Another flare up hard to.cope

[Hanah89]

Hi,

I'm posting because my pain has flared up so bad and feel really down at the moment and finding it hard to cope.

My gp can't explain my pain and doesn't beleive it's nerve related. Only vestibulitis has been suggested and docotor said to take paracetamol and ibruprofen or codeine for pain. But none of these helps. I'm currently waiting for a refferal to a gynaecologist but still waiting for the letter and may take over a month to get an appointment. Just can't wait this long. Can anyone in UK suggest specialists I can see privately? I live in the north west so Manchester or Liverpool would be good. Otherwise I'm prepared to travel to Bristol or London but it would be much more expensive option.

Just so fed up of this I want my old life back where I was an active person. Until last month I was still going on mountain hikes, but I can't anymore and unable to run either as I'm in so much pain afterwards. And now I'm struggling to walk at all, even a flat 10 minute walk to the local shop and I'm in pain.

Pain had eased off for a couple of weeks and I was feeling a lot better. I did a 4 mile lower level walk with only a few steep sections last week, but since a couple of days after have been in awful pain which seems worse than it was. Each time it flares up it seems worse than the last. The clitoral pain comes on suddenly and is more sharp and stabbing than ever and travels into my lower stomach but feels really deep and aching (its hard to describe but it's so uncomfortable). I also keep getting tingling and numbness in my left foot near my big toe and getting shooting and sudden sharp nerve pains in my legs and also hips and pain in my lower back. I've also had nerve pain in my shoulder and arm. Pain usually not as bad in morning but gets worse once I'm up and moving about. It's on and off all day and sometimes my legs are so painful I have to lie down. But I don't find lying down helps reduce pain. I use hot water bottles a lot but it's made the skin on my thighs all red and mottled so I'm wondering if too much heat will make things worse?

Feel so down right now. I don't want to see friends anymore as I feel so low and can't think of what to talk about anymore as all I can think of is this pain. I don't feel like doing anything and don't want to watch tv, films or read anymore just lost interest in everything. Life has changed so much and I'm worried how it will be in the future.

I'm also finding it hard to work and cant concentrate. I work mainly in an office so do a lot of sitting. I've been off work sick quite a few days recently and don't get sick pay. I'm really concerned about the future and what if I can't work anymore will I be entitled to any benefits? Worried I might end up losing my job if I'm always off sick. So worried about this.

[Violet M]

Hi Hanah,

it sounds like you are very much into exercise like I am. I love a good hike in the mountains also. If it is any comfort to you, I can hike again in the mountains now but there was a time I could barely walk around the house. I think the important thing now is for you to have a proper diagnosis and the right treatments but in the meantime, give your body and nerve a rest until you know for sure what you are dealing with because you don't want to do more damage. If you could find a good PT I think that would be a good idea to at least have an evaluation while you are waiting for your other appointment. You can call some of the UK PT's on the list on our website and see if they know any good PT's in your area. You could also check with Maeve Whelan who is on our UK PT list and see if she knows anyone because she holds seminars to train other PT's.

I know a month seems like forever while you are waiting for an appointment. Try to stay strong and focus on the possibility of getting better.

Take care,

Violet