Reading time: 4 min.Pelvic pain also known as chronic pelvic pain is one of the most difficult to diagnose conditions in modern urology. This pain can be caused by many different conditions which can be urological, gynaecological, proctological or neurological but can also have psychosomatic roots. Diagnosis of pelvic pain should be multifaceted and involve a specialised team of doctors.
Specific features: nightmare that continues during the day. Symptoms include constant pain in the pelvic area, frequent urination every 5 to 10 minutes or even worse – urge to urinate turns into incontinence. Chronic pelvic pain syndrome is a nightmare for both the patient and the doctor because several different syndromes are joined into this one term and no one really understands clearly who should be treating it. Should it be a urologist, gynaecologist, neurologist, proctologist or an orthopaedic surgeon?
Often treating chronic pelvic pain is a long and meticulous process, joining the efforts of both the patient and a whole team of doctors. It is very important to never give up or despair. Yes, it is true that today we do not yet have a magic pill which can cure all the patients with chronic pelvic pain. But we do have excellent diagnostics possibilities which allow us to pinpoint the exact causes of the pain. Is the pain due to interstitial cystitis, micro bladder or pudendal neuralgia? Once we identify the cause we are half way to successfully treating the condition.
“Can you help me? I doubt it. Just give me a certificate that I am incurable”; “I have added up the number of doctors and the money I spent on them. It turns out I am a very rich woman. Is there a toilet near your office?”; “I am 35 years old and I am an invalid. Can you name any painkillers that I have not tried yet?”; “How many times do I urinate? Let’s see. Once every 15 minutes. Which works out about 50 times a day. And at night? I take my medication, put on a nappy and go to bed.” …
These are just some of the complaints of my patients. The majority of cases have a diagnosis of “Chronic pelvic pain syndrome”. One can safely add “Severe chronic depression” to that diagnosis. In over 12 years of my experience I have not seen a single patient with chronic pelvic pain that did not suffer from depression. More than half start crying when talking about the pain. Nearly all rely on painkillers and antidepressants and dream about just one night of decent sleep...
What is so different about chronic pelvic pain that sets it aside from all the other conditions, even caner, and why even the most experienced doctors are so reluctant to treat it? The answer lies in the name itself: “Chronic pelvic pain syndrome”. It is not a precise diagnosis, it is just a syndrome. The reasons for it are multiple and also unclear. Often the most thorough tests show that everything is fine but the patient has just about lost the will to live due to experiencing constant pain. And following these investigations, any doctor, be it a urologist, gynaecologist or proctologist will have to write in the patient’s medical file that “no pathology was detected”. So, the result is: the pain is there but there is no treatment. The pain persists for months, sometimes years, destroys the patient’s relationships with family members, makes the patient anxious and depressed, and their medical file grows huge.
There are some conditions in medicine that can be diagnosed only by excluding everything else. Interstitial cystitis is one of those conditions.
A lot can be said about interstitial cystitis. One can provide definitions from some European publications and list a number of conditions that should not be confused with interstitial cystitis. But the bottom line is that there remain three sad facts: the diagnosis of interstitial cystitis is made more often that the condition actually occurs. There is no 100% treatment for interstitial cystitis and there are no bacteria that cause it. What is a doctor to do in this situation? And what can the patient do? In Russia (unlike the US and European countries) interstitial cystitis diagnosis is made without bladder biopsy or even without cystoscopy. This is a very bad mistake which also leads to prescription of various infusions of various modern medications which despite of their price will only help in about 20% of all cases. This in turn leads to tons of antibiotics, even though it is well known that in the presence of interstitial cystitis antibiotics should only be prescribed ONCE and not used repeatedly in the absence of any effect.
The problem is that this condition, especially the cause of pain, is left undiagnosed and keeps progressing. The actual condition could actually be pudendal neuralgia, a simple case of radiculopathy, discal hernia, extra pelvic endometriosis etc. Having narrowed down the cause we immediately move away from the term “syndrome” which is in itself very unclear and difficult to treat. And even if it does turn out to be interstitial cystitis we confirm the diagnosis by performing a cystoscopy and bladder biopsy. And then we all sorts of treatment options become available which are very likely going to rid the patient of this chronic pelvic pain.
When a doctor comes face to face with interstitial cystitis there are several things they need to do. The first one is to doubt the diagnosis! To make sure it actually is interstitial cystitis and nothing else by performing a cystoscopy and a bladder biopsy. Might it be a bacterial or fungal infection? Are there any neurological or gynaecological conditions present? The second thing is to rid the patient of the uncontrollable urges to urinate and pain and prevent the bladder from shrinking. Identifying the treatment options that will help a specific patient is a task for a highly qualified team of doctors.
Never give up!
Shrinking of the bladder really is a catastrophe. It is the last stage of interstitial or radiation cystitis. It is difficult to imagine how women manage to live with it. If a normal bladder has the capacity of 300 ml a shrunk bladder holds no more than 50ml of urine. As a result, the patient has to urinate almost constantly and everything that gets processed by the kidneys immediately has to come out. Many patients suffering from this condition live with a life-long catheter. The formal term de-socialization really means the lack of any social interaction and complete inability to participate in sports, go to the theatre or even take one’s child to the zoo.
- Dr Dilanyan, a lady would like to book an appointment with you but she is concerned that she doesn’t smell very nice and she needs to change a pad once an hour.
- Does she suffer from a shrunken bladder?
- She does.
- Book her in please
…- I have a shrunken bladder and I cannot take it anymore. And I don’t want to. She has a tired face with a tint of yellow. In her eyes – impending doom. She just came to see me to do something. And she is only 39.
I look at her medical history. She has had all the possible tests. She has had multiple infusions of various medications into the bladder, including hydrodialation of the bladder which is a procedure that is aimed at stretching the bladder using water. And all with no effect.
- Surgery.
-Surgery? What surgery? – the patient is surprised? What is there to operate on when there is hardly any bladder left?
- The bladder can be reconstructed. Using an isolated bowel segment. Misunderstanding reached its pinnacle at this point.
- So, the urine will go into the bowel and I will be passing it through the rectum?
It is difficult to imagine no doubt. When there is hardly any bladder present a reservoir has to be created in order to collect urine. In these cases, we take a part of iliac bowel and make a sort of a balloon from it. We attach the ureters to it and connect the bottom part of the balloon to the urethra. We then restore the integrity of the intestinal tract so the urine and the content of the bowel are not in contact with each other. Nowadays we carry out this operation laparoscopically without any large incisions. The main disadvantage of a reconstructed bladder is its inability to contract. So, in order to completely empty it the patients have to flex their abdominal muscles after the surgery. But this does not affect their quality of life while constant dampness turns their life into a nightmare.
If interstitial cystitis is poisoning your life book an appointment with me. interdisciplinary approach of our specialised tea, will allow us to establish a precise and correct diagnosis and treat the condition most effectively.
Six months after the surgery. A young woman comes into my office six months after the operation. She has a big smile on her face.
- Do you recognise me doctor?
To be honest I only recognised her because I was expecting her and saw her name on the patient list.
- Hello, come in, how are things with you? How is urination going?
- Well, I have to flex my abdominal muscles of course, but it does not compare with constantly damp pants. I am getting married, would you come to the wedding?
If you require treatment for chronic pelvic pain please contact us. We will arrange admission to hospital on the day of your arrival, will carry out all the necessary test and diagnose you as quickly as possible.
