New and scared

[Buzzy Bee]

Hi guys

I wonder if you could help me to rule out/in PNE. I am 28 years old.

About three years go I noticed a strange buzzing felling in my urethra area. Not like the sensation you get with cystitis. A really strong buzzing feeling.

Then I started running EVERY day about four miles per day. This was when my left hip began to ache.

Next I started to get vulval and anal symptoms. Mostly in my vulvl area. The symptoms included inflammation and a sensation as though insects were crawling under my skin. It lo felt like someone had give me a sharp stabs with a needle and as though someone was pinching me. The pain in my left hip turned to a ache deep inside my buttock eminating from my groin, located to the left of my labia.

The tingly sensation feels like a gut wrenching itch round my vulva (swabs taken, all clear), it's not a normal itch, it's like an 'itchy tingle' that emanates deep into the skin. This feeling occurs mostly in my clitoris too like pain/itch/tingle/pricking.

I had an X-ray on my hip an it showed wear and tear on my left hip. I also have a cervix, huh is twisted to the left nd I know that PNE is connected with such asymmetry. My bladder seems to get sore and I have noticed that I have o push to empty my bladder.

When aroused I gt a really strange dull but strong pain in my pelvis, it's such an odd indescribable feeling and often during sex it feels I have on thing stuck in my back passage (saying it nicey lol).

Potent steroid cream, such as clobetasol, did not help my vulval symptoms. I also tried moderate steroid creams, such as eumavate, and that I'd not work. Immunosuppressants, elidel and protopic, have not helped the vulval symptoms in any way either.

I see a dermatologist who specialises in vulval skin conditions and I was expecting her to dismiss PNE, but instead she is writing to my gp to suggest that he refer me to Pain Managenent and mentioned nerve blocks. She lo took a vbiopsy of the vulval skin, which showed lichen simplex and spongeiosis, which is due to the inflammation. the inflammation is not caused by an irritant or an allergy as I have had patch testing and intensive ruling out tests done to determine this.

I am currently on gabapentin and amatriptyline to help oth depression caused by my symptoms.

I am with my long standing partner of 13 years, who I am engaged to and would love to marry and have children with, but feels like he deserves much more than the broken mess he has in me. He is amazing BTW.

I am currently struggling to cope at Opwork and feel deeply unhappy.

Please guys, I would appreciate your opinion on this, do you think that it is likely that my symptoms are caused by PNE.

Many thanks in advance

[birdlife]

Hi Buzzy Bee, welcome to the forum.
I can't answer for all of your symptoms, and I'm sure others on the forum will step in, but here goes.
Your hip pain could possibly be a hip labral tear and your pounding the pavement every day has either caused it or worsened an existing tear.
If you've had infection ruled out then bladder irritation and a feeling of not being able to empty the bladder fully could be PN, as could your description of what sounds like nerve tingling around the vulva and clitoris. The pudendal nerve innervates the external genitalia of both sexes, and the sphincters of the bladder and rectum too. A feeling of an object in, or about to drop out of, either the vagina or the rectum is another possible feature of PN/E, so the strange feeling you have in your back passage during sex could be the additional pressure on the rectal branch of the pudendal nerve.

If your dermatologist is recommending to your GP that you undergo nerve blocks for PN/E, make sure you have the blocks done by a PNE consultant and not at your local hospital Pain Clinic. The blocks have to be xray guided to within 5mm of the nerve and should be done by a trained PN consultant. I don't know whereabouts in the UK you are, but there is Dr. Gareth Greenslade at the Frenchay Hospital in Bristol, Dr. Andrew Baranowski at the National Hospital in London and Dr. B. DeMello in Wythenshawe, Manchester. All waiting lists are on the long side, I'm afraid. The blocks are mostly diagnostic, rather than a treatment, so if you gain any long term benefit from them that's a pretty big bonus.

There is no sure way yet of knowing whether anyone has PN (irritation) or PNE (entrapment), only surgery would reveal that for sure, but that's always a last resort after all other options have failed. You haven't mentioned whether your pain and inflammation worsen when you sit? This is one of the main symptoms of pudendal neuralgia. If you do have pain on sitting, is it relieved by standing or laying down?

Try not to get too down, you have a good partner from what you say , and you're on the road to getting a proper diagnosis. Has the gabapentin and amitriptyline started to help you yet?
Take care,

[Buzzy Bee]

Hi there birdlife

I was lucky enough to have read your message on time. I had an appointment with my GP this morning, and read it just before I set out.

I read your advice regarding getting a consultant, who is a specialist in PN, to perform the nerve block. The consultant dermatologist, who said she was going to write to my GP and advise that they refer me to pain management, had mentioned that they do it at my local hospital!! So when I read your reply, and the posts of others who had advised against having the local hospital pain clinic to do the nerve block, I immediately felt anxious that my GP would only be willing to refer me to my pain clinic at my local hospital on the advice given by my dermatologist.

So, I went into my appointment this morning ready to suggest a pain clinic whereby I could see a consultant who specialised in PN. As usual, the locum doctor, who I've seen before, tried to will me towards counselling. In the beginning, she suggested psychosexual counselling, and said that I'd been with my bf for so long that he wasn't turning me on any more. The advice my GP gave me in the beginning was to go home and seduce my boyfriend. They refused to take me seriously and so over the following three years my symptoms got worse.

Anyway, credit due here, my GP agreed, at my appointment this morning, to refer me to pain management. On your advice I asked to be referred to Dr. De Mello, as I live in Manchester. I could have cried with relief. I know that this in not necessarily the answer to my prayers, but I consider myself so very fortunate to have got an opportunity to see one of the best!! My appointment is is the beginning of June, the receptionist thought I'd turn my nose up because it is such a long time off - whereas I just wanted to kiss her, she obviously didn't know how happy she'd made me. Because I booked through the choose and book system, I can ring for any cancelations, which I'm going to do after writing this message. For once, though I have fought by being stubborn (but pleasantly so), and refusing to put up and shut up, by going to the doctors time and time again, I finally have a little ray of hope, that's enough to keep me going for now.

I'm off work today, I struggled in all week, but having to hide in the toilets to cry and then compose myself, I knew I wasn't coping. Plus I'm in the caring profession myself and to look after others I have to be well myself or I'm no good to anyone. But back to the grindstone tomorrow.

Your questions, the pain in my hip tends to get worse with sitting. My whole pelvis can ache, but it's not excruciating like most people describe, and for which I thank god for on a daily basis. My hip pain comes on at night too when I lie in a certain way. The gabapentin did notching for me. The Amitriptyline was only prescribed at 10mg per day to begin with, again prescribed by my GP who basically doesn't know how to help. When the consultant found out about my dosage she was so shocked. The prescribing GP by the way has never exaamined me and so has no idea of how bad things are down there.

The pain in the vulva, clitoris and also anal area, feels very strange. Noting I do or don't put on that area helps, it's like it's not responsive to an outside thing, it's more responsive to what's going on inside. If that makes sense What I mean is, if the ache is the then the vulvsl/anal symptoms are. When it gets better down there then usually the pain in the hip is better.

Many thanks for your detailed reply BTW, much appreciated.

[birdlife]

Hey, Busy Bee, that's brilliant. You've done really well today, sometimes (well, often actually ) the only way to move forward is to be persistent though not rude (hard though that is sometimes!). Yes, they sent me to my local hospital pain clinic too, but when I got there and told them I'd found out the block should be x-ray guided to within 5mm of the nerve, they looked at each other and said ok, you let this other hospital do it then! I had mine done in London, where there is currently a 40-odd week waiting list, so you've had a good result getting the Manchester one for June. Please post how you get on when you see Dr. DeMello as he's only recently come to the attention of this forum, and we're glad to add his name to the famous few.

The hip problem I haven't had but others on here do have hip labral tears, if you enter that in the Search box top right up will come a list of posts you can read through.

Do you have perineal burning on sitting that's relieved from standing up, sitting on a loo seat, or laying down? This is distinct from vulva, labia or clitoris and is the area of the pelvis from anus to vagina, the bit you sit on. Perineal burning worsened by sitting is one of the main PN/E symptoms.

Strangely, depression is a thing people always try to hide. "How are you" .."oh, I'm fine thanks".. when really you just want to crawl into a hole and not surface. If you really don't think you can face the stress of work, go back and ask your GP to sign you off for a week or a fortnight till you start to get properly back on your feet. Please don't hide in the toilets, just say I'm having a difficult time at the moment but am working my way through it, and if they have any worth to them your work colleagues should offer you sympathy and support. If not, they aren't worth the time of day. I wouldn't be surprised if your main support would actually come from the ones you care for as they know what it's like to be in need. Take the amitriptyline at at a stronger dose if your GP agrees, as primarily its an anti-depressant but they also use antidepressants in a lower dose to soothe irritated nerve endings. The dosage you're on is for pain management, its not high enough to help depression. May take a while to kick in (a month) so give them time. They should also help you to get off to sleep. Hope so.

Try not to kiss the receptionist too often ..

[Buzzy Bee]

Hi Birdlife

Iol I will certainly try NOT to kiss the receptionist as this would only confirm what she probably already thinks of me and that's that I'm mad lol.

I wish I could have time off work but unfortunately my discomfort is there all the time, its been a bit better today because I haven't been as stressed at home. This 'flare' started at the beginning of December and had just continued, nothing I do helps . If I took time off work until I got better then that could be months and months, absolutely no idea what's wrong with me.

No pain in the perineal area when sitting. I know this is a main symptom, so don't know if this makes it any less likely to be PN....

Just have to wait and see.

I shall certainly let you know how I go on with doctor De Mello. Just a question, did your nerve block work after dr baranowski did the procedure and how long do they last? If they work, is there a surgical procedure that will work permanently?

Many Thanks!

[birdlife]

It's probably a prime requisite on this forum to be nuts from time to time

No, I didnt mean time off work till your symptoms go, I meant take time off for your depression, till your emotional state settles down a bit and you're not so tired and easily upset.
Anyhow, will send you a PM later re the blocks I had done under Baranowski. How long do the results of a nerve block last? That's highly variable. You can see from my signature how long mine lasted. They are diagnostic, rather than treatment. Surgery is a last resort, and is not to be undergone lightly. But you are very young and in a better standing position (no pun intended) for recovery with or without surgery. Let's get a factual diagnosis for your first!

Oh, please avoid lifting heavy things (or patients) as much as possible in your job or even at home, and anything else you find that exacerbates your symptoms.

[Buzzy Bee]

Cheers for that, Birdlife

You know, in addition to all the great advice you've given me, the labral hip tear sounds so 'fitting'. I've read that MRI scans show this, so I'll request one of these. I wonder if the pain clinc does them or if they can refer me for one?

Just to put a spanner in the works, my X-ray was seen by the radiographer and in his report to my GP he's stated that everything is within normal limits. Now, when I had the X-ray done the nurse showed me the X-ray and said that there was some damage, wear and tear, to the left socket. I did not tell him that I had pain in that hip, he pointed out the difference to the other hip. Been on the phone to the X-ray dept just now and the nurse said that she'll have their radiographer to take a look and see what he says. If not-I'll pay for a copy of my X-ray! It's fate that the nurse let me look at the X-ray, because they don't have to.

Blinkin ek!! Id say the answers staring them all in the face - literally. I just hope my X-ray hasn't been overlooked by somebody who has become flippant in their job!!

I look forward to receiving your email. I think I read your signature, still getting used to ths site, the first block wasn't successful. If you don't mind in your PM I'd like to hear a bit more about your journey so far

[little mo]

Hello BB
Hope you didn't mind me shortening your name.....I couldn't resist answering to your post, as you will see by my last visit it was some months ago...I am about to launch my new post soon, just not enough hours in the day any more...I really don't know where I found the time to work!!
Welcome to the forum, I am sure you will gain as much comfort, understanding and knowledge as I did because I was pretty much at suicide door when "out of the blue( so to speak) the name of this site was written for me on a bladder and bowel forum I had joined. I had been pushed from one specialist to another and around again, I had every test /procedure ending in scopy and then threw in the hysterectomy for luck. I could have written (in fact I have) every symptom you have suffered with and for three years I couldn't get a diagnosis for the pain, (oooh the pain) that compleatly wrecked my confidence, and changed my life compleatly....I can only say that things haven't changed that much except the support and knowing it's not in my head made it so worthwhile to carry on. To have just one person knowing what you are going through changes how you feel and to have the symptoms identified is a huge bonus.

I wanted to let you know these few important things, it seems to me that you, like myself, have tumbled into the hands of caring, supportive people who give unconditional love and advice not a moment too soon. For me, I was elated to discover there were people with the same/similier pain as me and even in the same places!! (a strange thing to say really) but this is even more strange and scary ....I, little me, wanted to punch every Doctor on the nose who seemed happy to let me continue with my life thinking I was the only person in the whole wide world with those symptoms. I hope that you now have the strength, the courage,the knowledge and the power to fight your corner...and win. I have so many people to thank on this site, I know birdlife will be watching over your posts, so to Helenlegs, so as I have a little spot here,I would like to say thanks so very much for the advice given to me, and so glad you joined us for the help you need ...take care lots o love...I will leave my new post untill tommorow..love from littlemoxxx

[Buzzy Bee]

Hi there, Little Mo

Thank you so much for your kind words. I'm already overwhelmed by how strong! Kind and giving the people on here are.

I'm fortunate enough to have the best mum in the world at my side through this bad patch, and it is a bad patch. I've had this problem for years but because this current flare has lasted so long with no relief, I'm beginning to add panic to my symptoms. I'm sure it must be worse for my mum more than me. I would love to get better more for my mum than myself.

Like you I can't get a diagnosis, one doctor said the vulval symptoms are an allergic reaction. But it's strange that an allergic reaction can make your buttock sore. If the symptoms were being caused by something external irritating it then why are my symptoms not consistent with anything that I do or don't put on it. Now that allergy has been rules out, they really have no clue what to do with me. I think you must have read my post about the comments I got about not being turned on by my bf, or that I was too tense for sex.

My worst point was when a consultant diagnosed Lichen Sclerosis, and of course, because he had diagnosed it, I believed it. If you've never heard of LS, google the images, and you'll see why this made me feel so terrified. Now a biopsy has ruled LS out and PN is looking more realistic.

I thank you again for your kind words, it really does mean the world to have support from people like yourself and of course Bird Life. I so hope that one day I can come on here and post a message about something really really hopeful.

BB XX

[little mo]

Hello bb
I just wrote a rather large letter to you and once again my computor wants to go it's own way.....I was without a pc for some time and oh boy did I worry. as you say, all the nice helpfull people despite their own pain take some time in supporting and sharing so as we don't feel alone, scared and confused,I felt awfull I couldn't make contact.
Yes I did read what was said to you and I really couldn't think of words, I was asked by my partner why I sat with my mouth open as if I had seen a ghost as well.
I should not have been surprised or shocked as my own gp turned his back on me. He told me he was concerned as to how many times I had visited the surgery
and preffered that I didn't!!! just one of many little stabs in the heart..It is said that things happen in threes, my disaters came in three thousand and threes,
I am sure that each and every one of us here have (if not more) one or two identical symptoms and have been in similier situations. I also think it takes around three/four years to eventually get close to the problem ...all the tests and procedures,..how many times I have wanted to say "do you think I would want to go all through this if I wasn't in pain?"
To be fair to the medical profesion, it must be difficult for gps, they are overloaded with patients, only have six mins per person and if nothing shows on x ray!!! I suspect at times they are as frustrated as anyone of us. You probably know this already BB, there is an organisation that work within hospitals .....They are called something different now I think, but a few years back they were called PALS and can be very helpful.
I can understand your mum worrying, but with each new post that comes your way she will be able to join in with your new plans and hopes and instead of her being one of a few very caring people she will be able to count her self into a much larger group ...if ever you are worried, scared or need some question answered after adding this to your favourites it will be one click away from now on for you, again, I am so glad you're aboard, and will speak again soon, take care lots o love xxx