Chronic pelvic pain
Pain lasting more than six months. Often multifactorial, and often dismissed before anyone looks properly.
Chronic pelvic pain frequently has more than one cause at once. Endometriosis, adenomyosis, pelvic floor muscle spasm, and bladder or bowel involvement can all contribute. Treating only one of them is why some patients improve partially and then plateau.
The vocabulary of pain
The first thing is to ask about the pain itself, properly. All pain is not the same, and it is a great deal more complicated than it looks from outside.
People describe it in very different ways. Different words, different emphasis, sometimes with their hands rather than with words at all. And they describe it in context: when it comes, when it does not, what changes it, how it has moved over the years.
The privilege of having heard thousands of these stories is that you start to learn the vocabulary, and almost the grammar, of pain. Particular descriptions point in particular directions. It is not always clear-cut, but it is rarely uninformative.
Working out why one person's body feels the way it does, and why their experience has been their particular experience, is the puzzle of the job.
They rarely come one at a time
These things almost never exist in isolation. Most people who have endometriosis also have adenomyosis. And because both of them irritate and injure the tissue around them, muscle spasm builds up over the top of both.
Very frequently the muscle spasm feels worse than either of the diseases underneath it. That is one of the main reasons treating a single cause leaves people partly better and then stuck.
Working out which one is doing the most
Each of these has a sound to it: how it affects a particular organ system, how it moves across a cycle, how it changes over the course of a day or with a particular activity. Knowing those patterns is what lets us work out which part is troubling you most, and which parts are quieter than they appear.
That decides the order of the plan. Sometimes there is something we can do early that will make you partly better fairly quickly. Sometimes the sequence is fixed, because the muscle spasm will not settle until the endometriosis underneath it has been dealt with.
There is a second benefit, and it is not a small one. If we can explain why your body is behaving the way it is, you end up with the tools to understand it yourself, and to know what to expect as things change.
When surgery is not the answer
The two most common things we see causing real pain that does not need surgery are adenomyosis and pelvic floor muscle spasm.
For adenomyosis the right answer is sometimes a hysterectomy. Often it is medical instead, and historically that has meant hormonal treatment, some of which works better than others.
Pelvic floor muscle spasm is a very large part of what we see, and we work alongside physical therapists who specialize in the pelvic floor. If the spasm is the main event, operating will generally make it worse rather than better. Sometimes surgery is still needed first, to deal with whatever is driving the spasm, but that is a different situation and it should be a deliberate decision rather than a default.
Mostly it comes down to listening carefully enough to recognize that what you are describing is muscle rather than disease, and then getting you to the person who treats that. Muscle relaxants and other tools can change what the muscles are doing in the meantime, while the physical therapy catches up.
When it isn't us
Sometimes endometriosis and adenomyosis are not the cause, and it is something else entirely.
Doing this work full time means knowing enough about the adjacent problems to tell whether something belongs to us or to somebody else. That is worth more than it sounds, because it means we can explain what is happening, give you a real diagnosis, and get you to the person who can actually treat it.
That is still us helping. It is just not us operating.
If you have been told nothing is wrong
Sometimes the conclusion offered is that the problem is psychiatric. If that genuinely is what is going on then it is real, it needs treating, and saying so is not a dismissal. We very rarely find that it is the case.
Realistically, if you are feeling something and it is affecting your life, there is overwhelmingly a problem. The question is whether we are smart enough to work out what it is and then do something about it.
That is the anxiety of this job, if I am honest about it. Am I smart enough to work this one out. Am I smart enough to make a difference for this person.
I have been fortunate to be taught this work properly, and to have seen enough patients over enough years to have learned a lot of useful ways of reading symptoms. There is still a great deal I do not understand and wish I did, and I hope we understand more of it in time. Where I do not understand something, I will tell you that, and tell you why.
The largest part of this job is not the operating. It is working out the puzzle, and then helping to make it better.