I made a post a week or so ago about my pelvic pain. My symptoms started in December 2023. It started with UTI symptoms and persistant arousal. By January I was getting burning pain in my clitoris, urethra, and vagina, and some stabbing sensations, as well as feeling like there was something stuck in my urethra. Also in January I started to get severe pain in my lower back. In February I started to get tingling in my lower abdomen which then also turned into burning pain, and also starting in February I started to get pain shooting down my legs. Now I have started to get severe pain in my hips that spreads down the back of my leg to just above my knee. I am in so much pain, and just extremely stressed all the time. I been to my GP so many times I've lost count. They are literally sick of me. I am on a wait list for pain management through the NHS, but likely won't get an appointment date for another month. I was prescribed pregablin two days ago, but have not started it as I am worried about getting addicted to it.
I can barely sit anymore. Standing is agony too. I cry a lot, and feel very scared because no one is helping me or telling me whats wrong with me. I don't know what to do anymore. I've tried pelvic floor stretches, coccyx cushions, walking for 40-60 minutes everyday, Tylenol/paracetamol, ibuprofen, and naproxen, B12 and D3 supplements, and nothing seems to help. The pain just gets worse, and the doctors don't care. I've looked into seeing a pelvic floor physiotherapist, but the closest one to me is 40 miles away and a two hour drive, which would be incredibly difficult for me to get to. I honestly just don't know what to do at this point. I feel like I'm losing my mind.
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Kat791
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I am an elderly male so suspect our problems will stem from a different source. I have pudendal neuralgia and it took 8 months to diagnose, almost 5 years ago. I was in so much daily pain I didn’t want to live. A sympathetic GP persuaded me to try Pregabalin. It gradually eased my pain to a point I got my life back. Please try Pregabalin. I take 150gr twice a day. I don’t experience any side effects. I don’t believe I’m addicted to it though I’m addicted to NOT being in tremendous pain, if you see what I mean. Once again, I would try Pregabalin. Good look and take care.
I’m very sorry to hear about the way your pain has been getting worse over the past weeks/months. I hope you soon get an appointment with the pain clinic. Unfortunately many GPs still don’t know much or indeed anything about pelvic pain. I’m glad to see that Yorkdafs has had experience withPregabalin. I cannot help there at all.
What I can suggest from personal experience is to try and find a way to get to the physiotherapist you write about despite your difficulty with sitting. My first physiotherapist also lived about 40 miles away and it was really difficult for me to get to her at the beginning. Will you have to use public transport? But it was a game-changer for me. I wonder if there might be an osteopath nearer to you who might be able to discover if there’s a problem with your coccyx.
As far as pain reduction is concerned, have you tried using warmth (hot water bottle or cherrystone pillow) or cold (ice or cold compress). A tens device might be of help. I suggest not overdoing exercise and not doing stretches because it sounds as if you may need more muscle relaxation and work on the fascia. That’s where a PT should be able to help. Can you go swimming in warm water? B12 and D3 supplements are certainly a good idea but these will take time to have an effect, I’m afraid.
What about trying to find someone who lives in your area who you could talk to via this website? Have you got good friends and family to support you?
The only support I have is my twin sister, and I am incredibly grateful to her. I don't have any friends near me, and the only other family with me is my mom, who would rather bury her head in the sand and pretend everything is fine then actually help me.
So sorry to hear your story Kat I do understand as you have the exactly the same symptoms as me.
I also put of trying Pregabalin for 3 years but started it last week and I am already feeling relief which I am so surprised by, so far I have no side effects from the medication although I am on a low dose which will slowly be increased every 2 weeks but like the other chap said I would give it a go at this point.
I am also in the UK and went through the pain management team, you'll most likely be offered nerve blocks alongside Pulsed Radiofrequency on the nerve, they do it all at the same time and the PRF will usually be performed through your coccyx area. Unfortunately I didn't really do anything for me but it may work for you.
I would definately think about finding a pelvic chiropractor and experienced pelvic PT. Be careful to not do kegel type stretches as your pelvis is most likely hyper tense so you'd need to do relaxation techniques instead. I would also keep changing your doctor until you at least find one who's sympathetic, good luck finding one thats even knows about this condition!
Personally I wouldn't bother spending any money on nerve blocks privately as some clinics will charge you £1000 to get it done and they last a few hours, total rip off. I have heard good things about the botox injections though.
When you do get your appointment ask them what's available to you via the nhs. ie: botox injections, fitted pain pump (think you have to have this done privately) and PRFrequency. Ask as much as you can in that session because as soon as its done you'll probably have to wait 6 months before you get another appointment.
Look at videos that stretch/strengthen the ligaments that could be pinching the pudendal nerve. Obturator internus and sorry I can't remember the other one.
Personally I would avoid sitting at all if this causes you pain. I have got myself a rattan sun lounger (like an adjustable bed) that I lay on in the front room as any other seat is too uncomfortable. Ice packs too and lots of them.
I've also tried it all from ALA, b vits, lions mane mushroom, valerian, hops, every pain killer under the sun all a waste of money if you ask me although bvits are good if you don't eat lots of meat.
The only thing that's worked for me is to keep my body in strict ketosis (highly recommend watching some videos on you tube about this (Dr Ken Berry) which helps with nerve pain and inflammation elsewhere.
This usually sounds mad to people who haven't looked into it but doing this way of eating (Low carb/Keto) took me from being suicidal and unable to stand for longer than 2 minutes at a time to walking around the neighbourhood and being able to move around the house again. I know this is true as as soon as I come out of ketosis the nerves in my chest, chin, hands start firing off again as soon as I get myself back into ketosis they stop so I'd definately spend some time researching this.
I am so sorry you are dealing with this. It is a horrible way to live. I also have been dealing with this pelvic/sitting pain for a long time. Doctors don’t know what to do with us. Nerve blocks helped me for awhile, but they have stopped now. I take an epsom salt bath daily — and lay flat with a pillow under my legs, or on the side that doesn’t bother me the most with a pillow between my legs. That’s the most relief I tend to get lately. I am on a lot of muscle relaxers as well as internal suppositories. Ask for them. They help take the edge off at least. Internal physical therapy helps as well. Releasing the muscles and the nerves. It’s a lot. Hang in as best as you can. Breathe.
This sounds very much like pudendal neuralgia, or injury to the pudendal nerve. Unfortunately many in the medical profession are not fully aware of what this is.
I would contact the London Pain Clinic, they are very good they will give you medication, pregabulin in my case which didn’t work for me, i then had Pulsed Radio Frequency given in the perineum which did give relief good relief from symptoms, and carbamazepine following this, but this medication didn’t work too well either. I needed to find the right medication for me so I got in touch with Dr Gareth Greenslade from the Bristol Pain Clinic who started me on Nortryptaline which works very well, I have since had decompression surgery arranged through Dr Greenslade it too has greatly helped , I am not cured, I don’t sit down very well on normal chairs , but I am not in pain all the time , the situation is manageable, using Nortryptaline and I have no side effects. Like you I thought I would never get better, you will, you need the right medical help. I am training BJJ, 3 times a week, swimming and walking, my recovery wasn’t quick but so much better now, work standing up most of the time, use a donut type cushion to drive, life is not perfect but I am not complaining.
Contact London or Bristol pain clinics they both helped me
I'm in the US so I don't understand how your medical system works. Heck, I barely understand how ours works.A few things popped out to me:
Have you had an MRI? I would have both sacral (pelvic) and lumbar MRI. Spinal issues can cause pelvic issues. The fact that standing gives you agony could possibly be related to your spine. If your GP won't order one hopefully another doctor can. But I don't think pain management doctors would. A gynecologist might. Mine did.
Do you have access to a gyno? Preferably one that has minimally invasive surgical training to consult for endometriosis as well as other issues. The gold standard test for endo is laparoscopy, a minimally invasive gynelogical surgery. However a gyno can do a transvaginal ultrasound and review your sacral MRI to look for signs of endo and other pain sources.
I feel for you, I really do. But understand that many of us have had chronic pain for years and even decades, not months. You are fortunate in that you have sought treatment and answers right away. It's easier to get pain relief when you've had it for a shorter time. Believe it or not your body is still working for you, not against you.
I have had an MRI of my lumbar spine. Everything was normal except the curvature which was abnormal, but that's because I have scoliosis(was diagnosed 16 years ago). Also I had an MRI of my tailbone/coccyx which showed inflammation around my coccyx, a bone spur displacing the ganglion impar, and a bone marrow contusion(bruised the bone). It also showed abnormal curvature, probably also due to the scoliosis.
And believe me I understand chronic pain. I've had chronic pain in my back, neck, and shoulders for 8 years now because of my scoliosis. The pelvic pain is relatively new, but being in pain is not.
I’m sorry I didn’t read your previous posts or mean to minimize your pain. I was hopeful that you’ve only been dealing with it a short time.
I see the London Pain Clinic see offers dorsal root ganglion blocks but I don’t know whether that might be either diagnostic, therapeutic, or not applicable. I had an impar ganglion block which didn’t help. I think it’s the same block, different name. But our specifics are different.
I understand about the travel to a physio. I tried several of them but each was app 2 hrs round trip. I wasn’t noticing any gains and the drive was insufferable. If you go you would probably know within 3-4 sessions if it’s helping.
If you don’t already know about Dr Bri’s Pelvic Health on YouTube check her out. She’s a pelvic physical therapist (physio) with some excellent, gentle videos. I second the recommendation to not do kegels, nor anything that hurts.
I have pudental neuralgia and take 200 mg of Pregablin in the morning and at night. It does help with the burning pain in the legs and even pain in the feet. I don’t believe it’s addictive. Start it at a low dose and work up to the dose, that is best for you. Robaxin helps with spasms. Rocky 68
Agree with reply from southern Sally. I am also in the USA and had pelvic and lumbar MRI, transvaginal ultrasound. I have read articles from London Pain Clinic and it sounds like they know about pelvic pain.
So, from hearing everyone's comments on here, I just made an appointment with my doctor to ask for pregabalin (also known as Lyrica) here in the U.S. I have a tight pelvic floor as well and have tried just about everything to get complete relief from the squeezing pain. My brain just will NOT CALM DOWN! It keeps jamming pain, anxiety and squeezing pain signals to my pelvic region. I'm encouraged by YorkDaf's comments and well as Jobie's comments about pregabalin. Kat, it sounds like you should give it a try. I used to be scared too about new drugs and the side effects but I've learned you can try something and if it doesn't work out, then you can stop. I've done that with Amitriptyline and nothing bad happened, so it's going to be okay. You will get better with time. I have had your symptoms too and today, I can manage but am always looking for ways to improve the pain that remains, if that makes sense.
Hi, I am so sorry for all of your suffering. Please know that pregabalin is not addictive in the sense that opioida are, for instance. Unless you think you will abuse it, like taking more than you're supposed to, I don't think you need to worry. It's just one of those medications that you can't stop taking suddenly. You have to taper off slowly or you will have uncomfortable effects because your body gets used to it. But this is very different from opiod addiction, in which people experience strong cravings to the extent that they will buy heroin to avoid withdrawal. You just have to taper off pregabalin slowly. Sometimes doctors assume patients will tell them when they stop taking a drug and they don't warn people not to stop taking it suddenly. That's when you will hear horror stories about withdrawal. With the kind of agony that you're in, it makes sense to try it and see if it helps you. Unfortunately, when doctors give you something like pregabalin and you refuse to take it, but continue to press for help for severe pain, they may get the mistaken impression that you are drug seeking to get opiods. They also get annoyed if you don't at least try the meds they give you, especially if you continue to ask for help, because they've already given you something and you haven't bothered to try it. This is unfair, but it's an unfortunate reality. I hope you get some relief soon!
I'm sorry to hearxthat gon. I'm much the same maybe to a slightly lesser degree. My pain level out 10 is 8 all day long, every single day. I've had every test under the sun and. . Nothing. Great I'm really healthy except I'm not!!!! There is a couple of things that do help. By the way pregabalin didn't work for me. Neither did morphine or tramadol. I smoke a vape which is legal in aus and is in the uk for special cases. Make yourself a very special case!!! I nearly committed suicide with until my son flew in from Australia to the UK and extracted me from very mentally abusive husband. Long story short. The vape is the best as it takes your mind to a different place and can lower mine from 8 to 3. Also swimming in the ocean does wonders fir me and the swimming pool. Exercise without aggravating the pain. Mine is linked to storing emotional pain in my body which I proved to myself today by having a huge crying jag which lowered my level from 8 to 6. So lots of things to heal. I'm going to a psychologist and may look at childhood sexual abuse as a stored thing. Hope this helps. Ask me anything. I went private in the uk a lot because I couldn't stand the wait but it was wasted money as all the specialist's don't know!!! Regards and love to you, Norma
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