a year of undiagnosed pain, lowest I've ever been, any good private doctors?

[njgirl20]

Some of you may have read my last post but, to cut a long story short I have been in almost constant pain for over a year now and its really taking a toll on me. only thing ever found in tests were adhesions and doctors have been so reluctant to help me I feel like I am cursed. How can it be possible that EVERY doctor i see shuts the door in my face and just has no sympathy or empathy and doesnt want to help. I am going to be 21 in a few weeks, and I'm in my second year of uni. I also have a part time job and I am finding it so so HARD to cope. I am so upset every single day, when I get an essay assignment I sit down to try and do it and just end up crying from the pain from sitting (always worse when sitting) and so sad because I really want to do well, but feel like this thing is really holding me back.

I AM LOSING ALL HOPE. honestly this is the lowest I have ever felt and i just feel like I cant even talk to my family about it anymore because they have had enough and they just pretend like its not happening. i am struggling so much i feel like i am suffocating and drowning and like the world is crashing down on top of me. I need a way out of this I cant deal with it anymore. This pain has destroyed every single aspect of my life, friends, family relationships, ended a relationship with my boyfriend. Also not doing well at uni and constantly have to keep asking for extentions and special arrangements, which as you can imagine is really embaressing and uncomfortable having to let my teachers know all the time that I cant do their essay because I've been in too much pain etc :(( </3.

can someone PLEASE PLEASE recommend me a good private pelvic pain doctor. if you are not allowed to reply publically maybe inbox me directly. seriously you have no idea how much you would be helping me! I'm trying to work alot despite my pain so I can save some money to see a private doctor because the NHS is a joke.

thanks for your time, and sorry for the rant, but please do send me recommendations. I live in London and would be happy to travel to any part of london for a good one.

wish you all the best xxx

[Bonni1]

Private doctors are worth the money

[njgirl20 in reply to Bonni1]

So do you know any good ones then?

[Bonni1 in reply to njgirl20]

Knights bridge

[maymee4]

I feel your pain as well. I have been dealing with pelvic pain for over 2 years and now its in my back with numbness in both legs. What sort of tests have you had done besides finding the adhesions? I went through pelvic floor therapy which helped a little. Have you had mri or catscan done? Possible endometriosis?

[njgirl20 in reply to maymee4]

Yeah i too get back pain and lower leg numbness! Ive had a lap, mri, xray, 10million ultrasounds and standard blood and urine tests, std tests. All always clear. Doubt its endo as pain does not worsen with period. What was the cause of your pelvic pain?

[Alyssa5]

Njgirl,

I too feel your pain and suffering; my pain started out of the blue as well almost two years ago. My pain began after having a csection; I was diagnosed with pelvic floor dysfunction but although I've tried, pfpt, Botox, nerve blocks, medication, nothing had taken away all my pain. I feel so let down by the medical profession; it seems that they know how to treat acute pain but not chronic pain. They give up and it leaves us feeling so hopeless.

I too have sitting pain (my doctor called it neuropathy pain) on the sacral area, butt cheeks and thighs; it feels as though the area is burning and squeezing when I sit and when I stand the pain takes a while to subside. I am now dealing with centralized pain which means that the brain continues to send pain signals to the pelvic areas (rectum, butt, thighs, sacral).

[njgirl20 in reply to Alyssa5]

If you had a c section then your pain isnt really out of the blue i think- you probably have adhesions around that area which could cause the pain your describing.

When i had mine removed the pain was significantly reduced to nearly undetectable. Then it came back.

And the weird thing with me is i dont have endo,

Nor any previous surgeries befor the lap nor havw i tested positive for any infection (which are said to cause adhesions) So mine really is very strange as there is not a single

Event i can attribute this to, havent had any falls either. Soo strange :((

[Alyssa5 in reply to njgirl20]

I've had several tests done and nothing has been found to account for my pain. I have neural pathway pain.

[njgirl20 in reply to Alyssa5]

😞😞 hope you get relief soon! What tests have u had? And also wherr is your pain and whats it like

[Alyssa5 in reply to njgirl20]

I've had a colonoscopy, MRI, been seen by several dictors (gynocologist, colon rectsl surgeons, general doctors, spine specidlist, neurologist), have tried Botox, pelvic floor pt, nerve blocks with no relief. My skin in the pelvis area hurts when I stand (like an ache) and when I sit the following areas ( thighs, both butt cheeks, sacral area begins to hurt/ burning). It's kind of like when you are squeasing your fist that pain and I have to stand to relieve the pain. If I am laying on the side, I still have pain of my side of my thigh. They call it centralized pain which the central nervous system is going haywire or it is in alert (fight or flight) not on the resting side. The key to healing is to calm down the central nervous system which is very hard to do. I am working on that at the moment.

[Alyssa5 in reply to Alyssa5]

Oh and I get body aches here and there; I also feel as though my arms are burning on occasion. Which means the body is stuff on the fight or flight response. And we need to calm it down.

[njgirl20 in reply to Alyssa5]

Wow thanks for the information. So what causes it and how can we calm it down?

[Alyssa5 in reply to njgirl20]

In a nutshell, in my case my brain assumed that I was in danger although it was a false response. I'll send you a link to a webinar..

[Alyssa5 in reply to Alyssa5]

youtu.be/fI8wFNgJf20(Not working as expected?)

[Alyssa5 in reply to njgirl20]

Most chronic pain syndromes fall into this category.. I've been doing a lot of research and there is nothing structurally wrong that is causing me this pain.

[Suzysheep in reply to Alyssa5]

Yes, this is what I've been told I have.

It's a bit like phantom limb pain.... It's very real, but there is no longer any injury.

[Alyssa5 in reply to Suzysheep]

Yes exactly..

[66crusader]

Mr Vix Khullar London. Harley Street.

[Els58-]

Hi, I think you have pudendal nerve injury. Watch private doctors in nantes (FR) and aix en provence(FR) I have 9 years history of pelvic pain, no pudendal nerve injury, no one knows, very hard time too. Best wishes!

[edythe]

Try a pelvic floor specialist PT. Here's the link to a list of specialists:pelvicphysiotherapy.com/lis...

In London I would try Maria Elliott. In London and Bristol there are specialist doctors. You can consult them privately as far as I know.

[njgirl20 in reply to edythe]

Thank you very much! Yeah maria elliot bas been recommended quite alot in this community

[Mary1222]

If you would like you're welcome to email me ([e-mail]). For years now I've been trying to help people locate doctors & providing one on one emotional support. I'm not a doctor or anything, just someone who has been dealing with this for years (2004-2006, some misdiagnosis within that time). I can give you some ideas on different things I've learned through my experience.

[Limemarmalade]

Vic Kullar is very good and you may also want to see Dr Barranowski who is a specialist pain management doctor for pelvic pain. I believe he works out of the London Clinic.

[Woodland16]

Are you in the states or overseas?

[njgirl20 in reply to Woodland16]

I like in london in the UK

[Suzysheep in reply to njgirl20]

Dr Andrew Baranowski is in London. He works both privately and for the NHS at UCHL.

[alansommer in reply to Suzysheep]

Is he good?

[Bonni1]

I'm from Belfast NI and my husband went to a private doctor

After 100 pound he is cured and on the right medication which he gets from the nhs doctor

[alansommer in reply to Bonni1]

Can you give me the name and contact of that doctor, please...?

[ladyintheloch]

Hi, I cannot definitely recommend the following Hospital Pelvic physio team as I have yet to have treatment there myself, however the Doctor who runs the clinic sounds really nice when I phoned here-

guysandstthomas.nhs.uk/our-....

I am not sure how referals work i.e. if you have to live in the area though.Here are som alternative lists of private and NHS Pelvic Physiotherapists

pelvicphysiotherapy.com/lis...

mutusystem.com/referral-to-...

I am also a member of a facebook group called Pudendal Neuralgia and pelvic pain UK, where you could get the experience of many members who will know what you're going through and London based Specialists, Best Wishes.

[unlucky2014]

Have a look at the Whiteley Clinic they have put on a symptom questionaire for Pelvic congestion syndrome see what that tells you and if it says your likely to have it. A consultant will phone you and gain information about your symptoms and advice you on if it sounds like PCS.

These days pelvic pain could be anything and can take a long time to find the right consultant do diagnose what you have.

[alansommer]

Did you find a good doctor? If you did could you give me his(her) contact, please? Its urgent!