Health Organization for Pudendal Education

Hi I'm Lanny,

I've posted on here once before but I need more advice and didnt know where else to ask. I gave my history on that post but here it is again. I am 19 but have had pudendal nerve pain since I was 13 after multi-level surgery. I am under the care of Natasha Curran and Andrew Baranowski at UCL I've only had 1 appt but based on that they found I have pelvic floor dysfunction as well as a tight with painful trigger points in bilateral Obturators inturnus I also have both Pirofomis pain which is treated else where but when it is treated does not help the pudendal pain ad it is injectd every 6 months with botox and steroids, I was also told that the Pudendal nerve itself is being irritated. My only treatment so far was done in January of this year and the following month where I had 2 CT guided steroid injections into the OI, I was very happy with the relief I got but I have not gotten any relief for months and the pain is now worse then ever, I'm now on the edge of tears with the pain...call it teenage dramatics but these pains I get in both my clitoris - almost all the time and after orgasm, deep inside my vagina - not constantly but a good amount and rectum - before during and after a bowel movements (which sitting on the loo helps with for both rectum and vaginal pain) ...are some of the worse pains I have ever had.

I have called UCL a number of times left countless messages and sent them a letter and I am getting no where. I just need some help for the pain to stop its all I've known my whole teenage life. I'm about to turn 20 and I would love for it to be reduced before another era of my life. I know it may never be gone, I have neuropathic pain in my knees as well as cerebral palsy I'm okay with a life of pain but just maybe not this much pain if I can help it.

What should I do about UCL what can I do about my pain.

Thank you for reading this.

Lanny. x

Hello im sorry that you are going through this at only 19.
Im 33 and developed this after complications from the birth of my son. I have also been referred to dr baranowski in london I am from liverpool so its disappointing to hear that you have not had a good experience cos I will be traveling down to see him.
All I can say is to keep pushing. Can your mum ring on your behalf if you are sick of pestering them? Or see your gp and get them to chase?
Are you on any medications to help with the pain? I am on an anti depressant and an anti anticonvulsant and they do help a bit especially with the vaginal pain and pain on orgasm etc
Chrissy x

Hi Chrissy,

A amazing thing happened this afternoon I got a call from them and they are going to send me a letter for a appt. After months of trying they finally get back to me so I am very happy because last night I was so fed up. But to reassure you the care I received from them is fantastic Natasha Curran is a great listener she is very nice Andrew Barnowski is a brilliant man but not a big talker (lol) so do not worry you will be very well looked after.

I am on
- nortriptyline 30mg at night
- pregabalin 150mg and 100mg morning and night

Thats what I take for both my knees and the pudendal nerve.

I hope everything goes well with you Chrissy please keep me posted how your care under UCL goes. Thank you for replying to me.

Lanny x

So you were just waiting for your appointment for all that time?! Urgh! I have my referral but no apt yet so im guessing it will be a while til I hear!
I hope you have success with your next appointment and you can get some relief.
Will let you know how mine goes when I finally get there! X

Lanny, if your general practitioner knows you well they might be willing to prescribe more pain medications for you. Or you could try getting in with a pain management specialist who will prescribe some pain medication. Some medications that might be helpful are valium vaginal suppositories or topical creams containing ketamine, baclofen, and lidocaine. Of course narcotics can be very helpful too but are harder to get prescriptions for. You should not have to suffer like you are.

In the meantime ice and topical over-the-counter medications might help a little bit. Extra-strength vagisil might help the clitoral pain. Balloons filled with a mixture of water and rubbing alcohol, tied off and frozen, can be inserted vaginally to help calm the OI muscle.

Violet

Hi Violet M,

I am so happy to hear from you! I have just made a appointment to see my doctor and will emailed my pain team doctor too try and get some of the medication you just talked about or at least up the dose of my Oxycodone I really like the creams or suppositories they sound like they will work wonders. I am on oral morphine too but the last time I used that too often I got a bowel obstruction which really didnt help the pudendal stuff. When my mum gets in from work I will show her what you said and we can go to the store and get something to try - me and my mum have a saying, we will try anything once so I will give everything you said a go because you are an expert and very knowledgeable.

Thank you so much for answering me Violet I will of course keep you posted on here. This site has been a god send for me.

Yours,

Lanny C x

@ lanny C
did you sort out your problem?

get well !

Hi

I am no better could only get vagisil which had minimal effect sadly and my GP couldnt give me what Violet M suggested as we dont have things like that here in the UK. But I do have an appt with UCL for December 30th so I just have handle the pain till then. But its not fun.

How are you doing Mary Jane?

Lanny C xx

Lanny, I hear what you are saying -- vagisil doesn't really help much for severe pain. Often ice is your best bet when you can't get medications that help, sadly to say.

Violet

@ LannyC I was also recommended Dr Baranowski by the london vulval pain society...they organise a lot of meetings...you could come once ? the girls are really nice

Hope you're doing well !!!