Pudendal Neuralgia & endo?


I have recently been seen at the pain clinic at the gynae outpatients where I am also under a consultant on on Prostap for possible endo. This appointment I actually expected to be with my consultant as a follow up after 5months on Prostap (generally really helpful, but have suffered with side effects) but it was the pain clinic which was a multidisciplinary team looking just at the pain aspects, not focusing on whether it was endo or not. Although not what I was expecting it was helpful and I am being referred to them for physiotherapy etc to help with the pain and discomfort. What I am wondering though is if this is now my diagnosis (Pudendal Neuralgia) or if it is still possible that I have endo, so does anyone else any experience of either of these conditions and if they relate? I am still waiting for a consultants appointment and haven't had a chance to talk this through with my GP, so any thoughts would be helpful :)

5 Replies

  • Hi the only way to be sure about endo us to have a laparoscopy and then if you do have it, to have it excised

    I don't know much about the other thing g but there is no reason unfortunately that it couldn't be both

    Good luck

  • Hi Merlin,

    Without a proper diagnosis which would involve a laparoscopy and excision at site if any endo were found, I would question why your consultant would put you on Prostap without first ascertaining if you do indeed have endo. To me this is very much 'jumping the gun'.

    The condition you describe (Pudendal Neuralgia) would certainly cause pain in a similar area(s) to that of endo, but without first ascertaining whether you have the disease it's very difficult to say whether it's being caused by that or is a condition on its own. I suffer with lower back, buttock and upper thigh pain, but these are all caused by the endo - a diagnosis that was only made after I had had surgery.

    If you're genuinely concerned that you might have endo I would highly recommend contacting your GP and/or consultant to request a referral to a specialist centre. To continue on your current path of treatment without first knowing what's really causing your issues seems futile, especially if you're not seeing any real reduction in symptoms/level of pain.

    L xx

  • Hi,

    Thank you for the replies. I've been around the houses a bit with this over the last few years. I had a lap in 2014 at a general gynea but they didn't see endo but I did have adhesions and since then symptoms have been getting worse, so on seeing a new GP who thought it could be endo referred me to a specialist centre. In Jan at my first appointment with the specialist they thought symptoms did indicate endo but were reluctant to do another op as I'd had one fairly recently, they gave Prostap to ease symptoms and as a diagnostic tool, i.e. if it helped it would be confirmed as endo. Now I've not had my follow up about this yet, so they may decide to confirm the endo diagnosis I suppose. The pain clinic was in conjunction with this, so is at the specialist centre but the dr I saw was a pain specialist not endo/gynea. I guess I'm just confused as I haven't yet seen the specialist consultant to fill in the gaps, so I suppose I could end up with a diagnosis for both, or just for the pudendal neuralgia. From what I can tell the treatment would be pretty much the same either way, just without the surgery that goes with endo. Will just have to be patient and wait for my next appointments I guess!

  • When you had the diagnosis of adhesions did they explain what these were? In my experience adhesions only ever mean one thing - Endometriosis - so if that's the case, it would make more sense as to why you've been given Prostap. If there's confusion over your initial diagnosis you have the right to request to see your notes, which may help you to piece together what's been going on over the last few years. It certainly sounds like you've been given confusing information though.

  • Thank you - I was told they were 'scar tissues' but not endo, possibly from an infection or similar in the past. But having read up since, and from lots of experiences on here I know it's possible to miss even through a lap so I thought it was worth continuing to investigate. I might ask my GP about the notes, that could be helpful, thank you!

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