Managing Pudendal Neuralgia pain

[Elfcreature]

Hi all,

I joined this forum to remain on top of developments around the complex pelvic floor issues affecting women and to seek support from others.

In my experience these are generally poorly understood by doctors in the UK especially at consultant level and there is an absence of multi agency support for women.In particular women are not offered appropriate support with pain control at all unless they do their own research and have a supportive GP.If you have co existing pelvic floor and Colorectal issues there is no joined up communication between hospital consultants at all.You basically need to keep yourself actively informed and proactively manage your own treatment plan by pushing to have your basic needs met.This is an exhausting struggle on top of managing daily pain.

I have a long history of haemorrhoids and banding has failed twice.A year ago I had a Colonoscopy in response to rectal bleeding and banding was completed.At this point I would have expected my Rectocele to have been spotted but it wasn’t until I later had camera tests for symptoms of mild Gastritis including a Sigmoidoscopy.The same consultant Mr K Mohammed from Tameside general hospital completed both investigations and banding.

These issues lead to banding being ineffective within several months.Since then I have had increasing levels of difficulty with bowel movements sometimes needing to go to the toilet 4 times a day to empty my bowel making the piles worse.The rectal pain is shooting and burning in nature every time I open my bowels and it can also occur at various times during the day randomly until my bowel is fully emptied.My GP feels this is Pudendal Neuralgia due to my womb tilting backwards and also the Rectocele.I now wonder if damage was done during the various procedures as I never had pain of this nature prior to them taking place.I was referred for pelvic floor Physio and have now been discharged.I complete the Physio as advised and follow a healthy diet and hydration.

The hospital consultant has been dismissive and ineffectual failing to accurately record my specific symptoms and then sending me for an Evacuation Proctogram without mentioning on the referral that I am Coaliac.The initial consultation was by phone and English is not his first language.I struggled to have a reasonable discussion with him or ask any questions.He failed to listen to me or take a full history and made the assumption I had generic pelvic floor symptoms and urinary frequency neither of which apply to me.He wrote to my GP and told her I had refused the Proctogram when this was untrue and I was compelled to speak to his Secretary to inform her I had consented to it.

There was no gluten free barium meal stocked on arrival for the Proctogram despite 1 in 100 people having Coaliac. Had I been newly diagnosed or not made myself aware,the barium meal would have made me very poorly.I am now awaiting referral to Wyhenshaw hospital for an MRI Proctogram causing further delay.The latter debacle lead me to make a formal complaint to PALS about the issues on 3.06.24 and I am waiting for the outcome.

My excellent female GP has referred me for a second opinion at a different hospital with a female consultant Dr Karen Telford at Wythenshaw hospital with established experience in pelvic floor and Colorectal issues.I have been offered haemorrhoid removal and Rectoplasty at Tameside hospital but I believe there may be risks around faecal incontinence and I certainly wouldn’t trust my current consultant to do the surgery so it’s a case of trying to manage my pain at this point.

My GP has been very responsive and helped me through trial and error to find the right combination of medication to manage my pain which is Baclofen and a laxative called Lactulose.I do my Physio and do the contraction/ relaxation pelvic floor excercises especially when I have pain which I think helps to release the trapped nerve..so it’s a waiting game now and determination to stay positive.

[HashtagNell]

Dear Elfcreature -- what a time you have had! This is so very debilitating and discouraging, but what luck that your GP has been so very helpful. Your account is clear, informative and educative. I don't have exactly the same symptoms (nowhere near as bad) but I found reading about your experience extremely useful. Thank you for sharing in such detail and so accurately. I send empathy and good wishes to you. Nell

[Elfcreature in reply to HashtagNell]

Many thanks for your lovely reply and support.What a great forum.

[pizon]

I am so very sorry you are going thru this I have suffered with p/n for about 7 years now..my advise is to find a pelvic pain specialist not a pain specialist a pelvic pain specialist…I also recommend the book titled “Healing Pelvic Pain” by Amy Stein and the DVD by Dustine Miller titled “Your Pace Yoga” I did not start to feel better until I stoped going to the dr.’s and did my own research I went thru hell with many ,many different dr.’s and pills and procedures that made me worse again I am not a medical specialist of any kind but for me personally and my advise is to start with the book and yoga they have truly saved me..I am not 100% and never will be I have accepted that but I now have a life and am fully aware of my limitations..before I took my health into my own hands I was on the sofa for a year and a half and got no relief from the medical profession..I am in the states and my treatment was horrible with the medical profession..I am happy you have a Dr that cares ..it took me 6 years to find a primary car dr that understood this horrid condition..Most dr.’s made me feel that all i wanted was drugs and that is the last thing I want or need .. I wish you the best and will say a prayer for you

[Elfcreature in reply to pizon]

Hi Pizon.Thank you for your very helpful reply and support.I will certainly take your advice and get the book.You sound as though you've had a very difficult time too but your determination and insight has pulled you through Thank you so much for your prayers.x

[Jacey1]

It seems you've had such a difficult time and the last thing you need is an unsympathetic consultant. Unfortunately they do exist and you have a right to a second opinion. I'm glad your GP does listen to you. I have a rectocele, no pain, but I'm constantly aware of it and can't imagine it could be any larger. I saw a hospital consultant who didn't try to persuade me into having surgery or offer any treatment. His nurse said if she were my age she'd just live with it. I wish prolapses were more openly discussed. When mine started I had no idea what it was and felt very ignorant. Apparently they're common but we just don't talk about them. Good luck with your next appointment and I hope your new consultant is more understanding and offers you solutions that provide you with some actual relief and comfort.

[Elfcreature in reply to Jacey1]

Many thanks Jacey.This is such a great forum for women to reach out to each other and it helps me feel more in control of my symptoms knowing that others share my experience.Good luck on managing your health too.

[Jacey1 in reply to Elfcreature]

Thank you for sharing your experiences Elfcreature. Your positivity and determination is a real inspiration and so encouraging.