Pelvic Pain Support Network
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5 years of pelvic pain and it's just getting worse

I'm currently living in Sweden and was diagnosed with pelvic floor pain 5 years ago. Since then, I've only been given different types of medication from the general doctors here and the symptoms have only been getting worse. I haven't been able to find anyone who specializes in this sort of problem here, but i've read a ton online about it and now know that I'm not getting adequate help. Is there anyone in Sweden (or nearby somewhere in Europe) that can recommend a doctor and/or therapist who can help? After researching, I'm pretty certain I have either stressed pelvic floor muscles and/or an irritated/trapped pudendal nerve. I've never had any kind of test so I can't be sure. I'm so desperate now because I basically have to lay down all the time just to avoid pain. Like others, I'm starting to get depressed and am losing hope that anything can be done to, at the very least, limit the symptoms so I can live a somewhat normal life. I've never had these kinds of problems with pain before. It's been the opposite...I once broke my arm in 4 places and then biked home 2 km before I had a friend drive me to the doctor. But now I'm basically an invalid. I could write a book about making excuses not to got out in social situations that I know will make things worse. I have no social life anymore and if I wasn't a researcher I would have lost my job long ago. If things get any worse, I'm afraid I will lose that as well.

Does anyone have any advice on where to go to get some kind of help? Anything would be much appreciated!

Thanks in advance,

Brian

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I have the same problem and am trying this:

tmswiki.org/forum/threads/l...

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Hey, thanks a lot for the quick reply. It was great to see some success stories...especially without going to the extreme with surgery. I've started going through the threads and will read them all, but as I'm reading these I'm a bit afraid that my life conditions leading up to the first symptoms I had 5 years ago might not fit into the stress part of it, at least mentally anyway. I like my job and it was (and still is) secure. I moved to Sweden a few years before I started having problems, but I really like it here. I met my current partner a few months before the first symptoms started and we are still together. She's been great actually. I was also pretty healthy (just had a health exam at work) and in good shape. But I had started training more (spinning and strength) while bicycling every day during winter. Also had some constipation problems and was straining quite often right before the first outbreak. 4 years before the first symptoms, I was hit by a delivery truck in the US while biking to work with most of the impact being absorbed by my hip/pelvic region, although I only had surgery on my shoulder to repair a smashed labrum (the stuff between the ball and the socket). No one looked at the pelvic area even though I had trouble walking for a few days and the bruising was massive there. Really gross. But that was so long ago that I'm not sure it could be a factor.

During the first 4 summers, the symptoms would go away for 3-4 months, sometimes longer. It get's warmer here in Sweden, but it's no tropical paradise. For a couple of winters I worked from home once I started feeling the pain and just stayed horizontal for 6-8 weeks and got over it. But this last summer the pain never quite went away, and now I basically can't sit at all anymore (testicle pain) at all and can barely stand (back pain). And I've been laying down since October now. Stress is definitely a factor though, and if I reduce that the symptoms are not as bad, but they are still very debilitating. I'm taking either paracetamol or ibuprofen and amitriptyline. But the one med I take when I know I have done too much (like going out sampling, lifting a lot, and being forced to sit) is valium/diazepam. When I take that, I feel much better. But I can't take that all the time because of the potential addiction.

Anyway, thanks again for the help! I am so desperate to get back to some kind of normal life even though I realize I will have to make adjustments and live differently. I just want to be able to get up and do things. Anything.

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If your injuries healed, they wouldn’t suddenly ‘unheal’ and start causing problems. If your symptoms can go away for months, then there is no damage causing the issue. Read The Mindbody Prescription or Healing Back Pain (its not just back pain - all pains covered) and go to amazon and read the reviews of people cured by reading the books from all sorts of pains. Google “Thank you Dr Sarno”, website set up by a patients when he retired. Then YouTube “Sarno cure 20/20”. His patients would originally come for back pain and would be cured of that but also their acid reflux or migraines or allergies or pelvic pain would also vanish. It’s not so much the amount of stress but how you deal with it. Dr. Sarno realised that all his patients with chronic pain seemed to have similar personality types: perfectionist, worrier, goodist, hardworking, legalist, stoic, people pleasers, low self esteem etc.

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Thanks, I will check those out too! I really, really want it to be something that doesn't include invasive surgery. But I think it's hard to say if I was actually "healed" just because the symptoms went away. Whatever the underlying cause was/is, it could have still been there but maybe relaxed somewhat due to warmer temps. But this last summer the pain never went away, and now I'm in trouble. So I will spend the weekend going through all you gave me. I really appreciate it!

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Check pudentalhope.org website for pelvic specialists in Europe, sounds like you may have a neurological issue in your pelvis, could be pudental.. you need to be diagnosed and start physio and get a treatment plan. In the case of Pudental neuralgia, the longer you leave it the worse it gets.

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Thanks a lot for the reply! I've checked on pudentalhope but I'd have to fly or take the train to another country, which I'm trying to avoid. But I have to get some kind of help because it is getting worse as time passes. I have no pain free times anymore, even in the summer:( I've found a few places that are within a couple of hours travel, and I can make excuses to walk around if I fly for that short of time.

Thanks again!

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Then try neurologist in your area, most of them should be aware of pelvic issues as well, at least they can put you on proper medication for the time being and refer for some kind of tests, don’t delay, if it’s neurological pain, the sooner you deal with it the better

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Well, Brian, there are many here with the same problem searching for a solution. There are many causes of PNE but from what I read cycling is a significant culprit as is constipation and straining to go to the loo. Probably as the bowel expands due to constipation it presses on a nerve as it passes through the pelvis. Additionally anxiety, stress, can cause the muscles to tighten. Most pills for pain cause constipation so I would deal with the constipation and there are many ways of dealing with that not forgetting that PNE is a cause. Now you have noticed the relief with muscle relaxants/anti-anxiety pills, well try Clonazopam, it does both and works well for six hours or so. One before bed and you will get a good night's sleep if sleeping is a problem which normally it is not. If Clonazopam works then you can say that your anxiety is causing muscle tension which in turn is causing your pain. Some people have gained significant relief with muscle manipulation, others have not. Again there are exercises that can relieve constipation. But start with the anxiety which will increase with the pain. It seems that anxiety is a common denominator from what I read above. So have you analysed what was happening when your pain went away? Were you less stressed at the time? were you cycling less? So Bio Feedback exercises for Constipation and Mindfullness or similar for the anxiety coupled with a bit of relaxation/self hypnosis. But do not give up hope, onward and upward and Nantes as a last resort, it works for a few and only a few and some it makes worse as with CT guided injections. A Tens type implant has woked for some but start with what I have suggested and go from there.

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Good tips, thanks! It sounds like Clonazopam would definitely be worth trying based on your description of how it works. And I have just started some relaxation techniques thanks to the tips above. I've noticed that stress and anxiety make it worse, and I think I'm probably more tense than I realized after starting the relaxation exercises. But when this first hit me I feel like I was very lucky in my life. I was living in a place I wanted to, doing a job that I liked, and had good friends and a nice, but not too crazy social life. The only thing I was maybe anxious about was a new girlfriend. But it was a good kind of anxious I think? We're still together anyway. As far as feeling better goes, the only time outside of summer was when we went to a warmer climate to work for 3 weeks during winter. My symptoms lessened and I had almost no pain. A couple of weeks after returning to chilly Sweden, the pain returned. I also got quicker relief by working at home for two months two winters in a row. But this past summer was not as good. The pain lessened but never really went away. And winter now is terrible.

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I do not have your problem but my wife has had it for six and a half years. I have spent £20K on consultants and treatment with no success but this is because she has been convinced that they are all wrong and she has some rare undiscovered cancer or some such thing. She is now a recluse and there is little I can do to change that, Lying down in a certain position is the only relief and the Clonazopam, two pills a day. The constipation has caused GERD or acid reflux making eating difficult so I do all the cooking of specially prepared food, in fact she is now in a state where she does nothing and sees nobody other than occasionally our children.

We are fortunate to have both a housekeeper and gardener. I have been with her to all her appointments as she no longer drives and learnt a lot from the people she has seen. In my opinion PNE is not in the imagination as some doctors would have it but I believe certain people who suffer from GAD, generalised anxiety disorder, and have a degree of nerve pain are more inclined to suffer to a greater degree. I also believe than the trapped nerve is caused by the after effects of surgery as well as the other known causes. So like many things the causes are not all the same and therefore each individual requires different treatment. Nevertheless, I have watched my wife over the years become a virtual vegetable with no quality of life.

We have tried various hypnotic treatments which worked to some degree but when you are determined that the cause is not mental it will not work, however during our visits we were presented with an inexplicable theory that worked well until you decided it was merely interferring with your mind, it was called the 'Tapping' therory. You decide your level of pain then tap parts of your head and fingers in a ritual that takes about three minutes then ask yourself what your level of pain is and for some reason it has reduced to half, then you do it again and it is minimal. I can only think it works by distracting you from your thoughts of pain as you have to concentrate on performing the sequence of the ritual.

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Hi Berrytog, so sorry to hear about your wife.. sounds like it’s a physical and anxiety issue together. She is blessed with a husband like you.. can I ask if she had a decompression surgery as well?

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No decompression surgery but I am sure there are both issues present but in what proportion I do not know. I was diagnosed in 2006 with terminal cancer, blood cancer and went on a trial of a new medication and am still here to tell the tale, I am also disabled. I have been using a stick to walk since 1997 but could not have a hip operation until 2015 now the other wants doing but my preferred surgeon at Kings has had to postpone three times. So , yes, I am sure that my condition has not helped my wife's anxiety but I am sure the problem is PNE.

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Omg.. what a story.. glad you are ok and survived cancer. It must have been so stressful for you all.. don’t give up, I hope your wife finds strength to continue fighting and true new options. I heard stem cell injections in USA helped. I have PN myself and will try all possible options.. I want to get out of this nightmare.

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Oh no, that sounds terrible. So sorry to hear that. I'm going to try the suggestions I received here and try to keep this post updated. Maybe I can find something that will help other people too.

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can you describe your symptoms in more detail?

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Sure. Back in 2013 it started in late winter with a weird sensation (tingly or itchy) in the urinary tract and then that quickly changed to pain in the testicle area. Thought it was an STD and even though it was super unlikely I got tested. My girlfriend did too. Results were negative. Saw a few doctors who labelled it as non-bacterial prostatitis to epididymitis but then went to a urologist who said it was non-specific pelvic floor pain. This went on for about 3 months and then the symptoms went away enough during the summer so I could bike, which was really dumb but I didn't know anything back then. Was just told that biking in the winter was bad. I did have occasional pain doing that but just biked through it. Symtoms came back during the next two winters but I was able to work at home for a couple of months each year until they went away and biked lightly during both those summers as well. Last winter I was unable to work at home as much and there was a lab accident. Long story, but I was exposed to some nasty chemicals in the air, had a bad headache and couldn't sleep for a couple of nights. After this the lower back pain started in addition to the testicle pain. So bad that I had trouble sleep and this is when I got valium to help relax those muscles. Before that I had no problems with back pain at all. This continued to varying degrees and I did no biking and almost no sitting all of last year. The pain lessened during summer 2017 but never went away for the first time. I made one mistake at a party and sat for maybe 4 hours total at a party. The back pain was pretty bad (couldn't tie my own shoes) for the next week but I was able to lay down almost the all the time and it lessened. Now that it's winter I am laying down all the time, unless I have to travel somewhere. As soon as I sit I get pain the the testicle area and if I stand for more than a few minutes, the back pain comes. It's much better if I walk (but not too much in the cold or it gets worse) and almost no pain when I lay down. I've also started to feel a more aching type pain sort of in between the bladder and outer edge of the pelvis, usually on the left side. It weird and kind of hard to describe.

One thing I noticed after the first outbreak, I was remodeling my flat as I was feeling better (used years of saved up vacation). The following day I would be sore in the testicle area when I did more physical type work, almost like when your muscles get sore after working out. My buddy said it sounded like I had a strange kind of hernia. But now I avoid any kind of hard physical activity, especially lifting heavy stuff.

Before this happened I was really pain tolerant. At least I feel like I was anyway, so this is something really different for me and I think I overdid things in the beginning that have resulted in where I am now. I wish I would have found more info in the beginning so I wouldn't have made so many mistakes earlier on.

One other weird thing, even though I can't drink so much due to medication, when I do have a couple glasses of wine, the following day my pain level is much lower.

I think that's about it. Thanks for your interest!

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I had not read your account when I replied, my wife's pain is in the bowel and feels like she is sitting on a ball and someone is pouring acid in, which are classic PNE symptoms. In your case, yes it could be but it sounds more muscular. There are a lot big muscles down there and can take a long time of inactivity to repair. Muscle manipulation by a specislist may help but rest is essential.

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I feel my problem is TMS but for pain relief I use a pelvic stretching problem called ‘Healing a pelvic Pain’ by Amy stein. You can buy on kindle or Amazon.

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I’m a 67 year old male who has dealt with three episodes of male pelvic pain.

The most recent began in Aug. of 2015 and finally have gotten it under control.

I had trigger point injections and a rectal Botox injection procedures done, all unhelpful. In addition I was prescribed various muscle relaxers, valium, clonazepam, etc The only result was sleepiness.

I found an excellent PT, that gave me the correct regimen of exercises as well as receiving weekly rectal e-stimulation.

As noted, I’m pretty much under control. Still have flares, but I can live my life.

In short, the exercise/stretching regimen and the e-stim saved me

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What is e-stimulation? Thanks.

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Hello Brian,

Health care is universal in Sweden, I suggest you go straight to your primary provider (your “family doctor”) and ask to see a specialist in chronic pain. These doctors have seen it all in terms of pain. Do not waste your time seeing an urologist at this point. Tell the specialist your story, very likely they will order an MRI of your pelvis. They will be able to see if there is something going on there. If the MRI doesn’t show anything, they determine that your pain is neuralgic, and they will offer treatment via medication (eg duloxetine) or nerve blocking.

Good luck.

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