Need advice on getting diagnosis

[Twin4Life]

Hello,

I am looking for advice for my sister. In October of 2023 she fell down the stairs and injured her tailbone. She did not go to A and E, which in hindsight was a mistake. At first she was experiencing severe pain in her tailbone/coccyx and could not sit down for very long. After several weeks it improved but never went away. In December of 2023 she began developing more symptoms including but not limited to: pelvic pain (vagina, perineum, urethra etc), persistent sexual arousal, extreme sensitivity in pelvis, burning when urinating, difficulty urinating, diarrhea and/or constipation, feeling like there was something lodged in her urethra. She went to the doctor and was prescribed antibiotics for a possible urinary tract infection. The medicine did not help at all. By January 2024, her symptoms had worsened and included: pain in the lower back, pain in her legs, tingling in her feet, pain in her abdomen, and etc. By February 2024 her symptoms were even worse and included, burning pain in her feet, extreme sensitivity in her feet (she wears slippers all the time now as she cannot stand the feel of the floor), increased pain in her abdomen. Now in March 2024 she is experiencing burning pain in her calves and shooting pains down her legs.

For the past 3 months we have been to countless medical appointments. She has had multiple blood test and an ultrasound of her bladder, which were all normal. An MRI of her coccyx and her lumbar spine. She was told she has swelling around her coccyx, the coccyx bone is bruised, she has a small bone spur on one of her sacrococcygeal discs displacing the ganglion impar (which the doctor was weirdly unconcerned about), and she has muscle spasms in her lower back. However, she has not been diagnosed with anything. And, the only treatment she has received is one month's worth of amitriptyline which she cannot take with her other antidepressants as it is unsafe (I have no idea why the doctor prescribed this and I am angry about it), and a referral to see a physiotherapist who gave her mainly exercises for the cervical spine (i.e. neck) which isn't helpful for the lumbar spine or pelvis.

I am unsure what to do at this point. She needs a real diagnosis and treatment. She believes she has pudendal neuralgia and has told multiple doctors and the physiotherapist this. But, no one will take her seriously. If anyone could give me advice on what to do next it would be much appreciated. I moved to this country with my mother (who is British) from the US about a year and a half ago and have no idea how to navigate the NHS. I am also willing to look into private health care if I have to. So any advice about that is welcome too.

[Jobie18]

HiThis sounds very much like my experience and symptoms and I have Pudendal Nueralgia.

So I had the same experience and saw several doctors and physio therapist who were useless.

What I did and this is going to be your best call if you stich to the nhs is print out the "Nantes Pudendal Nueralgia critea" and any official Documents regarding PN you can find and physically take them to you doctor and show them . I showed my physiotherapists documents and I asked her to email my doctor to get them to investigate, that seemed to make them pay more attention. What you need is to ask the doctor to refer you to pain management team this is were hopefully you'll get to speak to someone who knows what they are doing in my case a nuerologist/surgeon and a ask to be referred to a nuerologist. Make sure you or someone goes with your sis to all appointments to add pressure. Unfortunately the waiting time for any app in the country is months if not years on the NHS. So I'm sorry to say but if your sister does have PN its rare that is will be cured, the route she will be offered is nerve blocks and nerve ablation where the pulse electrocute the pudendal nerve in the hope it will recover and go back to normal somewhat. It has a low success rate and in my case made things a lot worse. There is a surgery called decompression surgery where they cut away tissue from the nerve its a pretty major surgery again with no so great results I believe performed at the nante clinic in France. Unfortunately I've not heard any great success stories with either if these procedures. If I had a ton of money I'd look into platlet/stem cell injections near the nerve. I've also heard of one guy who had a morphine pain pump fitting to his lower spine that dripped morphine to the nerve but sorry I can't remember what the name of the device was called I believe that was in the states. If you are going the NHS route you'll need to really get tough with doctors, get correspondence in writing with emailing and keeping a record of everything. I had 2 years before u got my Nuerology app and nerve ablation and to be honest they were both a waste of time. The only thing I've found that helps is to stick to a very strict keto diet sometimes pure carnivore as taking all carbohydrates out of your diet puts you into heavy ketois and that calm down your nervous system and reduces inflammation big time. Discovered by Dr Atkins when treated epileptic children who would have fits all the time (worth watching a few vids on "Dr Ken Berry, Dr Chaffee etc". Ice packs, don't do kegel pelvic exercises!! Look at stretching the sacrotubeous and spinal ligaments they are the two ligaments most commonly found to squeeze the Pudendal Nerve. Hot Epsom salt baths, lots of collagen.

I truly wish your sister all the best and she's lucky to have such a caring sister. If you would like to talk more my email is [e-mail] I'd be happy to have a chat if you just need to ask anything.

All the best x x

Jodie

[Twin4Life in reply to Jobie18]

Thank you for your reply. I will take what you have said into consideration. However, I do not understand why a keto diet would help nerve issues. Furthermore, it is not really an option for my sister. She is a very petite individual who does not have any weight to lose and suffers with low blood sugar issues. She is also at increased risk of heart disease due to genetics and it would be bad for her to raise her cholesterol levels with the keto diet.

[Jobie18 in reply to Twin4Life]

With all due respect I think you should do some more research on the latest dietary advice for heart health and diabetes.

Diabetes is a condition where people are carbohydrate intolerant All food except animal products and a few veg are high carbohydrate.

I personally and a few people close to have adopted this diet and seen miraculous results.

Cholesterol is the only fat the body knows how to process and there are 2 types of cholesterol one being HDL which is beneficial when raised the other is termed bad on shady research which is now being challenged by leading cardiologists as you will see if you watch the link I have put at the bottom.

People do not just do the keto diet to lose weight they do it to combat major health issues, you would just need to make sure you keep you calories up in order to not lose weight if that was a concern.

I thought the same myself until I did a lot more research. Big pharma and agriculture fund a lot of these nonsense narratives so personally I listen to people who are experienced Nuerologists, Cardiologists etc and read peer review studies. My own nuerologist agreed this was the best diet i could do for my long term nerve health, nerves are sheathed in fat made from saturated fat only.

Your gp has no training in nutrition and gets paid to write prescriptions.

Sorry but 9 out of 10 times this is the truth so if they deter you from this diet they are ignorant of what it is and how it works.

I truly wish your sister all the luck with her health journey and hope you'll at least take some time to research this further.

Diabetes diet guide

diabetes.co.uk/keto/

Interview with a cardiologist reg keto diet

m.youtube.com/watch?v=nVDo0...(Not working as expected?)

National Institute of Health Study

ncbi.nlm.nih.gov/pmc/articl...

[Twin4Life in reply to Jobie18]

I don't think I explained my sisters blood sugar issues very well. Let me try and be more clear. My sister is not diabetic. She is not even pre diabetic. (She was tested a few weeks ago.) She is just a very petite person who does not always eat very much and therefore her blood sugar and blood pressure can drop sometimes when she has not eaten enough.

[Jobie18]

If you go private I'd recommend these people not from personal experience as I've not been myself just going on a lot of recommendations. Its expensive and I know from correspondence with them that the initial consultation for PN will most likely be a package of a consultation with a pelvis osteopath/chiro, they'll want to take xrays of the pelvis and I believe an appointment with a lady who does physical therapy, internal trigger point therapy etc. This is around £1000 londonpainclinic.com/our-se...

[Mimi1967]

HiJust a thought on the Amitriptyline I have Bipolar and was prescribed this for my Pelvic Pain. In small doses I found it ok so 50mg is fine, and didn't effect my depression. It's used in higher doses for depression, such as 150mg. I take Naproxen, Pregabalin and Cocodamol and find it takes the edge off. It's really hard coping with any continual pain, but like the above person explained persistence is the key. You could also seek help from the PALS team (patient advice and liaison service) They can sometimes help you see the right person. Good luck to your sister and I hope she gets the help she needs xx

[Jasper1002]

I have interstitial cystitis and ankylosing spondylitis. I take 50mg of nortriptylene at bedtime. I have all your sister's symptoms. My tailbone has been injured a few times over the years. In 2009...I wasn't able to lift myself out of a chair bc the pain in my tailbone was so bad...I used a cane to pull myself up. Three pain blocks finally helped. The persistent arousal was exhausting. It does sound like pudendal neuralgia. All the same symptoms. Maybe ask her doc to try gabapentin.

[Jcwy in reply to Jasper1002]

I also have interstitial cystitis and endometriosis. The medication you’re taking is for i.c?

[PotteryQueen]

HiI'm so sorry to hear about your sister, her symptoms sound miserable.

I am currently under investigation for prudendal neuralgia . I had some of the earlier urinary symptoms your sister had 2 weeks after a caudal epidural for 3 prolapsed lumbar discs. I followed a bladder diet and had various urinary investigations all of which were negative. I always believed it was a prudendal nerve problem... eventually my GP referred me back to the team who did my epidural. They agreed that it was likely to be prudendal neuralgia and have referred me to the gynaecology team, who I guess will do more tests.

However I had my amitriptyline increased to 20mg ( I was already on 10mg for my back) and my symptoms have all but gone.

I understand that your sister cannot take amitriptyline as they interact with her existing medication. However there are other drugs she could try such as pregablin or gabapentin.

I would recommend the following

1. Ask her GP for a gynaecology or neurologist referral to test for prudendal neuralgia

2. Make an appointment with her psychiatrist to look at the potential of adding medication such as amitriptyline/ pregablin to her existing medication.

3. Look up exercises that help prudendal neuralgia

4. Sleep with a pillow under her knee when lying on her back in bed or between her legs when lying on her side, this will help to take pressure off the prudendal nerve.

Good luck!

[edythe]

This sounds like very bad pain your sister has been having and definitely requires professional attention. It’s unfortunate that this has been going on for so long already.

As the whole problem started with an injury to the coccyx, I suggest it would be definitely worthwhile to have an expert examine this: an osteopath or a specialist physiotherapist would be able to do this. Make sure that you get recommendations. You can find a list online and you can also use the search function on this website to find physios who have helped others. Probably in the UK you would need to go private in order to get treatment without much delay.

In my experience there are now physios who are very experienced in dealing with women’s health, pelvic pain and resulting problems. GPs, gynaecologists often don’t know enough about these problems - it’s not part of their training.

I agree with the idea of the pillow. There are also mobility shops where you can buy cushions to ease sitting. Try out warmth (hot water bottle) or cold (ice) A TENS machine may be helpful. These can be bought at Boots. Just a few ideas…. Maybe there’s something to latch on to.

Patience and determination are needed unfortunately..

All the best!

[Twin4Life]

Thank you for your reply and all your ideas. I will look into some of them.

[Konagirl60]

Where are you and your sister located?

[Mayanne]

you can check on YouTube for Dr Micheal Hibner. He is a specialist in chronic pervic pain.

[asread]

Hi

Sounds similar to what happened to me.

You need to ask to see the pain specialist clinic and pelvic physio or pelvic health, similar to what the person mentioned above.

Look online for some cushions for relief of pain and also heat mats and ice can help.

D Mannose tablets are useful for preventing UTIs, avoid sugar and alcohol, cotton underwear and loose clothing.

Other posts on diet for pain might be useful also.