To get surgery or not to get surgery?

[ocelot007]

Hi everyone,

Has anybody out there had surgery with Dr Vancaillie? And is so, has your surgery been successful? I am facing the very difficult decision on whether to have surgery or not as Dr Vancaillie has recommended.

Has anyone else gone numb before and then had sensation return? My surgery is being recommended because I have recently gone numb on the left hand side of my vagina.

Any advice or views would be much appreciated. I am overwhelmed and very anxious about this decision.

My story:

I am a young female who has recently been diagnosed with PN following years of 'uti's' after sex, although no bacteria were ever found. Essentially every time I had sex, it felt like I got a uti. I had no pain on sitting or any other symptoms.

Luckily me for me, last year I was referred to Dr Vancaillie. I had an MRI done and I was diagnosed with pudendal neuralgia. I now have more symptoms - I was training heavily for an Adventure Challenge. I didn't really understand the risks between doing squats with heavy weights and cycling and worsening my PN.

I now go numb/get tingling sensations in my vagina on sitting (this has developed in last couple of months)- and have gone numb on the left hand side of my vagina (last month).

Treatment so far:
5 months of physiotherapy and osteopathy at the Women's Health Research Institute and my symptoms have worsened rather than improved.
10mg of Endep per day.
Two PRF treatments. Appears to be ineffective.

I have a good quality of life it seems compared to others- I am not in any pain really if I stand. I only get pain upon sitting, having sex or sometimes after doing my internal stretches and using dilators as part of my at home pelvic floor physiotherapy regimen.

Looking forward to hearing your thoughts and comments, and hopefully even a success story or two!

Many thanks,

Fellow PN sufferer.

[Violet M]

Ocelot, did your MRI show an entrapment? Have other causes been ruled out?

I can't answer your questions about Vancaillie. Catherine was his patient so hopefully she can but you can also do a search on his name on the forum. The decision to have surgery is very personal and really depends on how bad you feel your quality of life is and whether you are willing to take the possible risk of getting worse. Most people don't get worse but it can happen. It also depends on how certain you are of the diagnosis. Did you have any nerve blocks yet?

Violet

[ocelot007]

Hi Violet,

I am not 100% sure if its an entrapment. I asked Dr Vancaillie whether it was entrapment or neuralgia and he ended up drawing a diagram of my ligaments- whilst it was great to have him explain it - it didn't answer whether it was an entrapment or not. My MRI states there is ' focal narrowing of the perineural soft tissues surrounding the left pudendal nerve just prior to the Alcock's canal. This appears to be associated with a prominent falciform process'.

What other causes could it be out fo curiosity?

I did have a nerve block. Unfortunately I wasn't flared when I got it done, despite trying to get as flared as possible! Funny thing that. Perhaps I should get another nerve block down now that I am flared...

Thanks for responding to my post. its much appreciated:-)

[Violet M]

Ocelot, some people are posting labral hip tears or inguinal hernias are causing their pudendal neuralgia. You can read Lernica's and Griff's (Linda's) posts. I don't know, it could be the ligaments in your case if that's what Dr. V. saw on the MRI. I know for me it was the ligaments and Dr. Bautrant had to shave some of the sacrotuberous ligaments off at the falciform process. The left side is pretty much cured, the right usually stays at a 0-1, occasionally 2 pain level.

Violet

[catherine a]

Hi Ocelot, if you PM me with a landline phone number I can call you. I don't pay for National calls. Or you can call me if you like.
I am a patient of Prof. Vancaillle and although it's taken me many years to get through this, I am so much better. I had no hope of ever getting better until Dr. Bautrant & Prof. Vancaillie did a surgical PN release in 2007.

As Violet says, it's a very personal, difficult decision to make but at least you can make an informed decision by reading through our posts.

Get in touch and we can have a chat. You can read my story here http://www.pudendalhope.info/node/81

Catherine (Perth)

[mirandamolly]

Hi Ocelot
I am in Sydney and also attend the clinic in Sydney and have seen Prof V.I have had a lot of help from Amy the osteopath-my problem seems to be mainly bio mechanical/sacro iliac joint etc.Since Amy is a genius-since she has been on maternity leave I have gone backwards somewhat---am looking forward to her return in July.
From what I have ben told and have read here-the MRI done in Sydney is not absolutely definitive in diagnosis-it cant categorically tell the difference between entrapment and irritation/neuralgia yet.They need to look at the clinical picture as well in deciding treatment.For example, I was told someone could show entrapment on the mri but not have much pain,or it could look like neuralgia on mri but they could have severe pain.Knowledge about this condition is very new---we are guinea pigs in a way.
I also know that the surgery has a long recovery that may involve increased pain, and it may or may not improve the situation-also that treatments are sometimes still needed after surgery, physio, botox etc.In general-they say try conservative treatment first .
However-there are people on this board who have been cured or greatly improved by surgery.I know it has to be a very difficult decision!!!!
I would consider surgery only if I was in severe pain and had tried everything else, felt desperate and couldn't cope anymore.I do have pain and flare ups-and am impeded in what I can do-no bending, sitting or lifting for example-but I can live my life and currently cope.
Talk to lots of people here, ask lots of questions, pray for guidance, go back to Prof V with a list of questions and get clear answers
Good Luck
Mirandamollyx