Struggling to Live my Life

[Kat791]

Hi, I'm new here. I am 26 years old, and living in Essex in the UK. I am currently suffering from severe pelvic pain. I believe I have pudendal neuralgia and piriformis syndrome, but I have not received any official diagnoses. I am in pain 24/7, and currently receiving no treatments. I have been referred to pain management by the NHS, but have been told it will be months before I even get an appointment.

I fell down the stairs on my bum(probably about 6-7 stairs) and bruised my coccyx(literally bruised the bone) in October 2023. Two months later in December 2023, I started to develop UTI symptoms and persistent arousal. This has progressed into severe pelvic pain. I also have pain in my lower abdomen, lower back, inner thighs, shooting down my legs, and in my feet, which started in January leading me to believe the pudendal neuralgia is causing piriformis syndrome.

I can't do much anymore. I can't sit for very long or stand for very long without pain. I don't drive anymore, or go out really. In terms of self-help, I have been doing pelvic floor stretches every day for about two months, always sit on a coccyx cushion, and go on daily walks(I'm fighting through the pain). I also take 400mg of ibuprofen twice a day(not that it really helps). Everyday feels like a battle.

I am severely depressed, chronically stressed, severely anxious, and unable to live my life like I used to. I am at a loss for what to do at this point. I feel like life isn't even worth living anymore.

[Phaedra9]

I've been where you are too. There are medications that work to manage the pain for many people, but they need to be aimed at nerve pain. Ibuprofen won't touch it. Amitrypyline works for me. Your GP can describe something if you can convince them it's nerve pain . There is hope, don't give up.

[PN21]

hello Kat791,

I have the exact similar symptoms, which were initially ignored by all the doctors.

My recommendation after ca. 3 years of pain:

1- get yourself a good neurologist/neurosurgeon , pregabalin has limited the pain in certain areas (specially down to legs).

2- very important, there are pelvic floor physiotherapists, who understand this sickness better than many doctors.

3- keep working on pelvic floor exercises, it helped me a lot at the beginning.

4- pain management: I didn’t reach that level yet. However, it was recommended by all doctors I was visiting recently.

[Desperateforrelief]

I have been diagnosed with pudendal neuralgia, obturator neuralgia, coccydynia and piriformis syndrome. I was injured by transvaginal mesh in 2009. It is an extremely painful condition and I'm so sorry you're going through this. I was in bed for about 2 years, couldn't sit for any longer than 10 minutes. I used a wheelchair to get around for an additional 2 years, following the bed rest. I have tried various modalities for help with pain. In 2015 I had a pudendal interstim put in and it reduced my pain by 50%. It has been a long road, in 2022 I was introduced to radiofrequency ablation of the pudendal nerves. It has been a God send, reducing my pain from 5-10 down to 0-3. It has taken almost 2 years, but I have been oxycodone free for over 3 months. I am currently walking 2 miles a day/every other day. I have to be very careful as my muscles are in bad shape from being sedentary for 12 years. If I push too hard I get piriformis spasm (miserable). I had 2 PT's tell me my muscles were atrophied and wouldn't come back. They are coming back, but very slow progress. I still have issues with coccydynia because of the damage done, scar tissue, etc. It is being caused by uneven muscle tension. I find stretching exercises designed for the tailbone help.

I recommend you find out everything you can about your condition. Bring an advocate with you to appointments, not only do they help with memory back up, I have found the doctors listened better when my husband/or friend accompanied me. Good Pelvic floor PT's are a great help for pain and teaching you about your condition. There is hope. I am finally at the point where I have most of my life back.

Hang in there.

[Nothingimpossible]

Hi Kat791. You say you fell down the stairs last year and since the fall all these problems have arised. Have you had a xray on your coccyx? If not ask your gp to refer you for a xray to find out if your fall has caused a fracture. Let us know how you get on please.

[Kat791 in reply to Nothingimpossible]

Yes, I have had an x-ray of my coccyx, but it didn't show much. I then had an MRI, which showed that I have inflammation around my tailbone, a mild bone marrow contusion in my last coccygeal segement(i.e. bruised the bone), and a bone spur on a sacrococcygeal disk that is displacing my ganglion impar. The doctor I saw, who did the MRI, just told me to "stop sitting so much, start being more active, and you'll be fine in three months". It's been two months since I saw him, and I do not feel any better. I feel worse than I was two months ago, despite doing exactly what he told me to.

[Perry1270 in reply to Kat791]

I am in the same situation as you. Almost 7 years…I did start using vaginal suppository with diazepam.. I get them at a compound pharmacy. You will need a prescription. The dr. prior to that told me to join a gym. I cannot believe some of the health care not available to females. Hope you can find some relief.

[Nothingimpossible in reply to Kat791]

Bless you. I hope you get a quick appointment soon and they can sort you out. xx

[anna1234567]

you might also look into symptomatic Tarlov cysts. I had a lot of the same issues after a fall on my tailbone.

[Normie-Orms]

I'm sorry to hear you are suffering with that at uor age. I'm 70 so its different for me. I'm in Australia living with my son and here I can get legal htc to smoke in a vape which really helps. Its the one thing that lowers the the throbbing and also swimming in the sea or bath in a cold pool. Hope this helps hon. Sending you love and hugs. Norma

[Tonibrown]

I’ve had similar pain to yourself been more than 4 years now,I’ve lost my job of 14 years which I loved because no proper diagnosis. started seeing a nhs bowel physiotherapist now,been given exercises persevere with them I think they’re slightly helping,not found any pain killers that help.now using medical cannabis,which seem to be the only thing that has helped with the pain,I feel less tension within my body,hence more relaxed,which causes less pain,which has helped with standing and sitting longer for myself

[Konagirl60]

If you go on Google and type in Pudendal Neuralgia Hope press on the List of Doctors. There is a list of European doctors. Read it and you may find a doctor who can help you.

Medical information

[Lolliesandcakes]

Hi Kat! Im so glad I found your post. For the past 2 years since I fell over and dislocated ny tailbone I have had PGAD and pain in pelvic area. I have seen multiple specialists who all say its not related ?!! Im on a myriad of medications howevet do have a neurosurgeon appt in a few weeks. Not only is this debilitating as it is 24 hours a day its so expensive for investigations that seemingly go nowhere. I like you was at breaking point last week and severe anxiety and depression. I broke down and sobbed at my GP, I think this has actually helped me with doctors taking it more seriously. Physical symptoms are always easier to treat. Noone understands your pain and frustration like you do. Keep pushing, keep advocating and please please dont give up. Lets support each other and remember we get you here so vent vent vent. Xxx

[Kat791 in reply to Lolliesandcakes]

I'm glad to here you're being taken more seriously. I have had numerous doctors tell me its my mental health causing the problems, which is very discouraging. I hope it goes well with the neurosurgeon, and that you get some answers.

[Kat791 in reply to Kat791]

*hear

[Lolliesandcakes in reply to Kat791]

Hi Kat ive also just been referred to a urogynecologist on Tuesday after much pleading with doctors. Ill keep you updated on any more info that I get to see if maybe one can help you. Its not in your head. Its real and its very distressing to experience. My doc said as its very rare its something many doctors do not understand how to respond or help. Here for you

[CatsandCars]

I'm so sorry for all your suffering. Others have given you great suggestions. I would just like to share my experience with taking a lot of ibuprofen. I had a lot of neck issues, and then chronic pelvic pain. My pain doctor told me not to take too much ibuprofen, but he didn't give me anything better for pain. After a few years of taking about five per day, I developed esophageal pain and gastritis that has improved somewhat since discontinuing the ibuprofen, but it won't heal all the way. So in addition to not being able to take it for pelvic pain or neck or back pain (instances where it would really help me), I cannot have a lot of the food I enjoy. No coffee, chocolate, tomato-based soups or sauces, my favorite salad dressings, etc. It can also cause bleeding ulcers and kidney failure when taken every day. It might be better to ask your GP for something else for nerve pain, perhaps gabapentin, and save the ibuprofen for occasional use for things that it really does work for. I hope that you find some relief!

[Twin4Life in reply to CatsandCars]

I hear what you're saying about the ibuprofen. It is a problem I have been mulling over for a while now because my sister is suffering from pelvic pain and has been told she has inflammation around her coccyx. So I told her to take ibuprofen for the inflammation. However, I am worried about the long term effects. But, the problem is that other than NSAIDs like ibuprofen, there is nothing over-the-counter that you can use to treat inflammation. So then the only other options are to try to reduce it naturally by exercising more, reducing stress, and by eating an anti-inflammatory diet.

Exercising more is difficult when you are in pain. And, it only does so much. My sister is exercising more but it is difficult. Reducing stress is not an option for my sister. She has severe anxiety that is being made worse by her physical health issues, she is unable to do a lot of things that might reduce her anxiety (like playing video games because it has become too painful), and my mother is being an absolute pain and has decided she wants to move house in the next few months which is just a whole bunch more stress. I could try to get my sister to change her diet, but then that would mean giving up her favorite foods anyway. It really is a difficult problem.

[CatsandCars in reply to Twin4Life]

I couldn't agree more. It seems to be lose-lose. The only other thing is to see if your respective doctors can suggest anything else, but sometimes they don't. Best wishes to all of you.

[VFR1200]

try Dr Greenslade at the Bristol Pain Clinic he is one of the UKs leading specialists in this area, I highly recommend him. He has helped me tremendously.