Members and specialists in Sweden?

[Toel]

Arrived to this board after about two months of sharp pain - like from a tripple bee sting - following certain moves and increasing as the day goes. Finding all the talk about Pudendal nerve pain is like finding the "home" of my pain. I'm in a state of panic. My doctor has no idea and does not know where to refer me and reading up on information it sounds like this can only get worse. I can't make it to work and I'm of no use at home and I have reached a point of stress where I can't sleep either (also a side effect of pain killers that are not doing their job). Kids and husband don't know what to do either. Glad I found you anyway!

Is there anyone in here who lives in Sweden, or knows of a doctor in Sweden that takes this seriously? If there is nothing in Sweden - where is my best bet to find doctors with knowledge (I don't neccessarily want to have surgery before having tried other ways)? I appreciate every tiny bit of information to help me dig.

[Violet M]

Toel,

Welcome to the forum. I've heard other people describe their pain as feeling like a bee sting or hundreds of bee stings.

I've not seen any posts from patients in Sweden recently. This would be a long shot but maybe you could contact Maeve Whelan (she's listed on our page of physiotherapists at http://www.pudendalhope.info/node/60#UK_and_Ireland) and see if she has trained any Swedish PT's. If you can find a PN knowledgeable PT in Sweden they might be able to help you with a diagnosis and they also might know of a PN aware doc. Or you could try seeing physicians or PT's who are affiliated with a major university hospital because they tend to be more on the "cutting edge" than non-academic settings.

Violet

[catherine a]

Hi Toel,

Like you, when I developed PN symptoms I couldn't find one doctor or PT here in Australia who could tell me what was wrong. Welcome to HOPE. Without the help of those here who are dedicated to helping others, I would never have found the answer to my problem. Do what you can to find a good pelvic floor PT who is willing to learn more about Pudendal Nerve issues if they don't already know. Don't waste time and money on health care professionals who can't help you.

You could try contacting other European doctors listed on this website and ask if they know of anyone in your country who is treating Pudendal neuralgia. Even if you have to travel to Belgium or France, you will find the right people to help you.
I had no-one here in Australia until I found one Research Professor who was willing to travel to France with me so that he could learn more. He is now helping many many people, both men and women here in Australia. Don't give up hope that you will find a cure for this horrid condition. Not everyone has a bad experience for a long time. Those who do get better don't often log in to this site any more. They just put the bad experience behind them and get on with life.

I do hope and pray that you find a good health care professional soon who understands your neuropathy and can give appropriate treatment. Good luck. keep in touch.

Catherine

[Toel]

Hi Catherine and Voilet,
Thank you ever so much for getting back to me. I realize as I read that I'm desperate for support and a shoulder to lean on. I'm stuck in a state of panic right now and it is not making things any better. Pain increases and my search for help is getting desperate to where I can't see what is important stuff and what is not. And the bad prognoses I find takes away all hope (thank you Catherine for reminding me there is more than one outcome to this ordeal - I needed to hear that!). Sweden is a small country, not usually as medically advanced as it prides itself to be (particularly not when it comes to women's health issues, which I think they would have this down as, even though it affects men too), and I'd be surprised if I can find even a PT that is knowledgeable in this. But I sure hope someone proves me wrong. I'll definitely check with Maeve Whelan and keep my fingers crossed.

I thought that if I can't find a doctor with PN-awareness, maybe I should just aim for the right type of specialist. But what is the right type? Do I want a neurologist? Or a gynecologist? Or would I be ok with just a PT? (The way this is going I have a feeling that right now what i really need is psychiatrist/psycho therapist to help me deal with insomnia and panic...). Thanks again for support.

Toel

[Violet M]

Toel, painkillers help some symptoms but with neuropathic pain sometimes they just take the edge off. Have you tried any neuropathic pain drugs like lyrica or neurontin? Ice is also a very good painkiller that helped me sleep on numerous occasions and kept me from going insane. You can get soft ice gel packs that work well. Some women insert ice vaginally. You can put water or a mixutre of water and rubbing alcholol in balloons or condoms and tie them off. Ultrasound gel works well too.

Like Catherine said there is definitely hope for improvement if you have pudendal neuralgia, especially if you are diagnosed early and get the right treatments. I hope you can find someone in your country who can help you but if not you may need to travel as many of us have.

Best,

Violet

[Toel]

Thanks Violet! No, I haven't tried any of these neuropathic pain drugs. I haven't found a doctor taking this seriously yet, so they are not prepared to give me strong pain killers. (I live in rural Sweden with no choices and long referral times to the hospital.) But I'm a bit scared of these pain killers, since a friend with an injured nerve root (after failed surgery) has gone through a number of them getting severe side effects. Can you take these without getting really ill? I think I'll try the ice first, but so far the pain is worst when I move around and it's hard to get the ice to stick.

I actually did find a doctor in Sweden who has written about PN, but he is retired. I'm trying to reach him to see if he knows about someone else here. If not it seems I'll have to try in another country.

Can people really keep a job with this problem? I mean, can you live a fairly "normal" life?

Thanks again,
Toel

[greeneyes]

Toel:

Many of the drugs used to treat PN are not actually pain killers. They are antidepressants, anti-convulsants or anti-anxiety drugs. For example, I just started taking nortryptiline, a tricyclic antidepressant. Some other medications you could try are gabapentin (Neurontin), pregabalin (Lyrica) and Cymbalta (an SNIR antidepressant). Cymbalta is used to treat anxiety as well as pain. Anti-anxiety drugs like valium may be used in suppository form instead of pills. Once you get your pain under control your anxiety level should go down. Most of us have had to deal with medical practitioners that do not understand PN. I live in the U.S. and it has taken me years to get an accurate diagnosis. Try not to panic. You will eventually find someone who can help you.

Greeneyes

[janetm2]

Toel,
The side effects can be difficult at first but with time and a slow build up of the Gabapentin they did go away or at least are low enough to offset the pain. I am still working although it has been tough as I went down gradually to 5 hour days with Weds off until surgery using what leave I had. Since then took 3 months off for the surgery getting some time from a leave bank, borrowing and also taking leave without pay from the family leave medical act (FMLA). Still using FMLA for treatments, doctors and pain days or hour. Fortunately with just less than 3.5 years to retirement I think I can do this using the FMLA. I do believe there is hope and I hope you find the start towards getting the help you need. Fyi I also have FMLA for my chronic foot pain as well and it is hard to say what I take more time off for which ailment but it may be the foot pain again at this point which means the nerve pain is lowering and less impact on work, etc. Take Care
Janet

[Violet M]

. Can you take these without getting really ill?

Can people really keep a job with this problem? I mean, can you live a fairly "normal" life?

Toel

Some of the drugs have very few side effects but it depends on the person. The disadvantage of not taking them is that your brain can get into a cycle of pain and you can have permanent changes in the brain and spinal cord. You can look at them as a temporary solution until you find the right treatments.

I could not have kept a job and I did not live a normal life before I had surgery and for many months after surgery but now I do. Many people do get better and are able to live mostly normal lives.

Violet

[catherine a]

I too didn't work for a very long time (3 years) during my various treatments. I only returned to work 3 months after I had nerve release surgery. It was tough going for a long time but I gradually worked up to 5 hours per day.
Many tears were shed during that time and my work colleagues deserve a medal for putting up with me. I recommend you see a Psychologist and pain medicine specialist while you search for that retired doctor who wrote about PN.

He just might point you to the right people. Yes Toel, you can lead a normal life again. I do. Pain is not 100% cured but I do have a normal life again where once I had now quality of life. Keep positive. Good luck with the search for a doctor. Here in Australia the specialist who does PNE surgery is a Gynecologist but he also has male patients.

Catherine