Sounds Like I Might Have PN - UK

[ClareW]

Hi everyone,

I've been getting a strange collection of symptoms for about 4 months now. The first was a feeling of slight cystitis and dehydration, followed by a strange feeling in the vagina (like a tampon that is not in properly). There was also a very slight occasional mild burning feeling in the vagina which was worse in the evening.

I tested positive for an unusual strain of thrush and have been receiving treatment for this. The thrush has now been completly eradicated, but my symptoms are getting worse. The swollen feeling is far worse and is making walking very uncomfortable, my vagina has been burning/throbbing, almost like a raw feeling. About 10 days ago, my clitoris started to feel very tender, with a mixture of sexual stimulation and pain. Also, I feel slightly numb around my anus and a bit weird inside it. I've been taking codeine for the pain, but it doesn't get rid of it completely. The pain also gets worse as the day progresses.

I was initially treated at the GUM clinic for the thrush and they have booked an ultrasound scan in a couple of weeks.to check my ovaries. It sounds like it is definately nerve pain to me though.

I have no life anymore, can't sit down, have cancelled all social events up and including Christmas, feel very ill, crying, lost appetite etc.

Could anyone advise me on a plan of action please. I'm not sure of the relationship between my GP and the GUM clinic/any consultant. I could wait until the ultrasound comes back (hopefully clear) and then ttry and get them to investigate possible PN. Alternatively, I could go to my GP as I have been feeling very lightheaded and wobbly in general for about 6 weeks, then I can discuss everything with him.

Please help!

[calluna]

Hi Clare - sorry that things are so difficult for you at the moment.

I think that you should discuss all this with your GP straight away - definitely don't wait for the scan. Feeling lightheaded and wobbly, feeling ill, losing appetite - for 6 weeks - that's not right, and you certainly wouldn't expect any of that with PN.

Except - how long have you been taking codeine, I wonder, and at what dose?

In the meantime - ice! A gel pack ideally, but failing that, a packet of frozen peas or something similar. Wrap in an soft cloth so that the packet is not directly in contact with your skin, and put it where it hurts. You can use this for 10- 15 minutes in every hour, it is very effective and for many of us it is still our best help.

Also, something that people have found helpful for vaginal pain is filling a condom with either plain water, or a mixture of water and alcohol, and freezing it. Do be careful with this though....

I do hope that things improve soon, please let us know how you go on.

[Violet M]

Hi Claire,

Calluna has given you some good ideas. I agree with her that you should see your GP to make sure all possible diagnoses are ruled out. You could ask for a referral to a pudendal neuralgia (PN) specialist also. Usually there's a waiting list so you can go ahead and get on the waiting list and cancel in plenty of time if you find out prior to the appointment that it's not PN. Additional things you can try for help with symptom relief are neuropathic pain medications such as gabapentin or pregbalin. For the feeling of sexual arousal you may get some relief from an SSRI antidrepressant or tricyclic antidepressant. There may be a bit of trial an error to find out what works the best. I liked lexapro because it didn't have very many side effects. Topical agents such as extra-strength vagisil or emla cream might help. These are all temporary measures though that don't get to the root of the problem.

Check out the list of physical therapists in the UK. http://www.pudendalhope.info/node/60#UK_and_Ireland
I know there are more than just the 2 listed so it may take some research to find one in your area. Maeve Whelan may be able to direct you to someone because she teaches seminars to other PT's and may have a list of them. Also, hopefully some of our other UK members can help you with names. If you have any history of accidents/falls or any possible trauma to the pelvic area from something such as heavy exercise you probably will want to be evaluated for pelvic misalignment and instability.

Take care,

Violet

[janetm2]

Hi Claire,
Welcome and so sorry to hear you are having multiple symptoms and the light headedness ( I think we may be attributing this to the codeine as that is a typical symptom of other pain meds).
To possibly give your doctor a reason for the request for the medicines Violet mentioned you may want to print out the symptom list from the homepage marking what you are experiencing. Also in the FAQs is a letter for medical professionals explaining PN. The FAQs include advice on lifestye changes(you are already avoiding sitting but there may be other ideas there). All the best and hang in there you are not alone.
Janet

[Bobby]

Do you ever find yourself tensing your pelvic floor, maybe do to the pain? Doing so will have a reverse effect and cause more pain and make things worse. If you find yourself tensing your pelvic floor (muscles used to control urine flow) than I would recommend reading "A Headache in the Pelvis". Also if that is the case I have more advice I can give you.

[ClareW]

Hi everyone and thank you for your kind words and advice.

I've been to my GP and had a full set of blood tests etc, including white blood cell, calcium, kidney and liver function, thyroid and diabetes, so I await these results. I had only been taking codeine for a week before I originally posted (and only in the evenings) and I've been feeling rather ill for about 6 weeks, so I don't think it's due to the codeine.

I did suggest to my GP that it may be a nerve related pain and he prescrbed some amitriptyline. This was actually rather concerning, as he didn't seem to offer any input, discuss this or offer any further information, but just asked me if I wanted some tablets...

I've been avoiding sitting at all costs for about a week and the burning in the vagina has definately lessened, as has the clitoral pain. The main symptom has always been the feeling of a foreign object in the vagina, which is most unpleasant. There's definately nothing physical to be seen in there and all looks healthy.

I guess I'll await the results of the ultrasound and blood tests and assuming nothing comes up on these, I can show the consultant at the GU clinic the symptom list and discuss PN with her as a possible cause.

[DRAGONSONG]

Hi Clare. I too have just posted as a newbie, and am from the UK. You don't say how old you are but I am 55, haven't had periods for nearly 3 years, so I am postmenopausal, but I also have the feelings of light-headedness, and wobbly weakness in the legs, and have lost weight in my buttocks and legs, no where else. I have been cleared for all "nasty" things, but still get a weird anxiety in my bottom, which a consultant has suggested is pelvic floor disfunction. I also had the feeling of "crawling" in the vaginal area, that is better now that I use vaginal pessaries. I feel rubbish too, and would love someone to confirm they know what I have, because the clinicians sure don't!!

DRAGONSONG XX

[ClareW]

Hi Dragon, I'm 46, but am still having periods and no menopausal symptoms as yet. The G U clinuc did give me some oestrogen cream to try which I'm currently using. The burning feeling has lessened since I started using it, but I'm not sure that there is a causal effect - too many variables. I've only been on it 4 days and I've also made some lifestyle modifications in that time, like not sitting.

The 'foreign object' feeling is unchanged though..

Glad the pessaries are working for you.

[DRAGONSONG]

Clare, are you sure you are not perimenopausal? That is the few years running up to your periods stopping, and some women have the full symptoms before, or, like me, after they stop! Your symptoms sound like classic oestrogen deficiency. You can have bloods done to check what stage you are at, but they are notoriously unreliable, as your hormone levels can change hourly! I don't know if we are allowed to advertise another forum, but there is a wonderful UK site called MENOPAUSE MATTERS, tells you everything you need to know about menopause and everything is discussed, just like this one.

DRAGONSONG xxx

[HerMajesty]

Clare,
Was the rare form of thrush from Cryptococcus? I am wondering because not only can Cryptococcus cause damage in the pelvic area, it can also get into the spinal fluid. The rapid onset of symptoms including the head symptoms of dizziness and illness makes me concerned about this. If you had Cryptococcal infection I think it is worth looking into this as a possible urgent issue of recurrent infection, instead of onset of a chronic neurologic problem. I am glad you are awaiting results of bloodwork because hopefully if it's an infection it will be diagnosed quickly.