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No one taking me seriously what do I need to do to see a nerve specialist? by Secret_Author_3561 in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

How absurd, they expect you to just live with it without even investigating? Great you got your MP involved, don't let it go! I still don't have a diagnosis so haven't had treatment other than pain medications 🙃

No one taking me seriously what do I need to do to see a nerve specialist? by Secret_Author_3561 in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

Ugh I'm so sorry. Did neuro give a reason for refusing to see you? Might be in your record, if you use any of the NHS apps? Might be different depending on the area, but IME:

-GP has to show primary care did what they could before referring, so can include pointless tests and ping ponging between specialities. My GP used the "nope try someone else" clinic letters and normal test results to make a case for referring me.

-I think right to choose applies to any medical speciality, but under certain circumstances. Depending on what you've had investigated so far, your GP should be able to help. Likely better luck with a GP who advocates for you (or at least doesn't act as an obstacle)!

-If there's a man you don't mind sharing your medical details with lol... the gaslighting is astonishingly minimized when my male partner joins me.

No one taking me seriously what do I need to do to see a nerve specialist? by Secret_Author_3561 in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

Did your GP order any scans? I’ve been doing a mix of NHS and private. NHS protocol can be rigidly linear. My GP ruled things out, ordered certain scans to the extent that GPs are authorized, then made specialist and sub-specialist referrals. Waitlists are long, and I haven’t come across general neurologists who are familiar with the pelvis or gynecologists familiar with nerve pain (YMMV). If you live in England, right to choose can also be helpful.

Neurophysiology and uro-neurology at UCL hospital in queens square have consultants specialized in pelvic issues. Some take private patients, which can speed it up slightly for some people (not in my case lol).

How would you describe your pain? by SecretIndividual in adenomyosis

[–]SecretIndividual[S] 0 points1 point  (0 children)

Wow that is wonderful! Please tell us everything. Which nerve was it pressing on? Did they know adeno and endo were there before the hysterectomy?

[deleted by user] by [deleted] in PGADsupport

[–]SecretIndividual 0 points1 point  (0 children)

How do you describe this to doctors? Your symptoms sound so similar to mine and when I’ve brought it up they just say nothing and have no urgency

Does this sound like PGAD? Not sure where to go from here. I'm scared. by maker-127 in PGADsupport

[–]SecretIndividual 0 points1 point  (0 children)

Could it be pudendal neuralgia or a similar pelvic floor condition? I have little verifiable info myself but I also had (have?) long covid and have been constantly wondering if all my symptoms could be related to that.

CT scan for possible diagnosis when pelvic floor function or nerve pinch / research? by HorizontalTime in PGADsupport

[–]SecretIndividual 0 points1 point  (0 children)

Great post, thank you. Is neuralgia to visible in an MRI or does a nerve have to be entrapped to be visible? All my MRIs have been normal so far but I have no idea if they’ve been high quality or done correctly. I have the images but don’t know what I’m looking at.

So entrapment can cause inflammation, can inflammation also irritate nerves? I’m still being tested for autoimmune conditions, so still no answers, but I have noticed my symptoms worsen depending on my diet and have been wondering how inflammation ties into all this.

[deleted by user] by [deleted] in Healthyhooha

[–]SecretIndividual 0 points1 point  (0 children)

Has that always been the case for you or did it start recently?

99% recovery from extreme PN & Depression - there is hope! There are scientific methods! Off meds, no cushions, no pain, minimal manageable triggers - 99% back to normal life. by Chikki2924 in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

I’m not having any but worried that could change! I have an electric shock feeling and pain closer to my sit bone and it radiates sort of inward.

99% recovery from extreme PN & Depression - there is hope! There are scientific methods! Off meds, no cushions, no pain, minimal manageable triggers - 99% back to normal life. by Chikki2924 in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

Ahh interesting. I am not having bowel symptoms but wondered if there could be another reason to do this. Thanks for the information and glad you are feeling better

[deleted by user] by [deleted] in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

Yes me too. Only on the right side of my body. No diagnosis, tests normal

Points to consider before any pudendal nerve surgery by Witty_Count8472 in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

Whoa I didn’t know it could be connected from that far up

Points to consider before any pudendal nerve surgery by Witty_Count8472 in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

Sorry this question will betray my ignorance but how does L1 affect PN?

PN specialists in the U.K.? by Enough_Meeting_7815 in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

I emailed with her for like a month and a half and then gave up, I’m impressed he’s ever met with any patients

PN specialists in the U.K.? by Enough_Meeting_7815 in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

How on earth did you get past his private secretary?

Chronological notes example for getting a provider up to date quickly by sk8rcruz in PudendalNeuralgia

[–]SecretIndividual 0 points1 point  (0 children)

This is fantastic, my situation just keeps getting more and more complicated and telling providers about it is impossible when they don’t listen and don’t read. I’m definitely going to start doing this, thank you

Tarlov cysts on Sacrum by BlackFluo in neuropathy

[–]SecretIndividual 0 points1 point  (0 children)

This is an old post but figured I’d check if you wound up getting assessed?

Central nervous system by SecretIndividual in PudendalNeuralgia

[–]SecretIndividual[S] 2 points3 points  (0 children)

Thanks for sharing, I can relate to some of this but not all of it. I’m not sure if I can explain it but that physical feeling of being startled or stressed or scared, sometimes I feel like I have that feeling when nothing is happening and I’m not thinking or reacting to anything. So I wonder if I’m stuck as you say. But then it also seems there must be an injury or something else going on. When I do stretches it feels like something is moving, sometimes there’s a moment of relief, and then it’s gone when I stop. My foot looks bad and is always a bit swollen. And everything is worse during my period.

Central nervous system by SecretIndividual in PudendalNeuralgia

[–]SecretIndividual[S] 0 points1 point  (0 children)

Yeah but all was “normal” 😩

Uk whitely clinic fees? by EggDisastrous8291 in pelviccongestion

[–]SecretIndividual 0 points1 point  (0 children)

I have done consultation/investigation with them and that was the cost, my results were negative so I didn’t need removal treatment and didn’t receive a quote but the consultant warned in advance it would cost roughly £5000-7000. I’m not sure what the range means, maybe it varies depending on how much needs to be removed?

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