Pelvic pain impact questionnaire

[janebowering]

Hello all,

I am a PhD student at the University of South Australia. As part of my PhD, I am developing a pelvic pain impact questionnaire for women suffering from all kinds of pelvic pain. I was wondering whether some of you might be able to help me...

I will post the link to the questionnaire once it is complete, but for now I need to know the answer to some basic questions: what activities are affected by your pelvic pain? And what activities do you avoid altogether because of your pelvic pain?

Any help you can give me is great!

Jane

[Hidden]

Hello. In answer to your questions:

Most activities are affected by pelvic pain, it's a matter of readjusting to each one. For example housework, I get my daughters to do certain tasks to help. Sitting and standing for long periods, I alternate between both when at work, if I can, to avoid aggravation.

I can no longer run. I used to be a long distance runner and I avoid long walks now. Instead I do yoga, this has been a big change for me. But I'm learning to adjust to my body's need now and focusing on what I can do rather than can't. Some days are better than others.

[Hidden]

I had to retrain my body to accept all activities, starting with 5 - 20 mins and building up to a time that was acceptable to carry out the task. This has been an ongoing process for the last 12 years, and some things will be for the rest of my life.

Any activity other than walking, standing, lying down, sitting, Stretch exercises, anything that takes me from midline symmetry is banned. And these 5 listed must be done to the level my body tolerates.

It probably sounds like I am trapped inside a dysfunctional body, but I'm quite inventive and enjoy problem solving. I've started a business and work part time hours, I now walk off road. I keep fibding different areas to stretch my ability and time for doing things.

Everything I do, I do a risk assessment for the % pain it will cause. Yes, I do trade pain for activity. I explored all the extremes of my activites so I know what to expect if I over do one. Eg going to an evening concert performance in the city will give me one day of 10+ pain, and 3 of reducing pain. Question is: can I put up with all that pain for 4 days, loose 4 work days.

Life is planned to the tiniest detail to make things like this as comfortable as possible. In 12 years I've only had 2 lots of 8 weeks on prescribed pain killers. I rarelybtakevovervthe counter pain killers either as I much prefer the alternative route.

[Susieloo]

Hi Jane,

All of my daily life is affected by my pelvic pain, from walking to sleeping, sitting to bathing. The level of pain usually goes from bad to worse where it reduces me to tears. I used to love swimming but at present that is a no no. Which is a shame as it uses all your body parts.

Kind regards

Sue

[LookingForHealth]

Sitting - which in turn means travelling as driving is impossible for anything but short journeys and even as a passenger riding in a car bus or plane is uncomfortable. I take a U shaped cushion with me everywhere I go and at home kneel on the floor or lie on a bed. I so miss being able to relax in a chair!

I can't run or walk fast or far. Obviously riding a bicycle or a horse is out, both of which I used to do. I've learnt to move diffently particularly when doing things like hoovering which used to give me a lot of trouble until I learned Tai Chi - the only thing I've found recently that I can enjoy is Qi Gong, and Tai Chi, which are wonderful. The standing position straightens the spine and is really relaxing.

Good luck with your research!

[edythe in reply to LookingForHealth]

For me too, sitting is the main problem, which has repercussions, for example with regard to travelling. Within the city I usually take the tram and stand. In general I do more standing than I have ever done before. Cycling is out of the question; my bike is permanently in the shed (for the moment). When I drive myself - my physiotherapist lives an hour's drive away - I can do that but it's about the limit.

Not being able to sit also means that I can't do a full length concert (last time I had a ticket, I shared it with a friend who came and took over at the interval!) or a film / literature reading / theatre. From time to time I can manage a meal in a restaurant if I have a good day or if take a painkiller in advance. So I usually ask friends to come to my place and/or to go out with me for a walk and go to visit those who live nearby and have a sofa to offer where I can sit with my feet up. In other words my social activities are also considerably affected/restricted.