received it, the giggling continued … briefly. And then, a somber “hi.” With an implied, “what?” Followed by a silent (but I could hear it in my mind) sigh.

Sam is nearly 17. Perhaps that explains the lack of laughter overall. And I’m his mother, which probably explains it even more.

I asked what was so funny. “Nuthin.” Clearly sullen. I wanted to laugh along with him. It just didn’t feel fair. I raised him. He owes me (ok, ok, I’m a Jewish mother, forgive me). And, while hearing his big-little kid giggle was music to my ears, still my throat tightened.

After I got off the phone, I realized how little I laugh now. I just haven’t felt well probably most of my nearly 53 years for one or another reason, depending on the decade. But, still, my attitude was always that laughter was the only way to get through the dark times, to get through life at all with any measure of sanity.

In fact, I raised Sam with that philosophy since he was about, oh, two years old. Integrity and humor were two of the biggest watchwords in my home. As for humor, Groucho, Abbott and Costello, and Borscht Belt comedians. Too early with Sam, maybe, we moved on to political satirists and those who find humor in the mundane.

My combined symptoms and conditions that lead to sexual pain, which have led to this site and the book I am writing with Dr. E., are so serious. And I didn’t realize how they have robbed me of more than sexual satisfaction. They are robbing me of what I consider my life force … that ability to laugh, to find humor in the dark corners.

I have fibromyalgia, irritable bowel, interstitial cystitis, vulvodynia, vestibulitis, probably a larger list if I think hard enough. Oh yes, and migraines. I’ve learned more and more about how all of these conditions contribute to one big mess called chronic pelvic pain, which in turn contributes to and exacerbates sexual pain. Which is not funny at all.

And this has translated into a very unfunny, complaining, critical attitude that certainly doesn’t invite my son to feel gleeful around me (nor my husband, I suppose). It seems all my interactions with the people I love, not just my husband, seem to be colored by my symptoms.

So I was trying to remember the last time I laughed so hard that, if you’ll excuse the expression, I nearly “pee’d my pants,” There have been a few in the past year, but I believe, not enough. Study after study show the healing power of laughter. In fact, there is actually a foundation called, “Laughter Heals” that is all about this very subject.

My husband is a very funny man, in a wry, dry sort of witty way. We’ve had some rocky times over the past seven years since we met. Lots. And my sexual problems and indescribable pain at times certainly haven’t helped. But I cannot tell you how much his humor as we walk along the path together have helped our marriage.

After 9/11, I was a basket case for about six months, as were many of us, walking around feeling hollow and scared. I live in Florida, a far cry from the center of the horror, but emotionally decimated nonetheless. One day, much later, a comic shared his own pain with humor … and I laughed out loud with relief. And I remembered thinking, “Thank God for the comedians. Where would we be without them in the world of today?”

Tonight, I bought tickets for Sam and I to see a comedian we love. For a few hours, my pain will take a back seat. I’ll spend two hours hearing Sam’s laughter. And while I’m sure I’ll have tears streaming down my face, I know it will be with joy.

**************

What are your thoughts?

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.

The website - www.allheadlinenews.com just published an article from Christin Veasley of the National Vulvodynia Association (NVA). People have a lot of misconceptions about vulvodynia, according to the article. To quote the article: “The cause is not associated to sex, the NVA says, but rather an injury to, or irritation of, the nerves that innervate the vulva; infection or trauma in the vulva; genetic factors; hypersensitivity to yeast; or spasms of the muscles that support the pelvic organs.” They also say that vulvodynia is not caused by a sexually transmitted disease.

According to the article, MedicalNews Today recommended a number of self-care measures, such as avoiding tight-fitting garments. Click here to read the full article.