I have just joined this site and am looking forward to spending time reading more of information. One question - Is Chronic Pelvic Pain Syndrome a diagnosis? Or am I right in thinking that I have Chronic Pelvic Pain Syndrome BECAUSE of something underlying that is yet to be diagnosed?
From the tiny bit of information I was given "it is overactive nerve endings" (that was it) I don't quite understand why or how I can get such severe pain for no other reason and am determined to look and find out. I have had this for 13 years now, 3 laparoscopies found nothing and in 2011 I was told the above and later had 12 months of Zoladex injections. I am now off them and the pain has started again. I cannot accept this......
Appreciate your thoughts.
Charli
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charlip
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You are right Charli, Chronic pelvic pain is an umbrella diagnosis that will be be related to some more specific pathology. That is not an easy task to diagnose however and as there are so few clinicians who know what causes pelvic pain this task is made even more difficult.
I mean why are your nerve endings (why just the ends??) overacting? There has to be an answer to this although probably not one that is easily discovered.
They may mean this in a central sensitisation way as in the brain is reading the 'over active' nerve signals wrongly??
Pelvic nerve related pain can be due to many different causes, the pelvis is a complicated place.
Will you be able to get a more definitive answer from them or are they happy with this one?
Thanks for your reply and explanation. I am not happy to just accept CPPS as a final diagnosis and be left with it. In my mind something is causing the pain and it needs to be found and treated. I think the same for all sufferers that the true root cause should be found. I think too many GPs and specialists are too quick to either palm things off or are only looking for the common issues such as endometriosis and if they don't find that a few times then they stop.
But I will now continue my research and see what I can find or do for myself.
Hi there Charlip, if you are a male then it probably is CPPS, Chronic Pelvic Pain Syndrome, usually it is caused by prostatis inflammation and chronic congestion, if antibiotics does not work then you may try some natural therapies such as acupuncture, cupping, herbal treatment of diuretic and anti-inflammatory pill or water sitz bath.
I have suffered with "vulvodynia" for 48 years and been treated for all sorts of things which I probably never had : cystitis, candida, vulvovaginitis. I experienced shallow dispareunia which stopped me having sexual intercouse. My then husband was told (within earshot of myself) that I was malingering. This disturbance ruined my marriage, stopped me taking a chance on any new attachments and conseqently prevented me from having any more babies (the saddest thing). I now think I have pudendal neuropathy which has recently turned into PGAD (persistent genital arousal disorder) and have an appointment with a dermatologist on 7 March 2013. I really think I need a neurologist but we'll see what happens. I have seen every kind of alternative practitioner but the best one of all was the psychotherapist (paid for privately) who still helps me to this day. I am not religious but you are in my thoughts Charli. Best love
You could look at 'Guide to chronic pelvic pain' girls. It is very up to date Feb 2012 and goes through all of the chronic pelvic diagnosis for men and women. They do all end on Chronic Pelvic Pain Syndrome, CPPS i.e 'pain as the disease' when the 'pain gate' has been taken up several 'notches' and the brain reads pain signals wrongly. Cognitive pain management is the only thing that will work in this case to try and train the brain back to normal pain readings.
Of course this situation does exist BUT they need to rule other pathologies out to get to this diagnosis. Dr Andrew Baronowski, a urologist (London) who has specialised in pelvic problems and pudendal neuropathy in particular, is one of the co-authors.
It makes very interesting reading, especially chapter 6 for people with nerve issues.
We are all teetering on the edge of being classed as 'pain as a disease sufferers' as hardly anyone recognises true pelvic neuropathies as an option. The neurologists try to claim us as nerve pain can only be related to a dodgy spine (well if there was more (sorry any!) pelvic nerve anatomy taught in med school they would realise this is untrue) When the spinal MRI comes back with nothing to explain the pain described of course you are a malingerer.
If you have taken the uro/gynae route the same thing happens and all because of their ignorance! ! It is SO unjust as having the audacity to politely question a specialists findings will never be taken seriously.
PGAD is often a pudendal nerve issue Hillary but most neurologists can't even help as they have no clue about it. There are some clinicians who are pelvic nerve aware tho'
Thanks for the link, I will be reading it straight away! I totally agree with what you say, I have endo but it has finally been acknowledged that I also have genito femoral neuropathy and chronic pelvic pain. I was not aware of CPP syndrome though, I must look at this. As I have now gone way past trying to get an endo diagnosis, which in itself was hard enough, I will probably be switching to using this forum more. Keep up the good work c
Dear Charli, how frustrating for you. I had endometriosis for years and in the 1970's, before endo reared its ugly head, I was told by my Gyno that I had to have a hysterectomy to stop the pain. As I was only 18 at the time I declined and was told that she would then wash her hands of me and so I had many years of dealing with the pain on my own. I have just had my travel insurance renewed and have an extra cover to deal with "pelvic pain" so it seems to be recognised in some quarters. Would it help to try another G.P.? If the laparoscopies are not showing anything then you must say that you need more investigations. Ask to be transferred to a pain clinic and in the meantime, read "coping successfully with pain" by Neville Shone. These options may not cure the pain but they may help you to cope with it a bit. Good luck. You are in my thoughts.
Thanks Velma. Sorry to hear your story and that you have had a rough time with it.
I haven't had much joy with different GPs at my one practice but through this site am pleased to have heard about a trial in London that would open up new consultants for me and can have an MRI which I haven't had before.
I would be interested to find out more about pain clinics but am unsure of how they are able to help? I had pain therapy for a while which I wasn't a big fan of and was more about accepting and trying to block the pain but I appreciate that can help in the meantime. I tend not to want to use painkillers as I have already built up a tolerance to a couple and the very strong ones that sometimes work are too strong to take if I want to continue with a normal day to day life (driving and working etc).
If it is any consolation, I have had this condition for over 40 years, it started with severe period pain - I had a hysterectomy 12 years ago and it was not the magic wand I expected and I am now on morphine - cannot go any higher. On the positvie side, I did have a high pressure job until 10 years ago and only had to give up work last year (part time). You do get to know the best way to control your life and get the best out of it. There will be low days but i agree that it is nice to know you are not on your own which is how I felt for many years. Like you, I tried to avoid painkillers as much as possible. I have been to two pain clinics and the last one was only for one visit which they more or less told me that I was intelligent enough to be able to sort out what works for me - not what I wanted to hear as I really wanted to talk to someone about it - you can get a lot of support if you have cancer but where on earth can we get support from? With regards to driving, next time you change your car, look out for an automatic, more expensive, I know,but they are so much easier to drive and not having to change gear cuts down on the pain. I managed to negotiate with work to do some work at home - they actually set up an "office" for me here and to work flexibly. It is a difficult situation as it depends on your job and the mind set of you empoyer as to how much to tell them about your illness. I do so feel for you, it there is anyway you think I can help, please let me know.
Yes, its what they say when they haven't found the actual cause. Drs are not the best at dealing with pain, its too personal and variable between patients with the same conditions for them to give a blanket solution.
Sports physios are good at finding the root of pain, treating it and showing you how to treat it yourself. Quite often the pain originates in a different place to where you feel it. They use a combination of manipulations so its really safe, and although you may feel a bit bruised the next day, you feel wonderful for a few subsequent days. You need surprisingly few sessions and you should ask how best to treat it yourself, they will give you exercises to do, and show you the pressure points to press yourself. This means you can treat yourself when you need it yourself.
I have also been diagnosed with chronic pelvic pain. I have been told that ordinary pain relief won't help it as its neuropathic but Tramadol and co-codamol do keep it at a copeable level. I talked to my GP and was told that it is either nerve damage or adhesions but either way it is not worth confirming as laps cause more adhesions and nerve damage is hard to verify. So am stuffed at the moment.. Have decided to get through final year of my law degree (mature student) and then start trying to find other options. Just hearing that there is someone else with the same questions as me has lifted the weight of pain on my emotions a little.
Hi, me too, I have endo but also genito femoral neuropathic pain and chronic pelvic pain supposedly unrelated to endo but mightbe adhesions. I did also have a dermoid cyst that twisted which I believe caused all of the nerve problems. If you find any answers please post and I will too. I have been on tramadol for 18 months but am now building up a tolerance to it and it's affecting my blood pressure so need to find other answers.I feel as if I am stuffed too. Please keep posting xx
Hi, I have been diagnosed with chronic pelvic pain too, as well as genito femoral neuropathic pain and endo. I have prostap injections which stop the cramping part of the pains. If zoladex has worked for you then the pain is coming from your cycle, uterine pain. It took 3 laps to get an endo diagnosis for me, an ando specialist is the best person to go and see if you can afford a private consultations. Have a look at bsge.org.uk for a list. Zoladex wouldn't work if it was something else like adhesions etc. what did they say in the follow up after the last injections? If you had a follow up they should agree that if zoladex stopped the pain it is related to your cycle. If you didn't. Have a follow up the tell your GP you need on urgently. Hope this helps xx
Hi, Just wondered how you managed to get a diagnosis of genito femoral neuropathic pain?? The symptoms described are exactly what happens to me..I was told following a laproscopy (they were looking for endo) that I have adhesions following surgery (2 emergency csections)
They cant cut the adhesions but there is a lot around my ovaries (which they said explains the pain I feel during ovulation) the problem they have is that my pain is CONSTANT! The only difference is the varying degrees of the pain. tramadol and targinact (oxycodone and naloxone) take the edge off and generally just space me out enough but Gynae have discharged me because they cannot remove the adhesions so its something I have to "live with" Had she told me that when I was more with it I wouldnt have accepted it but I had just come round from the anaesthetic so was quite unfair really!
Im back at the pain clinic in April in the hope that they can help me more. I have a tens machine (I hate it because it makes me more aware of the pain..when my best defence mechanism is to try and ignore it and act normal!) I tend to be best curling up with a hot water bottle. The pain is all across my pelvis and down my left leg. Sex is painful and all that I seem to want to do is cry. It really has made me hit rock bottom now coz I feel like nobody can help. When I read up on genito femoral neuropathic pain it made me think that maybe someone could help! How do I get someone to diagnose this??? Thanks x
I would second a trip to a physio btw. Try and find a PN aware one, here is a list hopefully you can find someone near you. There is also a self help video which can help people with a tight pelvic floor but I would wait for an evaluation to see if that is where your problem may stem from.
Although the easy breathing exercise that is explained on that site couldn't do any harm I guess.
Do get your piriformis checked too in the evaluation. As The Guide to Chronic Pelvic pain mentions this can be an area for pelvic nerve problems too (this is where my problems are ;))
Let us know how you get on Charli.
You would be perfect for that trial I would think, I have a diagnosis so no good for me. It is so wonderful that people are recognising the problem at last.
I would really LOVE to see pelvic NERVE pain represented in this trial as it seems that the idea is to get a diagnosis for individuals. The nerve pain connection is (I think anyway) the problem that most medics are unaware of where chronic pelvic pain is concerned so I hope you can take the opportunity to get further than Chronic Pelvic Pain Syndrome with this trial. Good luck, I have a dreadful time with my GP too btw. Some are just not worth saying with. I foolishly didn't take my own advice and have stuck with mine thinking she would 'get it' one day. . . .but no.
Having as much pelvic knowledge as possible will always be helpful Charli so get stuck in with 'The Guide'. Much of the beginning is heavy going and much of the medical terminology can be glossed over, but Chapter 2 and 6 are very good especially 6 for people who have actual nerve issues.
Don't take a diagnosis of chronic pelvic pain syndrome, unless they have ruled pudendal, (mainly) sciatic (but usually affects legs maybe feet as well as pelvis) and post femoral cutaneous nerve issues first.
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I find it odd that Zoladex stopped your pain, as this would suggest something hormonal is causing your pain. I was diagnosed with endometriosis in 1994 & had a couple of "clear" laparoscopies where nothing showed up. However, my pain wouldn't go away & so I was put on Zoladex & Prostap several times. Each time they "switched off" my oestrogen supply with the Zoladex, my pain went away. My gynaecologist at the time said that he thought I had overactive ovaries & that they were contributing to my pain somehow. Chronic pelvic pain is, like others have posted, a cop-out diagnosis. There is a condition called pelvic congestion, which can cause pelvic pain. It's a bit like varicous veins but in the pelvis. They treated mine by giving me progesterone, again to switch off ovarian function & it seemed to do the trick. Some gynaes don't think that congestion is a problem & dismiss it - others see it as a real condition & try to treat it. The typical symptoms to congestion are pain increasing when you're cold, stressed or standing up for too long. It limits blood supply to the pelvis, hence those symptoms flagging up.
I have pain every single day - some days are better than others. I have had countless surgeries & even resorted going to America in 2000 to see a doctor there for my pain. Turned out to be endometriosis and adhesions again...despite a clean laparoscopy 2 years prior to that one. Endo can be microscopic & can be missed by the naked eye. You don't need very much of it to cause you a lot of pain.
I have been told that my nerves are overactive due to nerve damage from endo and surgery. Who knows whether or not that's true. All I know is that I sympathise with you and that you should keep fighting that corner of yours until you get a straight answer and a proper diagnosis. I wish I'd pushed harder when I was younger & not faffed about with silly doctors telling me I was neurotic and depressed.
Good luck with it all & if you need to talk, please IM me any time.
Nella, I couldn't agree with you more. I too have endo although I've been told by a locum at my GP's office that its IBS and I'm delusional if I think its more than that. I also have permanent nerve damage at both a visceral and somatic level. Another poster commented that pelvic floor strengthening exercises only compound the pain when internal trigger points are present, and my pain specialist cannot even do a complete internal examination on me because it causes so much discomfort. Now, try telling this to the general medical community. In the last five years, I have been called delusional, addicted, a pill-shopper, a doctor-shopper, angry, told I'm victimizing myself, told I'm feeling sorry for myself, and that its all in my head. Well, considering that when a person is in pain all the time, that person's brain actually changes in reaction to the pain, so in a way, yes, this pain I live with is in my head. My question to any and all of you is this: how do I convince my pain doc that the MS Contin he's prescribing is just not doing the trick at all (constipation, difficulty urinating, swollen ankles, drowsy, groggy, upper abdominal pain, and violent headache)? He really wants me off the percs because of the potential for liver toxicity, and yes, I admit that I do take more than prescribed because the pain is unrelenting and its the ONLY THING THAT WORKS! Is there something else he can give me? Tramadol, tramacet, toradol, etc., etc, etc. don't work and only cause more problems. Can any of you help?
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