So I finally went to see Dr Baranowski

[paperflowers55]

Well... after 6 years of on and off pain and remission and relapse I finally went to Dr Baranowski. He is mighty expensive and I didn't expect him to diagnose me, I only wanted his letter for my useless low-IQ GP so he finally does something !

He was not able to tell me why I have pain, only told me to switch to "gold standard" Cymbalta. Sure, I'll try it ! Why not ?

He suggested PT and a psychologist. I will try and see how in god's name I'm supposed to get this on the NHS, even though I pay 1.6K in tax each month and get 0% quality healthcare.

People say he is very thorough but I did not find him thorough, all he did was check for reflexes, a quick look at my spine, and examination and some talk about some muscle groups. That's not very thorough. He's not the friendliest of people but I don't need an empathetic doctor personally, I need an efficient doctor who treats pain properly and tries all the medications under the sun.

How have you found him?

Oh and I refused his offer for nerve blocks. I have more interest in ketamine infusions than nerve blocks right now

[JH19]

Thanks, I’d been considering seeing him. Don’t think I will bother! What’s cymbalta?

[paperflowers55 in reply to JH19]

an SNRI, it is commonly used for nerve pain but not first line of therapy because GPs are obsessed with the very cheap amitriptyline

[janeneil]

I had a similar experience and for someone who is meant to be the pelvic pain specialist I was a little surprised with his lack of specifics. i too declined the nerve blocks.

In terms of the cymbals, I was on it for 6 months following his advice to go on it. It was hard going on, was very hard coming off and had side effects whilst on it. I needed it at the time as my pain was severe to the point where I could not leave the house, and I do not regret taking it, as it took the edge off the pain, but I would not be on it long term and prepare yourself for a rough ride whilst you are trying to come off.

[paperflowers55 in reply to janeneil]

I had just as horrible time detoxing from Amitriptyline so am not scared of withdrawals.

I'm sorry to hear it didn't help long term ... have you had any support from any other specialists?

[Hidden in reply to paperflowers55]

I took Amitriptyline for 5 weeks. It caused horrific issues in the pelvic floor... pain and spasms. It caused me to have vaginal and rectal pain which I didn’t have before taking this drug. I had bladder and urethra pain. It’s ruined my life. Also caused severe unrelenting anxiety and I felt poisoned. I still do.

[1980natty in reply to Hidden]

I had the same problems on nortriptyline... I’m now still hypersensitive to all pharmaceutical drugs. It ruined my life also. I’ve never got over the pelvic pain. It set my PN off onto an all time high I’m still struggling big time and I’m 2 years on!! How are you now?

[Charles555nc]

You should try internal or pelvic therapy where they go in through your rectum and gently press on trigger points/scar tissue. You can do it yourself, on the outside (skin) and inside. intimaterose.com/blogs/vide.... Ketamine is great but isnt a solution, imo.

[paperflowers55 in reply to Charles555nc]

Thank you I will have a look

[swarke22]

I had pudendal decompression and still no relief. Found out that it is Pelvic floor dysfunction. I’m in my ninth year! I’ve been on a doctor road show. Now I have turned to isa Herrera book Ending Female Pain. With exercises self massage , reverse kegel etc. I have just started and yet I know that this is what will help me she had the same thing and is a physio who has helped tens of thousands of women cure themselves. Private message me if you need to know more. I’m in the U.K. she’s in New York. She is amazing with what will help you. I have joined her internet course which she has once a year, but I was desperate so I joined it. You have to give yourself and make time to do the exercises but she CURES women or at least gives them the power to help themselves.

[paperflowers55 in reply to swarke22]

I am unfortunately very much against that surgery and I never found anyone online who got cured from it not even on the french forums (Nantes french patients) that I translate with google ... Pain is an output of the brain so a surgery cannot cure chronic nerve pain unless there is something structurally wrong ...

I will buy that book, thank you for sharing

I do believe very much in PT !!!

[Hidden in reply to swarke22]

So are you saying your issue is pelvic floor dysfunction and your nerve was never entrapped? Why did nobody confirm this before surgery? Just wondering that’s all.

[swarke22 in reply to Hidden]

I too have had surgery no results. Now taking Isa Herrera course on pelvic floor dysfunction.

[1980natty in reply to swarke22]

How are you now love? Are you better? Xx

[swarke22 in reply to 1980natty]

No. I didn’t have it done because they’ve discovered I have osteitis pubis. I need an operation with an orthopaedic surgeon. Just waiting for MRI’s. And then a decision. I hope they sort it soon though. Ten years is too long.

[1980natty in reply to swarke22]

Oh my goodness it really is too long. It’s outrageous. There needs to be a campaign to fight for people like us! X

[swarke22 in reply to 1980natty]

That’s very true. I feel as though I’ve been totally ignored. When I had my intussusception of the bowel(fallen inside me) I told them for five years I had an Intussusception. It took five years before a pain doctor diagnosed it and by that time the damage was done. The weight of the bowel on my insides forced my lower abdomen to split internally. I have a huge stretch mark half an inch wide and deep. I pray the orthopaedic surgeon can help me. Hey ho see what 2021 brings.

[1980natty in reply to swarke22]

I pray for you too! Professor scholbach in Germany is supposed to be able to diagnose everything! Apparently he’s a genius! I want to see him eventually I don’t start to see improvements xx

[Rossie21]

Thank you so much for posting paperflowers55 it is very informative and helpful .

[SuzyQ]

I would just like to say that Dr B saved my life; quite literally! He’s an incredibly knowledgeable expert in the field of Pelvic Pain.

I first saw him in 2008, and I still see him or a member of his team every 6 months.

I don’t want to get into my full history; it’s enough to know that I have been in pain for 25 years.

If it hadn’t been for Dr B and his determination to help me find some relief, I honestly don’t know where I would be now.

[paperflowers55 in reply to SuzyQ]

Hi SuzyQ I am very happy to hear he has helped you I don;t think he is a bad doctor, I simply wanted a more pro-active attitude with regards to medication. I am looking at starting low dose naltrexone soon (without telling my GP as he is very unhelpful and does not even respect me as a patient)

[2977reader in reply to SuzyQ]

Hi, just came across your post about Dr Baranouski on this site. He has suggested the injection. Did he perform this on you? Which medication worked for you? Wonder if you know if you have PN or PNE and how this is determined. Thank you so much, a PN/ PNE sufferer.

[1980natty in reply to SuzyQ]

Hi Suzy, would you be happy to speak with me briefly please? Xx

[SuzyQ in reply to 1980natty]

How can I help you? Happy to try 🤗

[Peanut67]

Much the same as you but I am on nhs.. just offered a sophisticated CBT that has made no difference to me.

Yes has no people skills and I felt I was interfering with the time he went home.