Health Organization for Pudendal Education

It's been a while since I last posted, but my symptoms are worse than ever now... have now been suffering with PN/E symptoms for almost 5 years. Currently taking 30mg citalopram which is not helping in the slightest. I was on vallium for two weeks, but my doctor is reluctant to prescribe any more. Still struggling to be refered, I have actually given up and lost hope now, so I just accept I'll never get better. I suffer from severe stress and anxiety and I find it hard to leave the house now. I am still at uni, but very behind with my work because I can't concentrate anymore, so I think I'm going to have to call it a day and I am not working either. I spend most of my days lying in bed, but this has not made me better, currently lying down makes me worse.

I don't notice a pattern with my pain, sometimes it can be mild, but others extremely painful. I find that after I shower/bath it becomes worse as cleaning the area must irritate the nerve and cause a pain flare up. I also have additional symptoms, which I believe to be nerve related, these include, tingling, muscle twitching, visual disturbances, muscular pain, confusion. My most recent symptom is the muscular pain, these occur randomly, but usually after I have put pressure on the area, take tonight for instance, I was lying on my right hand side and I suddenly started having terrible pain in my right thigh and buttocks which felt as though I had pulled the muscle. The pain subsided until tonight.. I fell asleep and then woke about 15 minutes later with terrible nerve pains in my back and buttocks (had been lying on my back) now wherever I put pressure I am in pain.. for me lying, not sitting increases my pain levels (when i'm lying in bed at night my pelvic pain is usually at its worst).

I am so unhappy and depressed I feel as though I can't handle my life anymore and will remain trapped like this forever unless I end it all. I am nearly 24 years old and any boyfriends I have had since the pain started have left me because of my sexual problems, which they felt they just couldn't handle. I don't blame them, because I know it must have been hard, but it makes me wonder, will I ever get married, have children, find true love and be able to enjoy a helathy sex life? I strongly believe that I will never have any of these things and I can't handle that. I am surrounded by happy couples, those who are tying the knott, having children, or just plain happy. I can't sit through or join in conversations with my fellow female friends regarding sex, it makes me too unhappy and I have to make excuses and leave. I have only ever told a few people about my illness, mainly ex boyfriends, my parents are aware I have problems, but not that they are related to sex, just the muscular issues I now have.

I made a mistake a few months ago, for the first time in years, I had an orgasm. I had forgotten how it felt and I was so happy I actually cried, but, after a few hours I was in agony and for weeks after. Thing is, I kept getting strong urges and waking up in the night finding myself masturbating and I started doing it regularly. Yeah, I messed everything up, because this is the reason my pain has become so bad and all these additional problems have emerged. Of course I have stopped now, but it makes me cry that I know I've made myself much worse and I can't be a normal, functioning human being. It's just difficult, I am young and I can't do the things all my friends talk about or have a sex life, this makes me want to kill myself sometimes.

I know that I was always destined for this pain, but I always wonder why it happened to me in the first place, because I was never an aggresive masturbator or had any rough sex and I was only 18 when this started. I accept that this would have always happened no matter what, but I just wish I'd had the change to be happy, to meet a lovely man, to have great sex, marriage and children and then if it had to be, this pain could come and beat the hell out of me and turn me into one of the most negative people on earth, but why, why when I was so young, a teenager! This I will never understand, but I guess I have always been unlucky and I will continue to be always. This is the reason I havent received help or found someone who accepts me and wants to be with me, sex or no sex. Perhaps I should be more determined, but honestly, I am tired, and this really has defeated me and I'll never be the person I once was ever again.

Candice Marie,

I am so sorry to hear about your situation. It's heartbreaking that you have endured such extreme pain for so long. It's disappointing that it has effected you romantically. I think the important thing is to control what you can and make peace with what you can't. Right now, the biggest thing you can control is how you manage the pain and the route you choose for your healthcare. Go online to a site like locateadoc.com to find a doctor or therapist who you can trust. It's so helpful to talk to someone who can give you concrete steps toward healing and a new perspective. I have faith that this will get better for you. You will heal and you will find the love that you crave.

Candice, you say you are struggling to get a referral. Maybe we can give you some additional suggestions if we know what you've tried so far. Have you tried my previous suggestion of taking a mature assertive adult with you to your appointment and printed out the letter for medical professionals to take with you? I was in my 40's when I took my mother with me to an appointment because I was in such bad shape. Is your mom supportive and would she go with you?

Violet

Stress and negative thoughts can increase pain. Have you tried taking a hot bath twice a day? Sometimes tight muscles can cause pain in the pudendal area as it can constrict the nerves in this area. Have you found a physical therapist? I am reading a book Headache in the Pelvis by the author Wise. His exercises are helping me. I think that because you are so yound, that your body will heal faster. Don't give up. Try every thing. The people on this forum are very helpful and are here for you.

What I meant to say was-just soaking in the hot bath tub, does that help or does it still cause flares.

Thankyou for your replies.

The problem is that because I have been diagnosed with anxiety and health anxiety, they always tell me my symptoms are part of that and that it's in my head. This problem is what caused my anxiety to start in the first place and I suffered from extreme anxiety for around 6 months last year. I went into hospital three times with chest pain and rapid heartbeat and called out an ambulance once. All of this has not helped because what I was experiencing then was a panic attack. I worry that the pn problems have caused further damage to my nervous system and I know myself that the tingling, twiching, muscle spasms and visual changes are not anxiety related because surely the medication would have helped get rid of them. I don't feel I can take anyone into the doctors with me, my mum is aware I have problems, but not pn and I feel too ashamed to tell her about it. I think that if I went privately then maybe i'd actually get listened to, but as I don't have the money to do that, I'm stuck with the NHS who are completely useless and make me feel worthless and inferior. I've told them about the pain I have and that it sounds like it could be a pn problem, to do with my nerves in that area, but the gp will not take me seriously, and it's been ages since I last went in because it's made me give up completely, I can't take it again, I always came back crying and feeling worse and this has also increased my anxiety. I feel so depressed too, I spend days or even weeks in bed doing nothing and feeling useless and damaged. so i still need treatment for anxiety and depression and to see a therapist, but there's a huge waiting list for that, which im supposed to be on, but i've never heard anything form my gp about this.

I find that taking a bath helps me to relax and the pain the subside, but it's usually later on that it starts again, worse than ever. like i said though, it might be due to cleaning the area, I am always as gentle as possible, but this still irritates it. Thanks, I do need to purchase that books, its just difficult atm as I'm not working and my student loan doesnt stretch very far, need it for course textbooks and food.

I've also been drinking a lot to help ease my pain and sometimes I'll drink excessive amounts to help me cope. I try to be sociable, but I struggle with this as I also suffer from social anxiety (my problems and unhappiness caused this to start too) so whenever i go into uni i'll have a drink (although i skip my lectures all the time) and on a night out i'll go way over the top with the drink. This is to help me socialise, forget all the problems, make me feel happy (although artificial and short-lived) and take the pain away. I suffer from terrible hangovers which increase my anxiety and cause my pain to become a lot worse. I also feel that drinking is causing damage to my nervous system as after drinking i'm twitching, tingly, dizzy, shaking, off balance. I have had these symptoms when not sober for a while, but after drinking these increase tremendously.

I just dont think theres any hop for me, i want help, i want to get better, but i feel so defeated i feel all i can do now is just suffer. Sleep is the only time I can escape this whole situation and i can never get enough sleep these days.

candice.

Candice, I am so sorry to hear that things are so difficult for you.

I would urge you to go back to your doctor. I know you don't want to, but I think that you must - there is a whole lot more help out there, but you need to let your doctor know that you need it.

Please don't worry unduly about the possibility of PN causing damage to your nervous system. All the additional symptoms you describe can also be caused by anxiety, as I'm sure you know already, and that is much more likely. This does not mean they are not real! Nobody thinks that. Of course they are real, you are feeling them. It is most definitely not the case that because you are now taking citalopram, all your anxiety symptoms must be gone. There could be lots of reasons why you might still be having anxiety symptoms - that may not be the right med for you, it may not be the right dose, you may need another med in the mix there - your doctor is the best person to decide.

Waiting lists for the local psychology service do vary around the country. Around here (Wiltshire) it is only 2-3 weeks but I know that in big cities it can be much longer. I don't know how long you've been waiting, but I would urge you to check with your GP about this, just to make sure that the referral was made.

You mention drinking - I expect you know this already, but there is a general recommendation that people taking citalopram don't have any alcohol. I'm not surprised that you have been getting the symptoms that you describe. I know it must be hard for you, but please try to avoid drinking too much.

And finally, you don't need to buy any books. But I would suggest that you go to your local library (membership is free) and reserve/request a copy of Coping Successfully with Pain by Neville Shone. At my local library it costs 75p to reserve a book. Or if you would like your own copy, there are several available on Amazon, the cheapest is £4.08 including postage.

I do hope things improve soon candice. Please do go back to your GP and tell her what you've told us. And please stay in touch.

Candice, over time, pain changes your brain and your spinal cord. I think it is really important for you to get the proper treatment before the changes to your brain and spinal cord become permanent. The changes can be reversed somewhat but it becomes more difficult over time.

I don't know your mom but I know that most mom's would jump at the chance to help their daughter find treatment for a debilitating illness. Maybe you could have your mom read the article "Taking the Shame Out of Pudendal Neuralgia" http://www.medicalnewstoday.com/releases/54832.php and she will understand and be willing to help you. Many of us have felt shame from this disease but if you want to get well you have to get over that and focus on what you have to do to get well. It's a choice between being miserable the rest of your life or possibly getting your life back as I did.

My heart goes out to you Candice, you are so young to suffer from PN. I can tuly understand all the pain you are going through, I too feel the same about having a shower. It feels good at that time but the pain comes two fold a few minutes later. But atleast I am older and have children and a family but to suffer from this disease at such a young age is dreadful. I wonder why life is so cruel to us. People like Violet and Calluna are truly an inspiration to us that we too can fight against this enemy, this site is my lifeline, please follow their advice and try to get some effective treatment. You are so young and you have your entire life ahead of you so never never give up.

Just wanted to add a few more words. Lying down increases my painlevel also, infact I dont even want to try any nerveblocks, I just want to go to the surgury direct because my painlevels have increased so much of late. I can also understand how doctors dont take you seriously. Even for an older person to make the doctors believe about our condition is next to impossible so I know how difficult it is very difficult for you to speak to them about your condition, but candice dont give up. Please keep trying and get a PN doctor in UK and explain your problems, I will always be praying for you, if possible get some treatment as soon as possible because this gets progressively worse and since you are very young and your PN was not caused by pelvic surgery, I feel you have a better chance of recuperating faster.Best of luck.