The brain's role in pelvic pain

This is a fictional interview with a patient but it is based on the stories of many, many women. It is loosely adapted from an interview on The Health Report between Norman Swan and Dr Tarsha Stanton entitled “The brain’s role in pain”.

Ellen:

When I was in my teens I had trouble inserting tampons. The first time I tried, it hurt and after a few more “goes”, I gave up as it just hurt and didn't feel good.

Trish:

This story might sound familiar for women who have pain with sexual penetration, as pain might have started long ago with trying to use a tampon.

Ellen:

And after that, I just didn't want to try, so I used pads and didn't think too much about it.. until my first attempt to have sex with my boy friend – and it was just the same. It was excruciatingly painful, things locked up and that would be it. That made me feel really bad and embarrassed. There’s everyone out there having great sex! What’s wrong with me I thought? But who do you talk to about embarrassing stuff like this?!

Trish:

Like most people, Ellen doesn't understand what has happened. It’s not just that sex causes pain, pain can also affect the way you feel about sex.

Ellen:

When I tried to have sex, I had pain for a day or so afterwards. It really put me off trying. I started to get really worried anytime Ben (that’s my boyfriend) would give me a cuddle or a kiss, ‘cos I knew that it would just end up in tears again.

Trish;

It’s confusing. How can something that’s meant to be fun, be so painful and just go on getting worse?

Ellen:

It was really beginning to make my quite anxious about Ben even touching me and it affected the way I responded to him. So I went to see my GP who examined me and said that there was nothing to see and that it was in my head. I should have a champagne before sex and chill.

Trish:

Imagine going to the doctor and being told nothing is wrong and that it is in your head. Not knowing what is going on is tough, because it means you think it could be something really bad, something that’s not fixable. That’s when your mind can really make things worse.

Ellen:

I thought that there must be something wrong, that the doctor had missed something and that each time I tried to have sex it was doing more damage. You can’t be in this much pain and there’s nothing wrong! I did have a pelvic ultrasound and it didn't show anything. “Look we’ve done this scan and there is nothing to see”. You would think that it put my mind at rest but not having an explanation for so much pain just made me worry more.

Trish:

Imagine going from doctor to doctor and no one can tell you why you are in so much pain. The problem is that you can’t see pain on a scan. It’s helpful for seeing things that shouldn't be there, like tumours or growths, but not for this sort of pain. Not knowing what is causing pain can generate feelings of nervousness and anxiety that can make things worse.

Ellen:

Well it made me feel quite anxious in general, because it meant that any time my boyfriend gave me a kiss or a cuddle, I would already be thinking of where that was leading, so I would be anxious about being with him. I started to avoid being close.

Trish:

If having sex makes you anxious, you will want to have sex less. What’s more the brain is very good at linking things together. So that if having sex hurts, pretty soon even the thought of having sex will make you feel anxious and experience pain. This can be a vicious cycle, where you get more and more anxious, which makes you feel anxious about future events, like if I can’t have sex, how will I have a baby and will my boyfriend give up on me.

Ellen:

The hardest thing was the toll it took on me mentally. It would play on my mind a lot and started affecting my self-confidence and I didn't want to go out with friends as much. I used to be such a fun-loving person. Here I am only 24 and if I can’t have sex, my life is going to be written off. One of the doctors I saw gave me some vaginal dilators to use and told me to do pelvic floor exercises. Just the look of the dilators scared me and they hurt terribly. And the pelvic floor exercises only gave me shooting pains in the vagina at other times, not just during sex.

Trish:

It’s pretty obvious from Ellen’s experience that pain can affect you emotionally. In fact, feeling anxious or depressed can also increase the pain you feel. Understanding this connection between emotion and pain can be the difference between a doctor who shrugs her/his shoulders at a scan that is normal versus one that can actually help.

So what caused Ellen to look for help? She finally found a doctor who understood the problem and referred her to a pelvic pain physiotherapist at PPSA for help. The physiotherapist was someone who understood about pain and took the time to explain to Ellen that her brain was trying to protect her. The messages coming from the vaginal opening were going up to her brain, which was considering not just those messages but also her past experiences (bad), worst fears (bad!), beliefs (this is going to hurt again!). And so, if on balance, the brain decides that it needs to protect you, you will experience pain. And just like a muscle spasm in the back, the muscles around the vaginal opening will cramp up and shut the vagina – end of story.

Trish: I think that the brain is even more protective of the vagina than it might be of your back for example, because it is such a significant and emotional part of the body leading to “ the crown jewels” (I mean the uterus and the ovaries that are your reproductive centre).

Ellen:

In my mind, I was experiencing pain and I thought that something had been damaged. But the physiotherapist explained that pain can equal damage, like if you burn yourself, but in this sort of persistent pain, it isn’t the case. It was a real relief to understand that – a real weight off my mind and it made me feel a whole lot better. Then she explained that this fear of pain makes the muscles around the vagina get tighter and that just having these tight muscles can cause pain – she made me tense my fist and I could see how bad my hand looked and how it started hurting if I didn't relax it.

Trish:

This might seem strange. It’s surprising to think that just knowing more about something can change the way you feel.

Ellen:

This was an interesting experience for me - I started to notice how I was holding my vagina tight all the time, during the day as well. I noticed other tight bits too, like I clench my teeth. I started telling myself that I could let it go. That was really a turning point. The physio trained me to breathe into my belly and to stay calm and relax my muscles to touch. It took a little while but I can have intercourse now without it hurting. I don't get anxious about it either. In fact, just the opposite. I’ve developed confidence in my body again and that is having a positive impact on all sorts of things, like my relationship with my boyfriend and my self-confidence. I don't have these existential fears any more. It’s not always completely pain free but I know what to do, I deep breathe and say to myself “I’m sensitive but I’m safe” and the pain settles down.

Trish:

Ellen was open to these ideas about pain and the brain and it led her down a path to recovery.