Chronic Pelvic Ache, Leg, lower back ache

Signs and symptoms
1

Hi, had this chronic pelvic ache for over a year. Had a lot tested already but no answers and still have the constant ache in my pelvis, legs and lower back.

I have since been referred to a Gynaecologist, who has said I may have IBS, but I really do not think it is that.

The only relief I get from the ache is sat on the toilet, not actually doing anything but just sitting there is a relief or sat in a bath helps.

Sitting down aggrivates the ache, any form of pressure there.

I have had an ultra sound scan, swabs taken, smear test etc and fortunately all are clear.

I have been told I can have a Laproscopy later this year if the ache effects my life. Problem is many people I have read about that have this, alo find no answers. So not only am I scared to have that procedure done, it doesn't help that it may not find anymore answers.

I would have liked to have had an MRI/CT scan of the pelvic area to see what that shows before diving into surgery, however my GP said she cannot refer me for one and the consultant said there is no point as it won't show anything.

Anyone else have these symptoms or found something to diagnose the problem? Any suggestions?

I have been reading up on these symptoms for a year and not getting anywhere with it.

2

Prostatitis, CPPS, PNE, PNN

Hi Vee

Try Searching ....Pudendal Nerve Entrapment (PNE) and Pudendal Nerve Neuralgia (PNN). It's a 'possible' explanation.

I wrote the following elsewhere on the site 3 months ago...

I am a 60 year old male and three months ago I was diagnosed with Prostatitis for which a month’s course of the antibiotic Trimethoprim was prescribed and taken. Towards the end of the period of medication it was becoming clear that the drug was having little effect. It might have made the urinary tract feel more comfortable but the major discomfort in the perineum remained.

My symptoms were ‘typical’. Great discomfort when sitting (except on the toilet) with the pain easing somewhat upon standing. They rarely caused sleepless nights as lying prone was more comfortable than sitting although a little pain was still noticeable. Having said that there was usually a point overnight where the sensation of fullness in the bladder necessitated a trip to the toilet

During the initial medical the Practitioner performed a Digital Rectal Examination (DRE) of the prostate. I had expected to go through the roof with pain but there was the first surprise. The prostate gland was ‘normal’ and the DRE was painless. To me this seemed an inconsistency. More followed. My immune system has seemed absolutely fine and the only infections I have ever suffered over my career as a science teacher have been an annual cold and a small number of bouts of ‘flu’. Age apart, my lifestyle equally makes infection a low risk.

Inevitably in this information age we turn to the internet for answers and here again more inconsistencies became apparent. What exactly is Prostatitis? With perhaps fewer than 10% of cases having a clear microbial diagnosis it seems that the remaining 90% or more have very uncertain cause including vague pointers to unidentified microbes and the preferred renaming to ‘Chronic Pelvic Pain Syndrome’ (CPPS). However there is more recent thinking that for me, started to make a huge amount of sense. There is a strong movement suggesting that these symptoms are caused by pelvic instability and such instability has a likely origin in physical damage in the past plus tension and poor posture up to the present.

Up to retirement I had fewer than ten periods of absence from work. Most were for a day or two but one was for over a month. It was due to a lower spine injury that ended my 25 year career playing rugby and left me continually prone to back pain. For me retirement brought much more sitting than I was used to and often with poor posture. Add in tension of working/playing for long periods at a computer and it is easy to conceive that nerves become agitated and muscles put into spasm.

In my case I have suspicion that the damage is to the Pudendal nerve. I understand that it radiates to all the areas that have caused my symptoms; that it originates from the region of the lumbar vertebrae and passes near the sacroiliac joint which can be a point of compression during poor posture. I don’t necessarily believe I have pudendal nerve entrapment (PNE) or Pudendal Nerve Neuralgia (PNN) but the symptoms are very similar so I think there is some damage to the Pudendal Nerve. Apparently, rectifying this condition isn’t straightforward and seems mainly reliant upon lifestyle changes with possible help from stretching/ physical therapy BUT manipulation can aggravate the situation. It is understandable why antibiotics are used as a first line therapy. Prostatitis/ CPPS/PNE symptoms really are like those of an infection without any external signs. Antibiotics have some analgesic effect. There may well be urinary tract infection (UTI) in addition. However, that UTI in my case I strongly suspect was a secondary consequence of ‘Prostatitis’ not the primary cause of it. Many sources indicate that the muscular spasms in the pelvic floor might well cause constrictions of the urethra and subsequent pooling or backing up of urine. This in turn could become a site for infection.

This theory is all very well (after all I have no qualifications in medicine)  ... but for the practical application. Only a few days ago I was in poor health with this ‘syndrome’. Through some lifestyle changes that I have made since, I no longer feel so ill and I believe that I am on the road to a vastly improved situation.  With the aim of getting more stability and less inflammation in the pelvis I spend long periods lying flat on an exercise mat on the floor. I absolutely avoid sitting. I made no changes to my exercise routines, swim a couple of miles a week, walk my dogs a mile or two a day and otherwise live normally. I am fortunate that retirement gives me those opportunities. It would be a serious challenge to getting better if I had a desk bound job.

3

Hi Vee2Bee,

I am so sorry to hear that you are having these problems.  Now i know that I am a guy, but if they have not found anything physically wrong specifically with any of the ladies organs, etc, the chances are that you are suffering from the same condition as the vast majority of sufferers with Chronic Pelvic Pain and matters not if you are male or female in this respect - the issues and symptoms are often similar or even the same and so are the potential solutions.

Please do NOT despair, there is a lot you can do to help yourself.  The 1st thing you need to do is invest in the book 'A headache in the Pelvis'.  

It is written by David Wise and Rodney Anderson - one of them was a eurologist himself suffering with this condition for 20 years before finally he stumbled onto a new train of understanding regards this condition that has lead to new treatments.  

I have only just started reading the book, but it looks brill and this guy no longer has the pains, by following a number of steps. exercises etc.  Whats more, it has helped many others that have suffered with the same condition for years.

Sadly, most eurologists have not read it and so they are mostly stuck in their rigid beliefs that this is either psychological (yes, it is aggravated by stress and try not getting stressed out with this....not easy.  I am a psychotherapist, and i have found using some relaxation techniques on myself has really helped), which is not the case. Or it is related to some dysfunctional component.  Many have surgery etc and more often than not to no avail.  From what i can make out the issue is usually that when the body 'perceives' that there has been a problem in that region for any length of time - e.g. an infection / injury etc....the pelvic floor muscles contract and don't relax like they should, creating this dull ache, which it sounds like you experience and what you have said re sitting on the loo and warm baths etc....all tie in.

The good news, there are many exercises that can help to reverse these muscle contractions and gradually alleviate these symptoms.  It is a viscious cycle, which can be reversed by many accounts.

There are also many on here who have mentioned various pain relief which is effective at alleviating the symptoms, eg amitriptyline - although not sure for ladies what works best...probably the same.

It is apparently one of the most misunderstood conditions, so don't let your Eurologist or gynae practioner convince you there is no hope.  There is lots that can be done to improve, alleviate and in some cases virtually overcome this problem.  Be patient though, it may take a little bit of time, but sure you will get there :-)

Kindest regards

Rob

4

Thank you for taking the time to reply and I have stumbled across the Pudendal nerve over the internet and I will do some further research into this.

I wonder which type of specilist would I need to see for this?

My job is very much a desk job and even though I do get the aches when standing, I mostly get it when say and my job involves me sat constantly. Yes, I can walk about during the day but obviously not for long and there are not many places to walk to within the workplace.

It's a shame that the GP didn't refer me for physio or something in the first instance.

I almost feel fortunate being referred further on at all.

I am pleased to hear that you have found improvement recently through these changes and I will look into your suggestions.

Thank you

 

5

Hi Rob, thank you for your time in replying to my concern.

Agreed men and women alike suffer with Pelvic Pain, although being female, gynae is the first obvious thing doctors go for.

Even though so far nothing physically wrong has been found, I do wonder if this laproscopy would show something. It really is a gamble and one I would like to be more confident about first.

I was prescribed amitriptyline, however this did not work and just made my throat and tongue feel very numb for a while after. I still needed Ibuprofen to take the edge off. So, no point in continuing with the other stuff.

It would definitely be good to know what exercises can be done to relieve the pressure felt.

It does make sense that as this has gone on so long, that I don't know how not to feel the ache!

Unfortunately I am not good with relaxation techniques. Distraction was the only thing that ever helped for me.

I just keep hoping this ache will go as easy as it just came about, but a year on, that hasn't happened.

Thank you again for your time

6

I've been in pain for over 25years and although I've gotten temporary relief from chiropractor and massage but nothing lasts! I'm so desperate for advice I can't tell you.

7

I am currently booked in to have a laparoscopy next month as otherwise I am going in circles. I have had the scans, including an MRI, which hasn't shown the cause of my discomfort. A laparoscopy looks into the pelvis. Not a procedure I am looking forward to, however hoping it may either give a solution to the discomfort or put my mind at ease that I have then done as much as I can to find out what the problem is and hopefully find a way of managing the days where it is not so easy to ignore. Not sure if this is an option for you or if they do something similar?

8

I have had these pains too, so similar.  I found sitting down aggravates it. I googled it and I am wondering if I have Levator ani syndrome.  I have a gyni appointment next week. 

9

Hi Susie, I am not familiar with levator ani syndrome but I did have a laparoscopy in October this year. The surgeon removed what may have been endometriosis and since then my symptoms have been better. I still have the odd pelvic ache but not as bsd or every day like before. Your gynae consultant may suggest something similar?

10

Have you considered levator ani syndrome