Questions?????: Hi Fellow Sufferers, I... - Pelvic Pain Suppo...

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Questions?????

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Hi Fellow Sufferers, I am no different than most of you on here,I suffer severe Pelvic Pain. But I have a couple of questions I would like to ask,that I'm not đź’Żsure of. There mainly for people with PN.

1,how was you diagnosed with PN?

2,What are the symptoms of PN?

3,What do/have done to help with the pain?

4,Has anyone had nerve blocks ,and they've worked? And lastly.

5,What professional consultant do you see Gynaecologist/Gastroentrologist/Urologist.

I'm just a bit confused about some stuff I've been told by different people.

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7 Replies
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Luvpups profile image
Luvpups

Hi there

I’m so sorry that you are experiencing this horrible pain!!!!

I went to see a specialist in AZ

Dr. Hibner I saw his associate Dr. Costellanos they use a nerve block for diagnostics and treatment!!!! Basically if your pain is gone and you feel numb you are testing positive for PN

The nerve blocks didn’t last for me but while I felt numb it was wonderful!!! They also prescribed me some suppositories that really work great!

I have tried everything that they offer except surgery my PN is so multifaceted I’m most likely wouldn’t be a good candidate!

Look at their website these Drs specialize in pelvic pain specifically nerve pain!!! Look them up and make an appointment!

Please ask me any questions you have!!!

Dawn

• in reply toLuvpups

Thank you,I'm just off to bed,but I will reply to you properly tomorrow,and I will look that up.

• in reply toLuvpups

Hi there,Sorry to take so long to reply. Anyway I can't make an appointment with those doctors as I'm from the UK. But whether it be UK,or USA,Pelvic pain is the same anywhere,very painful. Now a lot of people talk about flare ups,I don't have flare ups,it's constant,or chronic. The only relief I get is when I'm asleep,and I have to take a tamazapam to get to sleep.

I have been having Physio but not long enough to see any results. I've been suffering this for well over 12yrs now,I was told in the first place it was IBS,but I've never heard of anyone suffering IBS as bad as this.

I'm really trying to get to the bottom of a proper diagnosis,now I've had a nerve block,they don't give them for IBS,but I couldn't get the doctor to commit himself. I've been seeing Gastroentrologist,maybe I should be seeing a Gynocologist,or urologists?? I've tried every medication to no avail,Diazapam help,because they calm me,and I can take them as needed,example when the pain gets to a point of fear I take one.

Sorry to rant on,but once I start I get soooo wound up about having pain all day every day.

bantam12 profile image
bantam12• in reply to

No matter who you see you may never get a diagnosis because with these sorts of things they sometimes can't put a label on what's wrong, it's a case of managing the symptoms as best we can. I wouldn't pin much hope on a urologist, the ones I've seen have been pretty useless, gynae possibly a bit better but again I've never had much luck.

Jb44 profile image
Jb44

Hi,

Sorry you are experiencing this. I have PN since 2012 from an extremely difficult childbirth of my daughter that left with severe nerve and muscle injuries. Eventually I found an excellent urologist who specializes is Pelvic pain and he diagnosed it by touching the nerve. I’d instantly feel intense pain. Also he did a pudendal nerve block which removes pain for about 3 weeks. I had to take it easy as usual, of course but it was nice while it lasted. I haven’t had a nerve block in a long time but I get relief seeing him (Dr. Jerome Weiss in San Francisco) and seeing a DPT who specializes in pelvic pain. They both use trigger point release manual therapy to releive the tension that my very tight pelvic floor muscles exert on the nerve. I then do my own physical therapy at home aimed at releasing the muscles. Sometimes it works better than others and that can be frustrating. Also a microwaved hot compress helps anlot and I use it while lying in bed at night. Bought on amazon. Dr. Weiss may be able to provide you a referral in your area of the UK. His staff is happy to talk. I hope some of this may helps!

• in reply toJb44

Thank you very much,you've been a great help. I will look into Dr Weiss for recommendations in the U.K.

Betsy-Blue profile image
Betsy-Blue• in reply to

Hi, I live in the UK too, NW near Southport. Did you manage to find any help from Dr Weiss? Re: Manual Therapy in the UK. Kind regards.

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