Health Organization for Pudendal Education

Hi I am feeling pretty desperate at the moment, pain is unbearable. I am in my late 30's and underwent a vaginal operation a year ago. I have been in agonising pain on and off since:( I have ended up with severe scar tissue on my perineum. It burns, throbs, unable to sit, when it comes bad then I can't sleep and it's just destroying me, I have 2 young kids and I feel so guilty but just feel like ending it. My gyne said it's to do with nerves and put me on some amitriptaline but thte pain is so bad. There are times when I don't feel as bad as is and I am hoping I will get back to that level but for the last 2 weeks there's been no let up. It's always there though, stabbing pain but I try to manage it. Does anyone have any advise? Thanks for reading.

I sorry you are feeling so bad! Ask your dr to refer you to a pain clinic so you can get meds. My gyno had to refer me becuase they could only give me Loratab for 2 months which I was allergic to. I have a pain dr who has tried different medications to help with the pain. I pray the pain ease up some.

Hi Joanna thats sounds terrible, sounds like they stitched you up in a bit of a barbaric way, or just not putting the right bits together at the right places.
Have any of your doctors talked specifically about what nerves are involved?

Joanna,

Have you tried to call Dr. Gerig? I'm hurting right now too. Maybe she will have some opinions and options for you. I'm so sorry to hear you are in a "flare".

love to you,
cari

Hi and thanks for your reply's, yes I believe that is what has happened with the stitching, no nobody is mentioning which nerves they believe are causing my problems. Cari I haven't called Dr Gerig, where is she based? I am in the UK. I feel there is no hope for me know, I think I desperately need some pain management. Love to you all.



Joanne.

Hi Joanne and welcome to the forums. I am so sorry to hear that you are in such pain and that things are so difficult for you.

I too am in the UK, and I too developed PN after gynae surgery.

I have some suggestions.

First, for immediate pain relief, ice. It really can help with the pain. If you have a gel pack with a cover, that's ideal - otherwise a pack of frozen peas, and wrap it in an old teatowel. You don't want it in contact with the skin. Use this often, hourly if you need to - it was my best help for months.

Second, go back to your GP. Tell her that the amitriptyline isn't giving you enough pain relief, and tell her also that you are depressed and having thoughts of suicide. This will let her know how bad things are for you - don't try to put a brave face on this, be totally honest with her.

It is a good idea to print out a copy of The Pain Scale and take it with you to the appointment - then your GP can see exactly what you are talking about, with the pain.

The NICE guidelines for the management of neuropathic pain are here. It is a good idea to print this out as well. As you can see, there is a whole sequence of things that your GP can do to help you, right now they have not moved past the very first step. So there is lots more help out there.

If you are offered a referral to a psychologist, please take it. This does not mean that they think the pain is all in your head - far from it, it means that they are recognising that your pain is serious. I saw a psychologist at my local GP surgery for a good while, she helped me a lot both with the pain management and with depression. Basically it was CBT - that's Cognitive Behavioural Therapy - and it can make a huge difference, it certainly did for me.

You might also want to consider asking for a referral to one of the consultants in the UK who specialise in PN problems - I don't know where you are in the UK, there is Dr Baranowski in London and Dr Greenslade at Frenchay Hospital in Bristol and I think there is someone in Manchester too. You'll find the list on the main website.

And as a final thought, one of the many specialist cushions might be helpful. I still have to limit sitting, and don't sit at all without one of my cushions. The ones I have found most helpful are this one (without a cover) and this one (with padded cover) both of which I bought from Amazon following a recommendation from donstore on this forum. Expensive, but for me, very much worth it. They both come with a little pump so you can adjust them to suit.

Once the pain is under control, everything gets easier. Please do keep posting, we are all here to support each other and we know how it feels.

I am new to this forum, and although I have read other peoples' posts, this is the first time I have written.

I was so pleased to see your reply to Joanna, Calluna. I had not been aware of the NICE guidlines, but have printed then out now. Also very helpful links to cushions. I have tried several which have not been helpful at all, so might try one of these. One thing I have bought that has helped me is a laptop stand that makes it possible to use a laptop lying down. I saw this mentioned by someone in the USA, but eventually found one on Amazon, called Laptop Laidback. The one I bough was around £50, but I think there are a bit cheaper ones available.

I have had PN for more than 10 years, and only relatively recently been referred to Dr Curran, a colleague of Dr Baranowski at the National Hospital for Neurology, Queens Square, London (now part of University College London Hospitals). I had been seen by a variety of specialists over the years, and it was not until I was seen at Queens Square that I felt that anyone really understood the problem.

For years I have only has pain when sitting, and was OK when lying or standing, but recently I have found that it is still quite bad when lying, although it does eventually fade away, and it does not wake me up at night. The only real way to help is to avoid sitting as much as possible. Not all that easy. Anyone got any ideas about travelling, either by car or any other way.

Joanna, I do hope you get some help. It can be so hard but it can help to know you are not alone. Calluna certainly had some very useful advice. Good luck.

Hibiscus

Hi Calluna, thanks so much for your help and for making me so welcome . Your advise is very good and very helpful, can't believe how painful this is and it's only been 1 year never mind 10!
Hello to you too hibiscus, it's nice to know there are others out there with similar problems.

Welcome Joanne. Calluna has given you some great suggestions. I just wanted to add one thing about pain medication. Depending on the physician, it might be best not to let on that you are having suicidal thoughts because it may cause the physician to limit your pain medications. If you are known to be suicidal and you take too much medication they may be afraid of being held liable. Try to get across the fact that your pain is severe/serious without mentioning the "suicide" word. If you are having suicidal thoughts, give your medications to a trusted family member to manage for you. I went through a period of time when I had to do this because I was in such bad shape I did not trust myself with medications.

You have lots of options you have not tried yet so keep your courage up and hang in there until you find something that helps.

Good morning everyone and Happy New Year - lets hope it is better than last year!

Hibiscus - welcome to the forums! I do hope that now you are a patient at the National, things will start to improve for you. With regard to travelling - one of my cushions lives permanently in the car. It makes things easier, although long car journeys are still followed by some degree of a flare. Last year I had to do a lot of travelling by train, I took my cushion with me (in a lightweight bag that is the right size) and either sat with the cushion or stood. Trains are definitely easier than cars as you can get up and walk around.

Joanne - It is absolutely true that if someone is known to be suicidal and needs to take certain drugs then their supply will be limited. How this works here in the UK depends on the exact situation - on the person's mental state, and on the nature of the meds which are needed. Sometimes the person may be given the drugs by a visiting nurse - a visit for each dose if need be. (Yes, really.) Sometimes they are given three day prescriptions, or weekly prescriptions, or sometimes a family member is asked to keep the meds and to give them out as needed. This is not really because of liability issues, it is to ensure the person's safety. Even if someone is suicidal, they will always get the meds they need, at the dose they need. (I've encountered all these options because I have a family member who is in this situation.)

Personally, I don't think that you should hide how you are feeling. Your doctor can help you better if she knows exactly how things are for you.

By the way - I am just wondering - did your surgery involve the use of mesh?